Kiidney/Panccreas Transp

T plant Manu
ual

1 Kidney/P
Pancreas Tra
ansplant Man
nual
 Dedication

This manual is dedicated to the families of deceased donors who

make Kidney and Pancreas transplants at our center possible.

A Kidney/Pancreas transplant comes with the hope for an

improved quality of life and the possibility of living a longer and
more normal life. Accepting a transplanted organ also comes with
the responsibility for following, to the best of your ability, your care
plan, assessment schedule and the medication regime you are
prescribed.

We the members of your transplant team take the responsibility of

caring for you and your transplant very seriously. We will
endeavor to provide you with the best possible transplant care
based on current research and our clinical expertise.

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CHAPTER ONE - Welcome to the Pancreas Transplant Program
Our Philosophy Care
™ We believe that our work is possible because of the generosity of organ donors.
Our work must honor these remarkable gifts from donors and their families.
™ We believe that respect, dignity, integrity and empathy drive care and support
relationships. We expect courtesy and consideration in every interaction.
™ We believe that the goal of the Multi Organ Transplant Program is to work in
partnership with individuals, families, and the community to promote optimal
health and quality of life for patients through all phases of transplantation.
™ We believe that transplantation is a very specialized area in health care. To
succeed, we need the knowledge, skill and ability of our multi-disciplinary team.
™ We believe that all members of the health care team make an important and
valuable contribution to the plan of care. Each member of the team is a dedicated
professional who continually maintains a current knowledge base and
consistently strives to advance the science and art of transplantation.
™ We believe that all people are unique, with their own needs, goals, and abilities.
™ We believe that people achieve their optimal state of the health in collaboration
with the health care team.
™ We believe that information and education provide patients with knowledge to
exercise their rights and responsibilities to make informed decisions about their
health care.
™ We believe that the best possible care is based on patient needs, available
resources, and ethical principles.

Our Expectation of you

Throughout your transplant experience in the Multi Organ Transplant Program at
The Toronto General Hospital you have responsibilities as well:

™ Work in partnership with the health care team to ensure the best possible
treatment, rehabilitation, discharge planning and follow up care.
™ Provide accurate information and share any concerns with your members of the
health care team.
™ Inform the team if you do not understand or cannot follow the health care
recommendations.

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Your Transplant Team
The pancreas transplant team is a group of specially trained professionals who
work together to help your transplant be a success. Our team will evaluate
your health prior to listing for transplant. We will do tests such as blood
work, x-ray and scans. When all your results are in, the team will work with
you in the process of listing.

During your transplant journey, we will work together with you to help you
care for your new organs, your health, and support you through this process.

Your transplant team includes:

™ Surgeons
™ Nephrologists
™ Nurses
™ Social Workers
™ Physiotherapists
™ Occupational Therapists
™ Transplant Coordinators
™ Spiritual Care
™ Pharmacists
™ Administrative Assistants
™ and most importantly...YOU!

Transplant Surgeon - The transplant surgeon is a doctor involved in the evaluation and
selection. The surgeon may ask for more tests to better assess you pre-transplant as
these tests may give the surgeon important information for your transplant surgery. The
surgeon performs the transplant operation and manages the post-operative recovery and
the surgical care and is also involved in your care over the long term.

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Transplant Nephrologist - The Transplant Nephrologist is a doctor who is highly skilled
in the diagnosis and treatment of kidney care. You will see one of our transplant
nephrologists before you go on the transplant list. They will review your assessment
results and answer your questions. This doctor, together with your family doctor will
care for you after your transplant in the clinic setting.

Cardiologist - The Cardiologist is a doctor who specializes in the diagnosis and

treatment of heart disease. You will be assessed by the cardiologist prior to listing to
ensure that your heart health is at its best prior to surgery. You will be followed post-
transplant by our cardiologist.

Transplant Coordinator - The transplant coordinator is a registered nurse who provides

pre-transplant education and coordinates the transplant evaluation. They can provide
support for you while you are on the waiting list. Post-transplant, the transplant
coordinator monitors you and arranges your follow up care.

Social Worker - The Social Worker meets with all transplant candidates to review your
situation and supports. They will work with you to plan for your transplant. They can
advise you about available resources such as transplantation, housing and local
accommodations, financial assistance and your medication coverage. They also provide
supporting counseling for patients before and after transplant.

Administrative Assistants - The administrative assistants work closely with your

transplant coordinator during the assessment and post-transplant period. They are
pivotal to the program and are responsible for test bookings, clinic appointments and
they can also relay concerns to the transplant team on your behalf.

Pharmacist - The transplant pharmacist works closely with your doctors and the
transplant team while you are in the hospital to make sure that you receive the most
appropriate medication therapy. After your transplant; while still in hospital, you will
attend a Self-Medication Class taught by the Transplant Pharmacist to learn about your
transplant medications. The Transplant Pharmacist also reviews all of your medications
with you before you go home and answer any questions you may have. They will also
provide you with a medication schedule to help you keep track of your medications.
Once you are discharged, our transplant pharmacist is available to you in consultation for
any questions or concerns you might have regarding your medications.

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Inpatient Resource Coordinator - The Inpatient Resource coordinator is a registered
nurse who ensures you are ready for discharge from hospital and that a smooth transition
is made from being a hospital patient to a clinic patient. The inpatient resource
coordinator communicates with the outpatient transplant coordinator about the events
of you hospital stay.

Spiritual Care - Spiritual Care Professionals are part of the team that provides care to
patients and families in the transplant program. They seek to nurture and celebrate
spirituality by providing assistance that is sensitive to cultural and religious diversity.

Transplant Infectious Disease Doctor - The infectious disease doctor is a specialist who
helps your transplant team to diagnose and treat infections. Some transplant candidates
have unique concerns with respect to the risk of infection and may need to be seen both
pre and post-transplant.

Dermatologist - The Dermatologist is a specialist in the care of skin problems. The

dermatologist has an excellent knowledge in transplant patients specifically and can
diagnose skin changes or issues that can happen post-transplant.

Health Care Providers outside the Transplant Team - Your Family Doctor will always
be a very important member of your healthcare team. It is important you to have regular
check-ups in addition to your visits with the transplant team. The transplant team and
your local medical team will work together with you to provide care after your transplant.

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CHAPTER TWO – Getting Ready for Transplant
The Kidney and how it works
Kidneys are about the size of your fist. The kidneys are located at the back of your body,
one on each side, a few inches above your waist. They are brown in color and have
millions of tiny working units called nephrons.

™ Fluid balance
™ Waste Elimination
™ Mineral regulation
™ Hormone production

Fluid Balance and Waste Elimination

Blood flows continually through the nephrons in the kidneys. These nephrons filter out
excess water, waste products and many other substances from your system. Waste and
excess water is removed from your body as urine. Urine made in your kidneys passes
down through tubes called ureters and into your bladder.

Mineral Regulation
Kidneys also regulate the amount minerals in your blood. Some of these minerals are
calcium, phosphorous, sodium and potassium. There are others too. When you have the
right amount of these minerals in your blood, they help with the forming bones and
keeping your heart, muscles and other body functions working properly.

Hormone Production
When your kidneys are working well, they produce hormones. Two important hormones
are Erythropoietin and Renin. Erythropoietin is a hormone that helps your body to make
red blood cells and hemoglobin. Renin is a hormone that helps to regulate your blood
pressure. Your kidneys will perform all of these functions until they are very diseased.
One kidney can do the job of both. With one working kidney you can regulate minerals,
remove waste, and produce hormones. This is why transplant patients receive only one
kidney during transplant surgery. This is also why a living donor can still lead a normal
life after donating one of their kidneys.

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The Pancreas and how it works
The pancreas is located beneath your stomach and is attached to your small bowel. There
are two main functions of the pancreas are to make:

™ enzymes (special proteins) that digest food and;

™ hormones in cells called “Islets of Langerhans”

The pancreas makes enzymes that help to digest all types of food. The hormones made in
the pancreas include insulin – which is needed to change sugar into usable energy. When
the pancreas does not make insulin, the person has Type 1 diabetes. This means that the
Islets of Langerhans are destroyed and make little or no insulin. Type 1 diabetes is
considered an auto-immune disease of which the cause is still unclear.

When a patient has Type 1 diabetes, his or her body is not able to control the blood sugar
level in the body. From this, complications can happen. Diabetes can affect your:

™ Eyesight
™ Nervous system
™ Blood vessels
™ Heart
™ Bowel function
™ Blood pressure

The impact of diabetes on the blood vessels in your kidneys can cause kidney injury
which is why you will be followed closely post-transplant by a nephrologist to ensure
good kidney health.

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Why you may need a kidney and pancreas transplant

Diabetic kidney disease can lead to the gradual loss of kidney function. When the
kidneys stop working, they cannot do their job of eliminating waste, regulating minerals
or producing hormones.

When enough nephrons are damaged, you will not have enough kidney function. You
will need dialysis or a transplant. Dialysis is a life-saving treatment. But it does not
replace all the complicated functions of real kidneys. A successful kidney transplant is
able to perform all these functions. Because of this, a transplant has more advantages
compared to dialysis. Patients gain more independence and generally have more energy
with a transplant. Also, patients with a kidney transplant, on average, live longer than
those on dialysis.

Kidney transplantation is still a treatment option for kidney disease. It is not a cure. You
can get your new kidney from a living donor, or from a person who has died (deceased
donor). The hope is that your transplanted kidney will last several years.

Outcomes are variable depending on individual risk factors. This will be discussed in
detail with your transplant surgeon and nephrologist.

Type 1 diabetes managed by insulin does not replace normal pancreas function.
Complications as a result of sugar fluctuations can occur despite careful management. A
pancreas transplant allows for improved quality of life and may stabilize neuropathy. If a
kidney and pancreas transplant has been recommended for you then there is no
possibility of your kidney failure reversing or that your pancreas will recover normal
function.

If your doctor is recommending that you consider having a kidney transplant it means
that there is no chance that your kidneys will recover. Your doctor believes that this will
be the best treatment for you. We will help you understand the benefits and risks of
having a transplant. This will give you the information to make an informed decision.
We will support you as you go through the process of deciding to have a transplant. The
decision to proceed is up to you. We will support your choice whether you go forward
with transplant or not.

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What are my Transplant Options?
As transplants become more common, patients are more interested in receiving kidney
and pancreas transplants. For patients with Type 1 diabetes and kidney failure, there are
several options available.

Living donor kidney transplant followed by pancreas transplant

Living donor transplant happens when someone gives you one of their kidneys. This can
be a family member (parent, brother or sister, or child), more distant relative (for
example, cousin, aunt or uncle), husband or wife, in-law, or even a friend. The person
does not have to be related by blood to you at all. After being reassessed by the transplant
team, and you have recovered from the kidney transplant (usually about six months), you
may be placed on the list for pancreas transplant.

Simultaneous kidney and pancreas transplantation

During this operation, you receive a kidney and a pancreas from a deceased donor. You
have one operation, where both organs are inserted at the same time.

Deceased donor kidney transplant followed by pancreas transplant

Some people received a kidney transplant at a time when pancreas transplantation was
not as common. They can still receive a pancreas transplant, even if it is several years since
their kidney transplant. Before going on the pancreas transplant list, these patients will
go through a complete assessment including kidney function like they did during their
first transplant.

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The advantage and disadvantages
There are advantages and disadvantages to kidney and pancreas transplant.
Kidney/pancreas transplants are a treatment for kidney failure and diabetes, not a cure.
We believe that the advantages of having a kidney transplant outweigh the
disadvantages. The advantages and disadvantages are listed below:

Advantages
™ you do not have to be on dialysis
™ you will not need insulin injections
™ you have more energy
™ your diet is less restricted
™ you do not have fluid restrictions
™ overall, you feel better

Disadvantages
™ you will need to take drugs for the rest of your life to prevent rejection
™ you will come to the transplant clinic for follow up appointments
™ you may have side effects from your medications

Talk to your doctor and transplant coordinator about these advantages and
disadvantages. They will help you work through each issue and help you decide if dialysis
and medical treatment or transplantation is better for you.

It is very important for you to think about all your options, and discuss them with your
family and the transplant team. For example, some people are afraid to ask someone to be
a live donor, because they think it is dangerous for the donor. In fact, the donors are
assessed very carefully, so that their risk is very low (about the same as having your
appendix removed). Other people don't know that an in-law, a friend or even someone in
their church, synagogue, or mosque can donate a kidney. Please ask us any questions you
might have.

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Who is suitable to have a kidney/pancreas transplant?

Any patient can look into having a transplant. The team assesses each patient
individually. The basic requirements are:

™ You must want to have a transplant, and understand and accept the
responsibilities after the transplantation
™ You must complete an assessment which shows that you are able to safely tolerate
and aesthetic and surgery, and that you do not have any other active medical
problems
™ You must not have an infection at the time a transplant becomes available
™ You must not be receiving treatment for cancer. Your physician will decide what
period of time has to pass before you can be assessed for transplant after cancer is
diagnosed.
™ If you are currently smoking you must be smoke free for approximately 3 months
prior to listing. You must remain smoke free thereafter.

Our goal is to make your transplant as simple and as successful as possible. We will do
everything we can to make your transplant work for you. We will include you in your
care decisions. We will help you to understand your treatments and check up on you
regularly to ensure that your treatment regime is working for you.

We need your commitment too. Having a transplant will change your life significantly.
Before you make this choice you need to be prepared to make changes. After your
transplant you must follow the treatment regime very carefully to have a successful
transplant. This includes being part of your health care team, learning about your
treatments, taking your medications and attending your clinic appointments.

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The Transplant Assessment Process
The transplant assessment process helps to determine if you are a transplant candidate.
An important part of this assessment is to try and ensure that it is safe for you to have a
transplant. Your assessment includes different types of medical tests and interviews with
members of the transplant team. We make sure that you do not have any other
conditions or health problems that would put you at risk if you were to have a
kidney/pancreas transplant. Sometimes your assessment will uncover a problem that
makes transplantation a poor option for you. Or it can identify a problem that may need
to be corrected before you become a candidate for a transplant.

The Transplant Work-Up - Several tests are routinely done during assessment. These
include:

™ Blood work - we take many tubes of blood to test your blood type, HIV, hepatitis,
kidney and liver function. We routinely require blood tests to keep your
assessment current)
™ Chest X-Ray – to look at your lungs, diaphragm, and heart size
™ Electrocardiogram – an electrical picture of your heart
™ Echocardiogram – an ultrasound picture of your heart
™ Exercise or Persantine Stress Test – a test to determine how your heart performs
™ Iliac Doppler – a test to check how blood well blood flows to your legs and feet
™ Abdominal Ultrasound – to show a picture of the major abdominal organs

Consultation interviews - As part of the assessment process, interviews will be arranged

with several members of the transplant team. They may include:

™ Transplant Surgeon
™ Transplant Nephrologist
™ Transplant Coordinator
™ Social Worker
™ Transplant Psychiatry
™ Cardiologist
™ Anesthesiologist

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Infection Risks with Transplantation
The risk of infection related to transplantation needs to be considered when choosing
whether or not to proceed with kidney and pancreas transplantation. We hope this helps
transplant candidates make an informed decision about transplant surgery. Please speak
to your doctor or transplant coordinator if you have any questions about the information
below.

Infections are an unavoidable risk of transplantation. They are the most common
complication after transplantation. The risks of developing an infection must be balanced
against the benefits of a transplant.

Transplant patients are at greater risk for infection because the anti-rejection drugs given
after transplant affect their immune systems. Bacteria, viruses, fungi, or other organisms
can cause infections. Most infections can be successfully treated.

We try to minimize the risk and impact of infections in part by:

™ routine testing of the donor and of blood products

™ giving anti-infective medications at the time of surgery and post transplants and,
™ monitoring and testing recipients

Our knowledge of the infection risk with transplantation continues to grow. Over time,
we will continue to learn about new infections that are currently unknown. Wound
infections, abscesses, pneumonia and urine infections are potential complications of any
surgery. Some, but not all, of the infections risks associated with transplantation
discussed below:

Multi-drug Resistant Bacteria - Some patients in hospital have developed bacterial

infections that are resistant to standard antibiotics. Some specialized antibiotics may be
effective in this situation. We try to reduce the risk of multi-drug resistant bacterial
infections in our transplant unit by only giving antibiotics when absolutely necessary.

Viral Hepatitis (Hepatitis A B, C) - Donors are tested for the presence of hepatitis B and
C infections. As with other viral infections, testing is accurate but not 100% effective in
avoiding disease transmission. Organs from donors who have been exposed to the
hepatitis B or C virus are sometimes knowingly given to recipients who have also been
previously exposed to this virus and have developed immunity.

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Cytomegalovirus (CMV) - CMV can cause flu-like symptoms, pneumonia, hepatitis, and
other illness. Most people have already been exposed to this virus and have some degree
of immunity. Since CMV is very common in the general population, you have received an
organ from a donor that is positive for CMV. Transplant recipients who are at high risk
of developing CMV infection will be given medications to reduce the risks of CMV
infection.

Epstein - Barr virus (EBV) - EBV also causes flu-like symptoms. Rarely, it can cause a
disease similar to a lymphoma (a type of blood cancer). Fortunately, most people have
been exposed to EBV and have partial immunity. Transplant recipients without any
previous immunity will be given medications to reduce the risks of EBV. Reasonably
effective treatment is available if an EBV infection develops or recurs post-
transplantation.

SARS (Coronavirus) - SARS is potentially transmissible with a transplanted organ.

There is no proven method available to test donors for SARS at this time. We try to
reduce the risks of SARS transmission by checking donors with a screening questionnaire
and by not retrieving organs from hospitals that have had uncontrolled spread of SARS.

West-Nile Virus - Most patients with this infection have no symptoms or minor
symptoms. Sometimes the infection can produce permanent brain or nerve damage. This
virus is transmitted by insect bites, but also through blood transfusions or organ
transplantation. It is a fairly new problem in Ontario. We do not yet know the likelihood
of contracting this infection but a very small number of our transplant recipients have
become infected. Although most have recovered, others have become disabled or have
died. Currently, blood and organs from donors with symptoms suspicious for West-Nile
infection are excluded.

AIDS (Human Immune Deficiency Virus) - All donors are tested for HIV. The testing is
very accurate but again, not 100% reliable for preventing HIV transmission with blood
organ donation. There is a brief period of time during the beginning of HIV infection
when the virus testing could be negative but the donor could still be infectious.

Polyoma Virus - A transplanted kidney may become infected with the Poloyma Virus.
This infection can be acquired from the donor organ or through environmental exposure
to this agent. This virus sometimes irreversibly damages kidney grafts. There is no
effective treatment other than to reduce immune suppression.

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Unknown Infections - Transplant recipients may be at risk of acquiring previously
unknown infections due to their weakened immune system. It is possible such an
infection may be acquired from the donor. Every effort is made to ensure that donors
with symptoms suspicious for any type of known or unknown infection are excluded.

Cancer Screening
The Canadian Society of Transplantation recommends that potential transplant
recipients be screened for cancer. These guidelines should be followed through your
family doctor's office as listed below:

Cervical Cancer - Every woman should be screened for cervical cancer. The test is
cervical cytology smears – PAP smear test. This should be done every year. Women, 30
years of age or older, may be screened every 2-3 years if they have had 3 normal smears in a
row.

Breast Cancer - Beginning at age 40, woman should have a mammogram every 1-2 years.
Clinical breast examination and breast self-exam are encouraged.

Colorectal Cancer - Patients with no personal or family history of colorectal cancer

should being screening at the age of 50. This can be arranged through your family
doctor's office.

Following your Evaluation

If you are deemed a suitable candidate for transplant, you will be contacted and given a
clinic appointment to discuss and review the following:

™ Results of the assessment testing

™ Review and signing of the surgical consent, at which time a copy will be given to
you
™ Blood work will be drawn for antibodies and tissue typing and any other updates
needed
™ You will be given a schedule for these tests in future
™ Review telephone numbers that you may be reached at
™ We will review reasons for placing you on hold on the transplant list

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CHAPTER THREE – The Cost of Transplantation

The Cost of Transplant Medications

When you are discharged from the hospital after your transplant, you must be ready to
pay for your medications.

These costs can range from $200 - $4,000 per month.

If you have not registered with Trillium and paid the deductible, you will need to pay by

™ using your drug benefit card to directly bill your insurance company (if your
company offers this option)
™ VISA or MasterCard
™ Cash

NOTE: The Transplant unit will not provide you with medications to take home.
Toronto General Hospital does not have a drug assistance plan for Transplant patients.

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The Trillium Drug Program
Many transplant drugs are expensive and unusual. These drugs can cost hundreds or
thousands of dollars. Even the best insurance programs may not completely cover the
costs of these medications.

The Trillium Drug Program, funded by the Ontario Government, is available to all Ontario
residents, under 65 years of age, to help pay for such medications. The Trillium Drug
Program also covers recipients who are on social assistance, Ontario Disability or have
Home Care drug cards.

We encourage all Ontario recipients under the age of 65 to register for the Trillium Drug
Program BEFORE being listed for transplant.

There is no cost to register with the Trillium Drug Program. The application takes only a
few minutes to complete. Being registered with Trillium does not interfere with your
private drug coverage. Trillium may assist you with drug costs that are not covered or
only partly covered by your private drug plan. You can get applications at any Ontario
pharmacy, online, or through your social worker. Your social worker will provide you
with further details about his program. The website to download the application for the
Trillium Drug Program is:
http://www.health.gov.on.ca/english/public/forms/form_menus/odb_fm.html

As a transplant recipient you must keep you registration active with Trillium. You must
renew your registration with Trillium every year in August.

Seniors - Recipients over the age of 65 years are covered automatically with the
government drug plan under the seniors benefit plan.

If you have any further questions you can contact your social worker or Trillium Directly
at:

PO Box 337, Station D

Etobicoke, ON, M9A 4X3
24hour line: 1-800-575-5386
Fax: 416-642-3034
e-mail: Trillium@resolve.com

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Drug Coverage – Private Insurance
The following points are things to consider prior to listing for transplant:

™ Who is the provider of your private drug coverage (Manulife, Sunlife?)

™ What is the percentage of medication costs covered by your private insurance?
™ Is payment of medications automatic or do you have to pay up-front and get
reimbursed later?
™ Are there any yearly maximums for drug coverage?
™ Are there any lifetime maximums for drug coverage?

If you pay for your medications up front, how do you plan to pay for your transplant
medications? You must have a payment plan in place prior to transplant.

You should submit a medication list to your insurance company for pre-approval. One
will be provided for you at time of listing by your transplant coordinator.

If your transplant team needs to request special approval for medications that your
private plan does not pay for, we can only do so with Trillium in place. Therefore,
advanced application and approval to these programs will prevent any delays in providing
unexpected treatments.

Financial Information
Having a transplant can have an impact on your finances. It is important for you to know
this and plan ahead. Our income may change and you may have new expenses. Every
situation is unique. Use the following information as a guide to see if there are
opportunities for financial support.

Transplant patients may be eligible for financial help from sources such as:

™ Insurance – Employment or Sickness Benefits

™ Employment and Retraining Funding
™ Canadian Pension Plan – Disability (CPP-D)
™ Ontario Works (OW)
™ Ontario Disability Support Program (ODSP)

It is important to know how these programs may assist you with important financial
support. Please contact your transplant social worker for assistance and details about
these programs to see which ones you may qualify for.

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Insurance
Employment Benefits - Some transplant patients are able to return to the job or position
they had before transplant. Depending on your employer and the amount of time you are
off sick, you may have short or long term disability benefits. Your employer will be able to
tell you more about this.

Sickness Benefits - If your work does not have STD/LTD or the payment is low, you
might qualify for Employment Insurance (EI) sickness benefits. EI sickness benefit gives
you 15 weeks of income. Contact your local EI office for more information about
qualifying.

Employment and Retraining Funding - Some patients may return to work after
transplant but need to change their job. In this case, patients may qualify for an Ontario
government program for vocational assessment and rehabilitation. This program is for
patients who have physical problems that prevent them from finding or keeping their job.

Unfortunately there is a long waiting list. Once you are accepted into the program, you
qualify for financial assistance for retraining costs and a living allowance.

Private companies also offer vocational assessments, counseling and retraining for a fee.
Some community agencies offer counseling free of charge or for a small fee.

Canada Pension Plan – Disability (CPP-D) - If you are permanently unable to work
after your transplant and you paid into CPP, you can apply for CPP benefits. CPP
approves your application based on the medical information that they receive from your
doctor. Drug benefits are not included.

Fill out an application as soon as possible. It can take several weeks to process. Benefits
are not retroactive. Some restrictions may apply.

Ontario Works Assistance (OW) - You can apply for Ontario Works if you have a low
income, few assets and are temporarily not able to work. Your total family income
determines if you are eligible. Drug benefits are included. You will have to contact your
local OW office for assessment.

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Ontario Disability Support Program (ODSP) - If your doctor states you are
permanently disabled and cannot return to work, you may qualify for the Ontario
Disability Support Program. This program is also for patients with low family income
and few assets. Drug benefits are included. You will have to contact your local ODSP
office for assessment.

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Other Financial Considerations
After your transplant you will have expenses related to doctor and clinic visits. These
will be out of packet expenses. We will describe a few below and offer some brief tax
tips to help you recover some of these costs.

Parking - Parking near the hospital is expensive. The closer to TGH you park, the more
expensive it is. There are some parking lots a short walk from the hospital. It is worth
looking at the costs of nearby lots if you will be coming to TGH often. Consider taking
public transit (TTC) or Go Transit whenever possible.

Wheel Trans - If you live in Toronto and are physically disabled, you can apply for
Wheel Trans. This service is available to people who are not mobile enough to use the
regular transit system. To get a Wheel Trans number, you must have an interview with
the TTC. Call 416-393-4111 to set up an appointment.

Housing - Sometimes patients need to arrange for a place to stay locally during the post-
transplant period. Talk to your social worker about this. We can give you a list of places
to stay.

Travel - For patients living in Northern Ontario, the Northern Health Travel Grant
provides some financial assistance for travel to medical appointments. As a patient, you
must pay the cost of travel and then apply for reimbursement you will need to have your
local doctor fill out their section of the travel grant form, and then bring this form to your
TGH specialist to fill out their section.

Social Assistance (OW/ODSP) may help you with travel costs, no matter where you live.
You must apply at your local office for help.

Tax Tips - Check the Revenue Canada Agency Website or ask your accountant for
information about deductions on your income tax related to your illness and your
transplant. The web site is:

http://www.cra-arc.gc.ca/menu-e.html

Here is a partial list that may be helpful. Remember to keep all your receipts for all your
expenses. You cannot claim for anything if you have already received reimbursement,
unless that reimbursement is claimed as income. You may need a medical letter to
support your claim for some items.

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Medical expenses that you may be able to claim include:

™ Long distance calls to the hospital

™ Any diagnostic procedures you had to pay for
™ Any payments you made to the hospitals not covered by your provincial health
insurance
™ Prescription drugs that you paid yourself, including any portion not covered by
your private insurance or the Trillium Drug Plan
™ Fees paid to doctors for completing medical or insurance forms
™ Ambulances
™ Parking for hospital and clinic visits
™ Outside of Canada Medial expenses – not covered by provincial health insurance
™ Cost of housing, if you relocate immediately following your surgery
™ Home care services not covered by provincial health insurance
™ Premiums paid to private or government drug plans

The list of eligible expenses is extensive and you should refer to the Revenue Canada
Website for a full list.

You may claim expenses for yourself, your spouse and, with some limitations, your
dependents. You can claim expenses for any twelve-month period ending in the current
tax year.

Travel Expenses

™ If you travel more than 40km one way for medical appointments, you may be able
to claim transplantation costs: train, bus, or taxi costs
™ If you use your own car, you can claim a reasonable amount for travel,
approximately $0.50/km. Check with Revenue Canada. This amount may change
over the years
™ You will need to prove the number of trips you made to the hospital for
appointments. Keep a travel log with mileage that you travelled.
™ If you travel more than 80km one way for medical appointments you are also able
to claim reasonable expenses for meals ($51/day) and accommodation as well.

23 Kidney/Pancreas Transplant Manual

Legal Information for Patients

Powers of Attorney

It is important that you think about your situation and make plans for your powers of
attorney. There are two basic forms for Powers of Attorney.

™ Powers of Attorney for Personal Care

™ Powers of Attorney for Finances

Powers of Attorney for Personal Care

Your power of attorney (PoA) for personal care is a person that you choose to make
decisions about your care when you are not able to make them yourself. This person is
also called your Substitute Decision Maker.

To appoint a power of attorney, you need to create a legal document called Powers of
Attorney for Personal Care decisions.

If you do not assign a PoA for personal care, the law states who can make decisions, in the
following order of priority:

™ spouse
™ adult children
™ parents
™ siblings
™ extended family members

If there is no one to make decisions for you, the law states a public official can be
appointed to make decisions for you when you cannot.

Sometimes patients have a PoA for health care decisions that is different than their usual
substitute decision maker. If this applies to you, make sure this is clearly stated in your
PoA document.

Give copies of you PoA document to your doctor, your PoA and the hospital when you
have your transplant.

24 Kidney/Pancreas Transplant Manual

Powers of Attorney for Finances

Your power of attorney for finances is a persona that you choose to made decisions about
your finances when you are not able to make them yourself.

To appoint a Financial PoA, you need to create a legal document called Powers of
Attorney for Finance decisions. This legal document states who will be responsible for
making financial decisions, payments, etc., if you are unable to do so.

Advance Care Planning

Advance Care Planning is also known as advance directives and living wills. Decisions
about your healthcare need to reflect your wishes and values. There may be a time in the
future when you are unable to make decisions about your medical care and treatment.
This situation may be temporary or permanents; it could happen suddenly or gradually.

If you were unable to make decisions for yourself, there are two important things we need
to know:

1. What are you specific wishes regarding your healthcare?

2. Who would you want to make decisions for you?

It is important to answer these questions now, while you are capable of making decision.
This helps to ensure that your wishes will guide your care.

Advance care planning helps to clarify how you wish to be cared for and gives someone
you trust the authority to act on your wishes. This person is also known as a Substitute
Decision Maker. This is the only person we would ask to make decisions, in the event
that you are unable to do so.

Please talk about you care wishes with your family and anyone else who might make
decision for you in the future. We are always happy to answer any questions you have a
bout advance care planning.

There are guides that you can use to help you at:
http://www.citizenship.gov.on.ca/seniors/english/programs/advancedcare/docs/AdvancedCare.Guilde.pdf

25 Kidney/Pancreas Transplant Manual

CHAPTER FOUR – Waiting on the List

Waiting on the List

While you are on the active waiting list, yearly updates of all testing will be done through
your dialysis unit or family physician's office. This will ensure that you are still medically
safe to undergo transplant surgery.

There are 2 goals for the waiting period for transplantation.

1. Maintain your health as you wait for transplant surgery

2. Identify and manage any new problems that may arise.

While you are on the list, you will occasionally be asked to come to the clinic to see your
coordinator and transplant nephrologist. These clinic appointments are excellent
opportunities for you to ask questions or clarify misconceptions regarding transplant you
may have heard while waiting on the list. You may contact your transplant coordinator
to set up an appointment if you feel the need for additional information.

Your Place on the Waiting List

The waiting list is generated based on specific criteria. At any time there are over 100
patients in Ontario waiting for a kidney and pancreas transplant. There is one
computerized network or database for all transplant centers across the province. This
database contains information about organ identification and sharing. The Trillium Gift
of Life Network (TGLN) is the organization that takes care of the organ sharing system
in the Toronto region. They also support donor families and organize the organ donation
process with transplant centers.

The wait time for a kidney and pancreas transplant varies from a few months to several
years. This can be a very stressful and discouraging time for you. You are waiting for a
transplant under circumstances over which you have no control. There are many
unknowns.

You may also be experiencing fear; this is normal and it is okay to be scared. There are
many resources available to help you deal with this stress. A good place to start is with
the members of your transplant team. Talk to them. Ask them your questions.

26 Kidney/Pancreas Transplant Manual

Maintaining Contact

When a kidney and pancreas becomes available time is critical and we need to get in
touch with you right away.

We must know how to contact you at all times. For this reason you need to provide your
transplant coordinator with all you contact information.

™ Home number and address

™ Work number
™ Cell phone number
™ A nearby friend or relative

You must information your coordinator immediately if:

™ any of these contact numbers change

™ you will be out of reach for a period of time (e.g. Travel)
™ you are ill or have an active infection
™ you are hospitalized for any reason

We will need to place you hold should the above circumstances happen however, you will
not lose your place on the waiting list and will be re-activated once appropriate.

27 Kidney/Pancreas Transplant Manual

Deceased Donor Process
Organ donation within Canada is based on the kindness and generosity of the donor
family consenting to donate a loved one's organs and tissues, at a time of considerable
tragedy, stress and grief. The continued success of transplantation hinges on organ
donation.

Deceased donors are individuals who have recently died from severe injury causing brain
death, the donor is identified and declared brain dead and the next of kin is approached
for consent to donate their loved one's organs and tissues for donation and
transplantation.

The organ donor is tested to make sure the organs are suitable for transplant. Tests
include blood tests, virus testing, x-rays and scans. After testing, organs are assigned to
the most appropriate patient on the wait list. After the transplant program accepts the
organ, the donor is taken to the operating room. A specialized team of surgeons then
works carefully to remove the organs for donation.

Are the kidney and pancreas suitable for transplantation?

Blood type is an important part of transplantation. People are identified as blood type A,
B, AB, or type O. Blood type affects how long people will wait.

™ type O is the most common

™ the next most common blood type is A
™ Only a small percentage of the population has type B or type AB blood

Not every kidney/pancreas that becomes available will be right for you. Blood type is not
the only thing that matters. For every donor and recipient, we look at 4 things. These
are:

™ blood type
™ genetic typing
™ cytotoxic antibodies
™ viruses

Blood Type - Your blood type must be compatible with the blood type of the donor. The
factor i.e. 'positive' or 'negative' in the blood group does not have to match.

28 Kidney/Pancreas Transplant Manual

Genetic Typing - Genetic typing is also called tissue typing. It gives us information to
find an appropriate match for you. Most of our donors are recipients are not well
matched. In living related donors, we often find some similarity in the typing. Currently,
we type and match six significant separate areas on your chromosomes. Deceased donors
often match none of these numbers or at best one out of the six. Genetic typing is
complicated to explain. Your transplant team will explain in detail if you would like.

Cytotoxic Antibodies - We test all recipients to see if they have antibodies that could
react against the tissue of their donor. To do antibody testing, our lab mixes your blood
cells with the blood cells of the donor. If the results come back negative, it means that
there are no antibodies and the match is OK. A positive test means that there are
antibodies. A transplant between you and this donor is not possible. Once on the
deceased donor list, you will have blood drawn for this every 3 months. You are tested
against 20-30 random people to determine how easy or difficult you are to match. The
results are given as a percentage. If you are given results of 10% you are reacting against
only 2 of 20 people are fairly easy to match. If you are given a percentage of 90%, you are
reacting against 18 of 20 people and are therefore more difficult to match and have a
higher risk of rejection.

Viruses - We test all donors and recipients for several viruses including AIDS and West
Nile Virus. If the donor carries these viruses they are automatically turned down.

¾ CMV
o All recipients and donors are also screened for a virus called CMV. Eighty
percent of the adult population in Canada is positive for this virus, meaning
that at some point, they were exposed to it. In some cases we will give a
CMV positive kidney and pancreas to a CMV negative individual but we
will give you extra medications for a period of six months to try to keep you
from getting ill as a result of being exposed to this virus. This strategy has
worked relatively well. CMV is a virus that may cause flu-like symptoms in
normal individuals but which can cause serious illness in a transplant
patient.

29 Kidney/Pancreas Transplant Manual

 ¾ EBV
o Epstein-Barr virus, frequently referred to as EBV, is a member of the herpes
virus family. It is one of the most common human viruses. As many as 95%
of adults between 35-40 years of age have been infected. EBV also
establishes a lifelong dormant infection in some cells of the body's immune
system. All recipients and donors are tested for EBV. About 75% of the
population is EBV positive and some people are EBV negative. Individuals
who are EBV negative are at increased risk of developing some types of
cancers. If you are EBV negative you will have this issue explained in more
detail by your transplant nephrologist.

For those receiving a deceased donor kidney and pancreas the physician will look at these
four matching categories every time an organ of your blood type is available. He will also
consider such things as medical priorities. Everyone on the list is treated fairly using all
the information available.

The race and sex of the donor and recipient do not matter. Deceased donors must
however be:

™ free of heart disease

™ free of infection
™ free of chest trauma

Even if all these tests are ok, there are still times when your transplant may not happen.
Even though the initial testing may look good, the final approval must come from the
surgeon after he has looked at the kidney and pancreas to be transplanted. So, you may go
through the process of getting the call to come for surgery; you get ready for surgery, and
then have you surgery cancelled. This is a false alarm. This can be very disappointing. It
is for your protection.

Trillium Gift of Lift Program (TGLN) - TGLN is the government service that keeps
track of organ donation and distribution. This program is responsible for the allocation,
retrieval, and transplantation of the organs. Our branch of the TGLN is the largest and
busiest in Canada. TGLN is an integral part of the Multi-Organ Transplant Program.
The TGLN program is first to be notified about a potential organ and tissue donor. They
use a matching system to find a transplant recipient. A recipient coordinator will call you
when a transplant becomes available.

30 Kidney/Pancreas Transplant Manual

What is a False Alarm?

A false alarm happens when a coordinator calls you to come for your transplant and then
at the last minute, your surgery is cancelled. This is one of the more upsetting things that
can happen to you while you are on the transplant list. Keep in mind that false alarms can
happen.

Once you arrive at the hospital, things move at a hectic pace as you move through the
procedures to prepare you for the transplant. In the middle of this, you are told that the
transplant surgery cannot be done.

The surgery can be cancelled for many reasons:

™ We may have found a problem with the donor at the last minute
™ One of your last minute tests has unusual results so the operation cannot safely
proceed and,
™ We may have found that there is a problem matching an organ to a recipient.

You and your family may feel shock, disappointment and sadness when this happens.
Hopefully, you will be called again soon, for another possible organ transplant. If you, or
any members of your family are having difficulties coping with the false alarm experience,
let your coordinator know. They will be able to refer you to someone on the transplant
team who can help you deal with your feelings.

In accordance with the Ontario Human Tissue Gift Act, The Toronto General Hospital and
the Multi Organ Transplant Program do not support or accept payment of any kind from
recipients, organizations or any party for organs for transplantation.

It is against the law to buy, sell or otherwise deal in, directly or indirectly, any tissue for
transplant or any body part or parts of the body for therapeutic purposes, medical
education or scientific research.

If at any time you are approached by a person to purchase or sell an organ for transplant,
please immediately contact:

Patient Relations at 416-340-4907

31 Kidney/Pancreas Transplant Manual

How Long Will I Have To Wait?
How long you will wait for a transplant depends on:

™ your medical status

™ your length of time waiting
™ your blood group
™ organ availability

In general, as the number of patients requiring transplant increases, so does the wait time.
We can talk to you about the average wait time for someone with your blood type. It is
difficult to give you the exact time that you will wait. This is because we do not know
when an organ that is a good match for you will be available.

It is important to remember the following while you wait:

1. Live your life to the fullest that you are able. Do not wait by the phone, but rather,
do as much as you can, ensuring all the time that we are able to reach you if we
need to.
2. You must ensure the transplant team has the up to date contact information to
reach you if a kidney and pancreas becomes available. Provide all relevant
information including cellular phones, alternate telephone numbers. Give the team
up to date information if you move or change jobs.
3. Tell your transplant coordinator if you are going away for the weekend or on
vacation. Give them the numbers where they can reach you if a transplant
becomes available.
4. Do all you can to stay healthy while you wait? Exercise if you can, even if all you
can manage is short walks. Eat a good diet, and follow the diet plan you dietician
has given you. If you are overweight, try to lose weight. Obesity increases your
surgical risks.
5. If you are ever ill, either with a bad cold or an infection or other complications
related to dialysis, let your Transplant Assessment Coordinator know. Your
dialysis nurse will also keep them informed, but it's good if you communicate
directly with the transplant coordinator yourself. Illness usually means you go on
temporary hold. When the illness is resolved, you will be reactivated after review
with the transplant physician.

32 Kidney/Pancreas Transplant Manual

Staying Healthy While You Wait
Vaccinations

Vaccinations are important for your health. We recommend:

™ A flu shot every year in the fall. You can get this from your family MD or a health
clinic
™ The Pneumovax vaccine every 5 years
™ Hepatitis B Vaccine or TwinRix (hepatitis A and B combined). Except for
recipients who have previously been exposed to or immunized for Hepatitis B. Ask
your coordinator
™ Varicella Vaccine (chickenpox) is recommended for any adult who tests negative.
Except for recipients who have previously been exposed to or are immunized for
Varicella. Ask you coordinator.

Dentist - Good oral hygiene is important before transplant. Regular check-ups and
cleanings are recommended.

Smoking - All transplant recipients are REQUIRED to be smoke free (tobacco and other
substances) for a period of at least 3 months prior to listing. If you are having problems
with quitting and staying smoke free, speak with our social worker or coordinator who
can recommend programs that can help.

Travelling/out of town trips - If you need to travel outside approximately 3 hours

outside of your normal residency, please speak with your coordinator. You may need to
go on hold on the list while you are away.

33 Kidney/Pancreas Transplant Manual

CHAPTER FIVE – The Call
The Call for Transplant
When a kidney and pancreas become available from a deceased donor we need to contact
you right away.

Once you are chosen as the most suitable recipient, the transplant programs recipient on
call coordinator will work to reach you by calling your contact numbers in this order

™ home phone number

™ alternate phone numbers that you provide
*Messages will be left where answering machines are available. *

Time is critical when an organ becomes available. If the coordinator cannot reach you
after 1 hour, another recipient must be selected.

If you are paged, call the number that appears on the pager window.

If you are unable to reach the person who paged you, contact the Transplant Inpatient
Unit at 416-340-5163. Ask to speak to the Charge Nurse.

Tell the nurse that you are waiting for a kidney/pancreas transplant and your pager went
off. The charge nurse will put you in touch with the recipient on call coordinator.

Refusing to come in when called for transplant will mean that you are immediately
place on hold and must contact you transplant coordinator to discuss you situation.

The call to come into hospital for transplant may come at any time of the day or night.
The recipient on call coordinator will identify themselves and asks you a few questions.
They will ask:

™ How are you feeling?

™ If you have any fever or flu symptoms
™ If you have had an recent surgery, blood transfusions or infections
™ In you are taking any antibiotics or have had any new medications prescribed
™ If they have no concerns regarding your present condition they will ask you to
come to hospital as soon as possible.

Do not drink or eat anything from the time that you are called in for transplant. It is
very important that you follow these instructions.

34 Kidney/Pancreas Transplant Manual

Coming to the Hospital
Once you are called in for kidney/pancreas transplant there is an urgent need to make
sure you arrive at the hospital quickly and are ready for surgery.

™ It is your responsibility to arrive at the hospital when called

™ Estimated time of arrival will need to be discussed with the coordinator on call
™ If you live outside the Toronto are, specific plans need to be made ahead of time
™ If weather or traffic delays your trip to the hospital, call the transplant in-patient
unit to advise them of the situation. 416-340-5163

We expect you to arrive at the hospital as soon as possible after getting the call for
transplant. We want you to arrive safely to hospital.

Depending on the time that you are called to the hospital, you will either go to the
Admitting Department or the Emergency department. The coordinator who calls you
will tell you which entrance to use.

Between 7 am to 11 pm Monday -Friday go to:

Admitting Department
Toronto General Hospital, 200 Elizabeth St., Ground Floor, East (Eaton) Wing
Between 11 pm and 7 am Monday – Friday & Weekends go to:
Emergency Department
Toronto General Hospital, Elizabeth St. Entrance
Once you arrive at the hospital, you will be admitted to the transplant unit where the
nurses will prepare you for surgery.

We will:
™ Do blood work and a chest x-ray
™ Start an intravenous line (IV)
™ You will not be given anything to eat or drink

35 Kidney/Pancreas Transplant Manual

What to Bring to Hospital?

Bring these items to hospital:

™ Toronto General Hospital blue identification card

™ Ontario Health Care (or provincial health card from another province)
™ An accurate list of all medications or bring the medications with you in their
original packages

After your surgery, you will go to the Acute Care Unit on the 10th floor of the Clinical
Science Building. You do not need any of your personal belongings here, and we want to
lessen the risk that such items are lost in hospital.

Personal belongings will not be needed until you are transferred back to the Transplant
Unit on the 7th Floor. At this later time, your family may bring personal items to hospital
such as:

™ Toiletries, i.e. soap, shampoo, comb, toothbrush etc.

™ Dentures, hearing aids or glasses
™ Your drug card if you have one
™ A pair of slippers with a closed in heel or running shoes
™ Lip and skin moisturizer (the hospital tends to be very dry)
™ A small overnight bag
™ A bathrobe that opens all the way down the front

Do not bring:

™ Any valuables such as rings, watches or jewelry

™ Large amounts of cash
™ Any large electrical equipment that needs to be plugged in (you may bring an
electrical razor or hair dryer)
™ Laptop computers

36 Kidney/Pancreas Transplant Manual

CHAPTER SIX – Your Transplant Surgery
The Surgical Phase
When you are ready for surgery, one of our staff will take you to the pre-operative care
unit. Here, an operative room nurse will come to see you and later, take you into the
operative room. Once you are settled in the operating room, the anesthetist gives you
your aesthetic to put you to sleep. While you are asleep, your transplant team will put in
several drains, lines and tubes. We will talk about these in the post-operative phase.

37 Kidney/Pancreas Transplant Manual

The Surgical Phase
When you are ready for surgery, one of our staff will take you to the pre-operative care
unit. Here, an operative room nurse will come to see you and later, take you into the
operative room. Once you are settled in the operating room, the anesthetist gives you
your aesthetic to put you to sleep. While you are asleep, your transplant team will put in
several drains, lines and tubes. We will talk about these in the post-operative phase.

Your family can wait in our waiting room until your surgery is over. This is located on the
3rd floor of the clinical science building. The nurses will direct your family during your
surgery. Your surgeon will talk to them once the operation is finished.

™ Your surgery will take approximately 5-6 hours

™ Your incision will be in the middle of your abdomen. It will be approximately 10-
15cm long.

™ Attaching your new kidney: The surgeon places your new kidney in your left
side; the artery and vein from your new kidney (renal artery/renal vein) is attached
to the iliac artery and iliac vein which also supplies blood to your leg. The ureter
(the tube that takes urine away from your kidney) is attached to your bladder. The
surgeon places a stent (small plastic hollow tube) in your ureter to lessen the
chance of leaking or obstruction. This will be removed 6 weeks after transplant.

™ Attaching your new pancreas: The surgeon places your new pancreas in your
right side; the artery and vein from your new pancreas is attached to the iliac
artery and the inferior vena cava. The duodenum is attached to your intestine.

™ You will have 1-2 drains (Jackson-Pratt drains) in your abdomen to help drain
excess fluids away from your new organs.
™ If you are a peritoneal dialysis patient, your PD catheter will be removed during
the surgery.

38 Kidney/Pancreas Transplant Manual

The Post-Operative Phase
After your transplant, your new kidney may or may not function immediately.

™ If your new kidney works immediately, you will not need dialysis any more.
™ If your kidney does not work immediately, you will continue on dialysis until your
new kidney recovers from being moved. Once it starts to work dialysis will not be
needed.
™ Having dialysis treatments will not prevent your kidney transplant from
functioning.
™ In most patients, the new pancreas begins producing insulin immediately and
there is no need for injections to control blood sugar levels.
™ You will have blood tests every day. This tells us how your transplants are
working and gives us the information that we need to adjust your medications
properly.
™ You will have other tests to check your transplants, such as an ultrasound.

Your family can wait in our waiting room until your surgery is over. This is located on the
3rd floor of the Munk building. The nurses will direct your family during your surgery.
Your surgeon will talk to them once the operation is finished.

After your transplant surgery, you will be in the hospital for 7-10 days. You will receive
care in several different places. The chart below shows where you will be at different
stages of your care.

Stage of your care Where you will have your care

Getting ready for transplant Multi-Organ Transplant Unit

Immediately after your transplant Post Anesthetic Care Unit (PACU)
When you are staring to recover Multi-Organ Acute Care Unit
Completing your recovery Multi-Organ Transplant Unit

You begin your hospital stay on the Multi-Organ Transplant Unit then go to the
operating room. Immediately after your transplant surgery our care team will take you to
the Post Anesthetic Care Unit (PACU). Here you will have your blood pressure,
breathing and other things checked.

39 Kidney/Pancreas Transplant Manual

Once you wake up from the aesthetic, we will take you to the Multi-Organ Acute Care
Unit (ACU). You will be on a heart monitor and blood pressure machine; many
intravenous and pumps will be giving you medications. The average stay in the ACU is 2-
3 days. While you are in the ACU, your family is invited to visit you for short periods.

When you are ready to leave the ACU, we take you to a regular room on the Multi-Organ
Transplant Unit. This is where you will stay for the rest of your time in the hospital. All
of our new transplant patients stay here.

During your time in hospital, we request that you pick one person to be your family
spokesperson. This person is responsible for calling to see how you are doing. Then all
other family members and friends can call your spokesperson. This will help us make
sure that we are giving information about you to the right person. It will also allow the
nursing staff the time they need to take care of you and other patients.

Pain Management
Recipients are often concerned about whether they will have pain after surgery and how
that will be dealt with. Here are the answers to some of recipients more commonly asked
questions. Feel free to speak to your coordinator if you have any further concerns.

Will I have pain after surgery?

Yes, most recipients have pain after surgery. Pain medicine is a priority in your care. It
will help relieve your discomfort; you can expect to feel pain in the area of the incision.
You may also feel stiffness and aches in other areas. We encourage you to use the pain
medicine. It will help you start moving around, sitting, and walking sooner. This is an
important part of your recovery.

How will my pain be managed?

We will work with you to manage your pain. Since you will be taking pain medicine only
for a short period of time, you do not need to worry about becoming dependent on it. You
will monitored daily by pain specialists in the hospital to ensure that your pain control is
enough to ensure you can still move comfortably. You will have an intravenous that is
connected to a patient controlled analgesia (PCA). This pump holds the pain medication.
When you feel like you need something for pain, you press the button attached to the
PCA pump. The pump delivers pain medication through your IV.

40 Kidney/Pancreas Transplant Manual

Can I overdose on pain medication?

The patient controlled analgesia (PCA) has a safety feature that we set to stop you from
getting too much medication. We program a safety timer called a lockout.

Are there side effects of pain medications?

Some recipients have side effects from pain medication. They can include nausea,
vomiting, sleepiness or itching. If any of these happen to you, tell your nurse.

What happens when I don't have an IV?

Once you able to drink fluids, we will give you pills to help control your pain. Pills take
longer to work than IV medication. This means that it is important to tell your nurse
when you are beginning to feel uncomfortable.

How else can I control my pain?

Relaxation breathing – gets the attention away from your pain because you are focusing
on your breathing. You take slow deep breaths, in through your nose, and out through
your mouth.

Visualization – Visualization involves imagining yourself without pain. To begin, close

your eyes and imagine yourself in a place or time that brought you happiness. It may be
on a beach, in a forest, anywhere that brings you peace.

Massage – Massage can help to decrease your pain. Massage is something your family or
partner can do to help relieve your pain. Gently rubbing your shoulders, back or arms can
relieve tension.

Delirium
Delirium is a condition which causes some patients to become confused in their thinking.
Patients who are hospitalized are at a greater risk for developing delirium. Delirium can
occur after major trauma such as a surgery or with disturbances in the balance of the
blood. As well, delirium is a physical problem (a change in the body) that can alter one’s
psychological state (change in how the mind works). Delirium can start over a period of a
few days and will often improve with treatment.

41 Kidney/Pancreas Transplant Manual

Clinical care staff monitor for delirium every shift however it is important for patients
and families to be aware of symptoms and report changes in behavior to their clinical care
provider to ensure early detection. Often, subtle changes in behavior are best recognized
by patients and those who know them best. Below is a checklist that can help to identify
common signs & symptoms of delirium.

What are the signs and symptoms of delirium?

Check for these common signs and symptoms of delirium:

Disorganized thinking
Saying things that are mixed up or do not make sense
Difficulty concentrating
Easily distracted or having difficulty following what is being said
Memory changes
Not able to remember names, places, dates, times, or other important information
Hallucinating
Seeing or hearing things which are not real
Having delusions
Thinking or believing things which are not true or real
Feeling restless
Not able to stay still, trouble sleeping, or climbing out of bed
Changing energy levels
Changes from being restless to being drowsy or sleepier than usual

The caregiver should notify the nurse or physician if they notice any of the above changes
in their loved ones.

42 Kidney/Pancreas Transplant Manual

The Hospital Stay
Multi-Organ Acute Care Unit - The ACU is on 10A Munk Building. You will be
admitted here for 2-3 days as your condition improves.

What to Expect in the ACU - You will have several monitors and pieces of equipment
attached. These include the heart monitor, IVs, pumps and urinary catheter. These will
gradually be removed as you get better.

Visiting the ACU - Visiting is still limited to immediate family only, TWO people at a
time. There is a designated rest period in the ACU is from 3pm – 5pm. No visiting is
allowed during this time. Please refer to the signs posted on the doors. You are asked to
check in at the nursing desk for security reasons.

Multi-Organ Transplant Unit - You will complete your recovery on the MOTU on 7the
floor, Munk Building. The staff will help you recover, gain strength, and learn how to
manage with your organ transplant.

The MOT has private and semi-private rooms. Private rooms are first given to recipients
based on medical needs. For example, if a recipient needs isolation, they will be given a
private room first. Otherwise private rooms are given on a first come first served basis.
Even if you have private coverage, this does not mean that you will be in a private room if
none are available. Our priority is your medical needs. Your request for accommodation
will be taken into consideration whenever possible. Recipients who need a private room
for medical reasons, but do not have insurance coverage; do not pay extra for their room.

Sometimes we need to move recipients from room to room. This can be unsettling and
inconvenient for you. We move recipients only when we need to in order to meet the
needs of all our patients. We take the right precautions to make sure that all our
recipients receive the best care possible.

What to expect from the transplant unit - The multi-organ transplant unit (MOT) at
Toronto General Hospital includes recipients who have recently had a liver, bowel, lung,
heart, kidney and pancreas transplant, who have been readmitted for various medical
reasons or who are waiting for transplant.

43 Kidney/Pancreas Transplant Manual

Staff of the Multi Organ Transplant Unit
Nurses -The nurses on the MOT unit are specially trained to care to transplant patients.
They work 12 hour rotating shifts.

Medical/Surgical Staff -The surgeons, fellows and residents will see you each day while
you are in the hospital. The doctors may change during your hospital stay.

Nurse Practitioners -Nurse Practitioners have advanced training and a graduate degree.
They work with the transplant team to assist in your care and recovery.

Other Staff -You will meet other staff during your recovery on the unit including a
physiotherapist, social worker, and pharmacist. They are an important part of the
transplant team in getting you ready for discharge home.

Guidelines of the Transplant Unit

™ Visiting hours are from 10 am to 9 pm.

™ All visitors must sign in at the reception desk and wear a 'visitor' sticker while on
the unit. This is for patient safety.
™ We recommend only two visitors in a recipient’s room at one time. We encourage
the recipient and family to focus on recovery at this time. If there are more people
who would like to visit, this can be done in the visitor's lounge or another part of
the hospital.
™ Children under 12 are discouraged from visiting in the recipient’s rooms because of
the risk of infection to the child. An adult must supervise children who are
visiting. If children are restless visitors will be asked to visit with the recipient in
another part of the hospital.
™ Staying overnight for family and friends if not allowed on the transplant unit.
™ Visitors for recipients in isolation must fully respect the precautions
in place to protect the recipient, themselves, and other people on the unit. This
may mean wearing a gown, gloves and/or mask when entering the room.
™ Visitors with signs of fever or the flu are not allowed on the unit.
™ Visitors are asked to wash their hands on entering and leaving the recipient’s room
and the Transplant Unit. Hand sanitizer is available throughout the hospital.
™ Visitors may be asked to temporarily leave a recipient's room in order for staff to
provide personal care or discuss confidential matters with the recipient. Visitors
may also be asked to leave if the recipient in the next bed needs extra medical care.

44 Kidney/Pancreas Transplant Manual

Flowers

Cut flowers or plants are not allowed on the transplant unit. They can carry a significant
infection risk to transplant patients.

Planning for Discharge

Members of the kidney/pancreas transplant team will see you daily. You and your family
will be advised several days in advance of your expected discharge date. Please make sure
that all preparations have been made for you to go home. Your discharge team will help
the process of transfer, provide you with further information and answer any questions
you may have.

The First Two Weeks

After your transplant we will focus on:

1. Monitoring your kidney and pancreas function

2. Watching for signs of rejection and infection
3. Adjusting your immunosuppressive medications
4. Recovery and rehabilitation
5. Teaching you about living with a transplant
6. Reassurance

Monitoring for Rejection

Rejection happens when your body's immune system recognizes your new organs as
foreign. If rejection happens and is left untreated, it can damage your transplant. Blood
tests will be done frequently, and possibly biopsies will be needed to monitor for
rejection.

Blood Clots (thrombosis)

Thrombosis is a blood clot in one of the deep veins in the body. It is an early complication
that can occur within 24 hours of a kidney/pancreas transplant. A thrombosis in one of
your own veins can be treated with medication designed to thin the blood. A thrombosis
in the transplanted pancreas itself usually results in pancreas failure and it could be
removed.

45 Kidney/Pancreas Transplant Manual

Pancreatitis

Pancreatitis is an inflammation (swelling) of the pancreas and is common in the first few
days after surgery.

Symptoms of pancreatitis include:

™ A dull pain in your abdomen

™ Nausea (feeling sick)
™ Vomiting
Eye Disease

Most patients notice their vision gets worse in the first three months after a pancreas
transplant, and then it starts to improve after 2-3 months. Steroids are a part of the
immunosuppressant treatment any pre-existing cataracts may get worse following a
transplant.

Fluid Retention

Fluid retention (edema) is more likely to occur for several days after a simultaneous
kidney and pancreas transplant. This can cause swelling of your feet and ankles.

Abdominal Abscess

An abdominal abscess is a serious complication that can occur on to six months after the
surgery. Symptoms include abdominal pain and a high temperature. A computerized
tomography (CT) scan will often be used to determine whether an abdominal abscess is
present. They can be treated using a combination of antibiotics and surgery to drain
away the collection.

Adjusting Immunosuppressive Therapy

After your transplant you will start immunosuppressive drugs. These are drugs that stop
your immune system from rejecting your new kidney and pancreas. It is important that
we have you on the right doses of these drugs. It is normal to have many changes in your
drugs until we find the correct balance.

46 Kidney/Pancreas Transplant Manual

We will adjust your dosages based on:

™ Blood test results

™ Symptoms
™ Side effects to the medications
™ Biopsy results
Education and Teaching

During your 10 days in hospital, the transplant unit nursing staff and your transplant
team will give you information about taking care of yourself now that you have a new
kidney and pancreas. We will help you to recover from your surgery and teach you how
to return to your normal activities.

Rehabilitation

As you begin to feel better from your surgery, the nursing staff and the physiotherapist
will help you to slowly increase your activity. Day by day, you will do more and more.
This will help you as you go through the healing process.

Reassurance

As you recover, we will answer your questions. We will address your concerns. Please
ask us if you have questions and tell us if you are wondering about anything.

After Discharge

You will be expected to attend clinic once per week at first. There may also be additional
unscheduled clinic appointments depending on your health. Blood work will be required
twice per week at the Toronto General Hospital for the first two weeks to ensure the
drug levels in your body are adequate. Blood work will eventually be completed locally at
a LifeLabs location. Your coordinator will help you locate one close to your home.

Limitations at the Time of Discharge

You will not be able to lift anything that weight more than 10 pounds for the first three
months post transplant. This is to ensure that your incision heals well and limits your
risk of developing a hernia.

47 Kidney/Pancreas Transplant Manual

Patient Education
We believe that it is very important for you to have the information and knowledge to
care for yourself at home after your surgery. There are 2 key areas which we focus on –
these are the self-medication program and self-care and monitoring education. Every
patient participates in both of these programs and we encourage you to have a support
person attend with you.

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CHAPTER SEVEN – Going Home after Transplant
Medications
All transplant patients are required to take medications every day for the rest of their
lives. This section details some of the common drugs that are prescribed after transplant
and special instructions that will need to be followed if you are taking these medications.
It will also describe the various educational programs and tools that you can use to help
you learn more about these medications.

Your Home Medications

When you are admitted to the hospital, your Transplant Pharmacist will speak to you to
obtain a complete home medication history. It is important for you to bring in all of your
home medications including all prescription medications and any over-the-counter
products, eye drops, puffers, creams, etc. If you have a medication list, please bring this in
as well. Your Transplant Pharmacist will review all of your home medications with you to
make sure that everything you need is ordered for you in the hospital. There may be many
changes to your medication regimen after your transplant. Your Transplant Pharmacist
will provide you with a medication schedule. They will review all the changes with you to
help you understand how to take your medications correctly at home. You will receive
prescriptions for any new medications. If you are re-admitted to the hospital for any
reason after a transplant, it is still important that you bring in all of your home
medications as described above. This will help your Transplant Pharmacist to ensure that
you continue to receive all of the medications you need while in hospital.

The Self Medication Program

After your transplant, you will be taking medications to help prevent rejection and
manage other health issues. The Self Medication Program is designed to help you learn
more about your transplant medications so that you will be able to take them correctly
and safely when you go home.
After your transplant you will attend a Self-Medication Class taught by one of the
Transplant Pharmacists. Your family members or support person can attend with you.
These classes are usually held on the Transplant Unit every Monday, Wednesday and
Friday afternoon. You must attend a class before you can be discharged from the hospital
after your transplant. During your recovery in hospital, your nurse and pharmacist will
make sure you are scheduled to attend a class. Plan to attend a class as soon as you are
transferred to the Transplant Unit.

49 Kidney/Pancreas Transplant Manual

In the Self Medication Class you will learn about:
™ The different transplant medications you will be taking
™ Why you need to take these medications
™ How to take them properly
™ The side effects that may occur with each medication

In these classes the Transplant Pharmacist will answer any medication-related questions
you may have. Once you have taken the class, you will be responsible for taking some of
your transplant medications on your own. You will be given a one week supply of each
medication to keep at your bedside. You will be given a special form to record when you
have taken each dose. Your nurse and pharmacist will check your progress daily. This
will help you to better understand your medications and get into a regular routine. At the
end of the week, your medication bottles will be collected and refilled. When you are
ready to leave the hospital, you will be given prescriptions for all of the medications you
will need to take at home.

Completing the Self Medication Program is an important step towards going home and
your participation is vital to your successful discharge.

The Transplant Pharmacy Website

There is a lot of new information to learn and process around the time of transplant.
Important questions about the transplant medications may arise before transplant, while
in hospital, and even long after a transplant. Your Transplant Pharmacist will answer
these questions and assist you in learning about your new medications while you are in
the hospital. We have also developed some online programs and tools that can be
accessed at any time on the UHN public internet site that will help you learn more about
your transplant medications.
The Transplant Pharmacy website is located on the UHN public Internet site. To visit
the website, please follow these instructions:
1. Go to www.UHN.ca
2. Click on the “our programs” link
3. Click on “Multi-Organ Transplant”
4. Click on the “Out-Patient Pharmacy” link

On the website you will find answers to Frequently Asked Questions regarding Managing
Your Medications and Life After Transplant

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Transplant Medication Information Teaching Tool (TMITT)
The Transplant Medication Information Teaching Tool (TMITT) is an interactive
internet-based teaching program to help you and your family or support person learn
more about your transplant medications. This tool is flexible and designed to allow you to
learn at your own pace by selecting the specific medications and material you want to
learn about.

Some of the features include:

™ Content that is divided into brief and easy to follow ‘lessons’

™ Ability to customize your own learning experience
™ Unique audio-visual format
™ Interactive quiz questions to test your knowledge
™ Printable information summaries for each medication

Common Post-Transplant Medications

Information on common post-transplant medications can be found in Appendix 1 at the
back of the manual. Please refer to these information sheets for details regarding your
specific medications. These are medications that may be prescribed for you after
transplant. You may also need to take other medications that are not discussed in this
manual.
Your Transplant Pharmacist will teach you about your transplant medications in the Self
Medication Class. They will also review all of your medications with you when you are
discharged from the hospital and will give you a medication schedule to follow when you
are at home.
You will not be taking all of the medications listed here. Your transplant team will
choose the combination of medications that is best for you. You may also be prescribed
other medications to prevent or manage side effects from the anti-rejection drugs.
Medications to treat common conditions such as high blood pressure, and osteoporosis,
are not described here.

While Taking Immunosuppressive Drugs

Side effects from medications are common, especially right after your transplant. Your
body is adjusting to the new organ, as well as many new medications. Everybody
responds differently to the medications. It will take time for your transplant team to
establish the right drug combination and doses for you.

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During the first day or two after transplant surgery, it is normal for recipients to:

™ be tired
™ be confused and disoriented
™ have difficulty concentrating, and
™ have difficulty sleeping

It is important to remember that your transplant team expects these side effects and are
trained to deal with them. Adjusting your medications or adding another drug may help
to reduce side effects. Talk to your transplant team if you have questions or concerns
about your symptoms.

Drug interactions

Many drugs can interact with your transplant medications. Before you take any new
medications including any over the counter products or medications prescribed by a non-
transplant doctor, you MUST speak to your transplant team. For example, some
antibiotics, non-prescription cold medications or herbal remedies can interact with your
transplant medications to cause unwanted effects.

Vitamins/herbal remedies
If you would like to take a multi-vitamin or any herbal remedy, please talk to your
transplant team first. Herbal remedies are like drugs and may interfere with your
medications so proper precautions need to be taken.

Pain Medications
Do not take pain relief medications known as NSAIDs (non-steroidal anti-inflammatory
drugs). These include ibuprofen (the active ingredient in Advil and Motrin products);
naproxen, which is found in Aleve and Naprosyn. If you need to take medication for pain
or a headache, acetaminophen (Tylenol) is usually a safe choice. Talk to your transplant
team before taking any other pain medication.

52 Kidney/Pancreas Transplant Manual

Self-Care and Monitoring at Home
As you recover from your transplant, it is important that you know what to watch for at
home and what important issues you should report to your transplant coordinator. You
will be going for regular blood tests and attending clinic as well and further information
is obtained by these assessments. Part of the information you are given is covered by 4
video presentations which you and your family are required to watch. The rest will be
covered by the discharge nurse and this written information.

Complications are not uncommon, and most can be treated by procedures and medication
adjustments. Early detection of complications and avoiding them if possible are important
to the success of your transplant.

1. Monitoring for Rejection

Your immune system protects you from foreign proteins such as bacteria and
viruses. Your immune system also recognizes your new liver as a foreign protein
and will try to reject it. Immunosuppressive medications are meant to prevent
this, but it is difficult to know exactly which medications and what dose to give
you to prevent this complication from ever occurring in you. Rejection is less
likely to occur if you take your medications correctly, and do your blood tests
with the correct timing, but it can still occur. Having a rejection episode does not
mean your kidney or pancreas are destroyed. We do try to avoid rejection if at all
possible as it results in the need for additional medications. Lab test results are
the key way we monitor for signs of rejection. The signs and symptoms we ask
you to watch for at home and to report are:
™ fever of 38 C or more (check your temperature periodically for the first month)
™ fatigue
™ dull ache in the area of your abdomen where the your transplants are
™ sudden weight gain of a kilo or more in 24 hours (weigh yourself daily if you
have scales)

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2. Monitoring for Infection
Your immune system also protects you from infections. Your immunosuppressive
medications interfere with your ability to fight infections, thus detecting and
treating infections promptly is important. Signs and symptoms of infection that
we ask you to watch for at home and report are:
™ fever of 38 C or more (check your temperature daily for the first month and
thereafter when you feel unwell)
™ chills and flu-like symptoms
™ redness and pain around your incision
™ redness and pain on any part of your skin - such as your legs especially if the
skin is broken
™ cough - especially with colored sputum
™ pain when you pass urine
™ diarrhea
™ rash or sores

It is important to take precautions to avoid infection. The most important thing

you can do is remember to wash your hands. This is the single most important
way to avoid infection – after using the bathroom, after touching doors in the
mall, grocery carts etc. You can carry a small bottle of hand sanitizer to use if a
sink is not readily available. Avoid contact with people you know are sick or who
have infections. This does not mean that you can’t go out to public places such as
restaurants, church or malls – but remember to wash your hands. You will get the
same type of infections such as colds as people without transplants. We do not
recommend that you take antibiotics unless we are sure you have an infection.

3. Activity
Remember the following about activity after discharge:
™ You can shower – even before your incision staples are removed. We do not
recommend that you take a bath until your incision is completely healed.
™ You should not lift more than 10 pounds for the first 3 months – lifting more
than this amount may cause stress on the incision and result in a hernia. For
the same reason avoid abdominal strengthening exercises or upper body
exercises such as sit-ups and push-ups for the first 3 months. This means that
even grocery bags must not weigh more than 10 pounds.
™ If you have small children you will not be able to lift them for 3 months
™ You can walk as soon as you are able and this is excellent exercise. At first you
may only be able to walk short distances but the goal should be to gradually
increase the distance and pace at which you go.

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4. Avoiding Skin Cancer
Transplant patients are at increased risk for skin cancer as a result of taking
immunosuppressive medications. It is important to remember that the sun
exposure you have had in the past is an additional risk factor for developing skin
cancer. It is therefore important to decrease additional risk by taking precautions
against sun exposure. The following are important points to remember:
™ Avoid sun exposure between the hours of 10:00 AM and 3:00 PM when the
sunlight is most intense
™ Use sunscreen when you are going to be in the sun at any time – use a product
with a sun protection factor (SPF) of 30 for good protection.
™ Select a product that blocks both UVB (shorter rays) and UVA (longer rays).
For example PABA only filters UVB rays.
™ Consider using a stronger product on very susceptible areas – face, ears, scalp
™ Use a lip balm with sun screen
™ Wear a hat with a wide brim
™ Apply the sunscreen 30-60 minutes before going outside
™ Reapply sunscreen if swimming or perspiring profusely
™ Overcast days do not protect you – 70-80 % of the UV rays still come through
™ Wear UV-filtering sunglasses – UV light can cause cataracts
™ Outdoor winter activities such as skiing can still expose you to sun damage
™ Be a mole-watcher and report concerns – watch for moles that grow or change
color, watch for moles with irregular borders, watch for moles that are itchy or
ooze.
™ Report any new skin lesions that are growing, which scale or bleed

5. Nutrition
™ Diet is an important part of helping you rebuild your muscles and to help with
healing after surgery.
™ Before your transplant you may have been on a very salt restricted diet to try to
avoid fluid retention. Following your transplant, salt restriction can be less
strict although we still advise that you are careful about the amount of salt in
your diet as it may contribute to high blood pressure – a common complication
post-transplant.
™ Your immunosuppressive medications may contribute to the development of
high cholesterol.
™ We advise you to follow a healthy diet such as Canada’s Food Guide. You can
get a copy from the discharge nurse or look it up on the internet.

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Planning for Discharge
Communication after Discharge
We have a special communication system called “Easy Call” that we use both to receive
messages from you and also to send messages to you after transplant. One of the
secretaries from the clinic will meet with you and review the system before you go home.
Important points about the system to note:

™ This is an efficient system that can be accessed from anywhere in the world at any
time of the day.
™ The system will not work if you have a rotary phone or if you have “call privacy”
on your phone.
™ If English is not your first language you must have someone who speaks English
and is able to access messages for you.
™ We pick up messages from you from 8:00 AM to 4:00 PM Monday to Friday. You
can leave messages at any time.
™ We can send you messages by activating the computer to call your phone with a
“hail” or “urgent” message. We use this when we want to tell you about a
medication change or an appointment. Your phone will ring hourly until you pick
up the message, but will not ring between 10:00 PM and 08:30 AM.
™ You should also check regularly for messages – in the first 3 months check daily
and thereafter check weekly as well as a couple of days after a blood test.
™ We will still call you directly if we need to discuss something with you in greater
detail – for example if you report an illness. If you want us to call directly, then
leave this information with your message.
™ If you change your telephone # you must let us know right away or the system will
not work.
™ DO NOT USE EASY CALL in an EMERGENCY – After hours if you need
immediate advice or have an urgent health problem call.
™ Telehealth Ontario @ 1-866-797-0000 or go to your nearest emergency
department.
Make sure that another family member or friend knows how to use the system

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Out of Town Patients
If you live more than 2-3 hours outside Toronto, then you will be advised to stay in the
city for the first few weeks after discharge if you are able to do so. This period is a time
when you need to be closely monitored and it is a time when complications are common
so it is safest if you can stay nearby. If you need a list of accommodations located near the
hospital our social worker can provide you with one. Planning for this should take place
before you are admitted for transplant.

Home Care
If you have a dressing on your incision or have a special reason to need a nurse to visit,
then we can arrange a visiting nurse. This is not a routine practice for all patients. Each
patient is assessed at the time of discharge regarding the need for home care.

Paying for Medications

As discussed previously, every patient is expected to pay for their medications when they
are discharged and discharge can’t be delayed because of issues related to drug coverage.
All patients except seniors and those who receive a monthly drug card as part of their
disability benefits are expected to be registered with Trillium before their surgery. If you
have private insurance you will need to have the insurance information for the pharmacy.

Transportation
It is your responsibility to make arrangements for a ride home from the hospital by 11:00
AM on the day of discharge. You will also need to plan for rides to clinic and to the lab for
blood tests. It is also likely that you will need to make extra trips to hospital for
additional blood tests or scans after discharge. These test arrangements are often made
suddenly and you need to have a plan about how you will travel to the hospital should
one of these situations arise.

Clinic and Blood tests after Discharge

You will be given a date and time for your first clinic visit before you go home. You will
also be given a schedule for lab tests that need to be done prior to the clinic visit. We will
give you a new blood requisition for your lab as the tests that are done may be different
and will also include a drug level each time. At each clinic visit you are given further
instructions to guide you until the next clinic.

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Post-Discharge 'to do' List
Complete your “Contacts” List
Please complete this list and bring it to your first clinic. This is important so that we have
accurate phone information so that we can contact you when necessary. This list also
includes the information about your pharmacist and family doctor.

Complete Medic Alert Bracelet Form

If you need assistance completing this form, you can bring it to your first clinic. We do
recommend that you have a Medic Alert bracelet.

Thanking Your Donor family (see Appendix 3)

It is important to do this when it feels right but it is very meaningful to the donor family
to receive a note from you. If you need assistance, please ask us in clinic.

Expectations Post Kidney/Pancreas Transplant

In addition to your regular clinic visits, you will be followed post-transplant with specific
blood tests at 3 months, 6 months and yearly thereafter. These include yearly glucose
tolerance tests, abdominal ultra sounds, chest x-rays, and cardiac testing, including
echocardiogram and stress tests. These tests are part of our program and help us ensure
that your general health is monitored closely.

We depend on your commitment to the program.

Annual Check Ups

You need to take care of your whole body, not just your new organ and therefore annual
health examinations (check-ups) with your family physician are very important. Women
require yearly gynecological check-ups with annual PAP smears and breast cancer
screening done. Men should be checked annually for testicular cancer and enlargement of
the prostate gland.

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Clinic
Location: 12th Floor Munk Building (Munk Elevators)

You will be given a date and time for a follow up appointment to see your transplant
doctor and nurse coordinator in clinic. Generally, patients are seen within a week after
discharge but this can vary slightly, depending on your post-operative course in hospital,
length of stay and general health. We initially see our new transplant patients every 1-2
weeks in clinic. Clinics become less frequent as your health stabilizes over time.

It is important to attend all scheduled appointments, as routine clinic assessment is an

essential part of your follow-up. If you need to change your appointment, please call Easy
Call (416-351-0793 + your PIN #), at least 72 hours in advance. Missed appointments or
“No Shows” will be documented in your chart.

We ask that you bring the following to your clinic appointments:

™ Your OHIP card and blue hospital card

™ Your medication list.
™ A list of the medications which require renewal prescriptions
™ Contact information (see previous page) &/or changes in contact information.
Once you are further out from your transplant date, it is important to keep us
updated with any changes to your personal information, new family doctor,
change in pharmacy etc.
™ A list of concerns or questions.

We will review the following in clinic:

™ We will ensure your medications and medication list match with the list in your
chart. We will assess for side effects and effectiveness of these medications.
™ We will adjust medications if required.
™ Review your most recent blood work.
™ Review any questions or concerns you may have.
™ Physical assessment to assess fluid retention, wound healing, blood pressure etc.

™ Staples are usually removed two weeks after surgery.

™ Review the plan of care until your next clinic appointment.

59 Kidney/Pancreas Transplant Manual

At the end of every clinic you will be given:

™ A prescription - for your transplant medications, which should provide enough of

a supply to last until your next scheduled appointment. It is important to drop off
your prescriptions at the appropriate pharmacy after each clinic. If you don’t need
a particular medication filled, simply ask the pharmacist to keep the prescription
``on file``. When you need a refill, please call the pharmacy directly.

™ An Appointment for your next clinic -You will be asked to take your clinic chart
to the reception desk, where your will be given a card with the date of your next
appointment and a schedule for your blood work.

™ New lab requisition(s) for your local lab – each requisition is valid for 6 months.

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Monitoring and Tests in the Post-Transplant Period
Regular blood work
It is essential to help us monitor your kidney and pancreas transplant and overall health.
We are able to assess for the following by monitoring your blood work.

Rejection
An episode of rejection of a kidney or pancreas transplant is detected by blood work. A
rejection episode may also be accompanied by other symptoms such as an increase in
temperature but often no visible signs or symptoms are present. Doing your blood work as
advised by your transplant team is vitally important in detecting this complication early.

Assess Drug Levels

We have guidelines for the blood drug levels we aim for. Early after transplant you will
need higher blood drug levels as this is the time you are at a greater risk for an acute
rejection. Over time, this risk becomes slightly less and we usually can reduce the target
level you need to avoid rejection and reduce the risk of side effects. Medications can only be
adjusted safely if the blood work has been done regularly and with correct timing depending on the drug
you take. If you are not sure what correct timing is, please ask us for advice.

Drug side effects

The absence of rejection will indicate that you are adequately immunosuppressed but we
also watch for side effects of these medications by reviewing your blood work. We
monitor for drug side effects such as, low white blood cell counts and increased
potassium.

Blood work on Clinic day

New transplant patients require blood work on the day of clinic. We have a blood
technician in the clinic area on the 12th floor and blood tests are done soon after you arrive
in the clinic. We will let you know if we plan to do labs when we remind you about
clinic.

Please bring your morning dose of Tacrolimus to take after the blood work has been
drawn. (This applies to every set of blood work).

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Blood work drawn at the local lab (Lifelabs)
In between your clinic visits, you will be given a blood work schedule. Unless otherwise
advised, these labs should be drawn at a Lifelabs site close to your home. We urge you to
use Lifelabs as they have a computer link with Toronto General which enables our team
to see the majority of results the same day they are drawn. You can call Lifelabs at 416-
675-3637 or toll free at 1-877-849-3637 to find a location close to your home. You can also
find this information online at www.Lifelabs.com. Other labs are not linked to our
computer and results are not received as quickly. If a Lifelabs is not available in your area,
please discuss this with your coordinator prior to doing blood work at the local lab.

There are several different scans that may be ordered to investigate changes in your blood
work or clinical health. Some of the common ones we order include:

Abdominal ultrasound
If your transplant organ tests become elevated, this is often the first test which is ordered
to further assess if there is any change within the kidney or pancreas. This test uses
sound waves to detect any changes within the blood flow to the kidney and pancreas.

CAT (CT) Scans

CTs may be booked if there is a change in blood work or your health which require
further investigation. It is important to let your team know if you have any history of
reaction to seafood or intravenous dye as special preparation for the test may be required
prior to the test, or sometimes a different test may be necessary instead of a CT scan.

Glucose Tolerance Test

Six months post-operatively a 2 hour glucose tolerance test will be scheduled. This test
allows us to monitor your pancreas function, measure the insulin production and it’s
response to glucose in your blood stream. This test will be performed yearly post-
transplant.

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Care by Other Health Care Professionals
Family Physician or Primary Care Provider
It is important that you have a family doctor to provide your overall health care on an
ongoing basis. Initially, you will see your transplant team very regularly but it is
important to remember that we are your transplant specialists and our focus of care is on
your transplant.

We recommend that you see your family doctor within a month after discharge.

Anti-rejection medications should only be adjusted by your transplant specialist.

Family doctors may have questions about what medications are acceptable for you. We
have included a medication reference sheet (Appendix 5) as well as a summary of
information on vaccinations (Appendix 6) at the end of this manual for your own
reference and we will be forwarding a post-transplant care manual to your family doctor
through the mail. If your family doctor has other questions about medications we
encourage them to contact our office for additional information. Your family doctor will
also be copied on all blood work done at Lifelabs (your local lab).

Dentists
Good dental care is an important aspect of maintaining long term health, however, we ask
you to delay any routine care which includes hygiene appointments, until you are at least
3 months post-transplant. This is due to the high levels of immunosuppression and
increased risk of infection during this period. If there additional questions, the dentist
can contact us for additional information.

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Complications in the Early Post-Transplant Period
Rejection Episodes
The goal of immunosuppression is to prevent organ rejection. Rejection occurs when
your immune system recognizes the new liver as “foreign”. Your body then attacks this
foreign presence resulting in increased inflammation of the pancreas, commonly known as
rejection. The likelihood of rejection is greatest early after your transplant surgery, and as
such, you will require higher doses of the anti-rejection medications during this period.

To prevent rejection, it is important for you to take your medication as instructed and to
do your regular blood work.

Acute rejection may still occur despite careful attention to your medications, but it is
important to know that acute rejection is almost always successfully treated if diagnosed
early. Treatment for rejection may involve an increase of anti-rejection medications
and/or intravenous steroids (prednisone) given in our outpatient day unit. In some cases,
admission to hospital is required to treat the rejection with more potent intravenous
immunosuppressive drugs.

Here are a few more facts about rejection:

™ Rejection is common after transplantation. 15-20% of all transplant patients have

1 or 2 episodes of rejection
™ Rejection is confirmed by a pancreas or kidney biopsy and monitoring for signs
and symptoms of rejection
™ Rejection must be treated promptly
™ If you experience rejection, it does not mean that you will lose your transplant or
that it will be permanently damaged.

Wound Infection

Your incision is an area for potential infection until it heals. As noted earlier in this
booklet, your risk for infection is increased as a side effect of your anti-rejection
(immunosuppressive) medications. Your incision will be examined at each clinic
appointment but it is important for you to monitor and report any increase of redness or
swelling, pus along the incision or fever to your transplant coordinator. While the staples
are still in and until the incision is healed, you may have a shower but avoid baths unless
the water comes to below the incision line.

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General Infections

When you are on immunosuppressive drugs, your body cannot fight infection as well as it
could before. This increases you risk of getting an infection. Common places for you to
get infections are in your lungs, and urinary tract. The information below will help you to
fight infection:

™ Good oral and personal hygiene are important to help to fight infection.
™ Eat well, get plenty of rest and exercise regularly to increase your resistance to
infection
™ Do not go near people who are sick or have infections, especially during your first
3 months after transplant.
™ Watch any broken skin for signs and symptoms of infection.
™ Call your transplant team immediately if you have flu-like symptoms.

After your surgery it will be difficult to know whether or not the discomfort experienced
are from the surgery or from a possible rejection. Once the incision has healed, you should
not normally feel pain. If you experience a brief feeling of pain or tenderness, it is usually
due to a muscle pull or spasm. This is not serious. If you have prolonged discomfort, call
you transplant coordinator. It may be a sign of infection or rejection.

Biopsies

A pancreas or kidney biopsy is a procedure where your doctor takes a tiny piece of your
transplant graft and sends it for testing. He inserts a needle through your skin into your
transplant to get this tiny specimen. Your team will talk to you about the risks. One of
the main risks is that any biopsy can cause bleeding. To prevent this you must not take
aspirin or blood thinners within 5 days of the biopsy.

™ This procedure is generally carried out in the interventional radiology department

at Toronto General Hospital, under ultrasound guidance.
™ You will be able to go home on the same day as your biopsy, so please bring an
escort to take you home
™ Wear loose clothing so that you are more comfortable after your biopsy
™ To prepare yourself for your biopsy you need to stop eating and drinking for 4
hours before you come to the hospital for your procedure.
™ The procedure takes about 30 minutes

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Long-Term Complications

Rejection Episodes
Although it is more common in the early post-transplant period, rejection can occur at
any time – even many years after your surgery. Two things which you can do and which
are important in trying to avoid rejection are taking your immunosuppressive
medications exactly as prescribed and doing blood test monitoring as instructed.
Remember that other medications including herbal medications, as well as grapefruit and
pomegranate juice can interfere with the absorption and metabolism of
immunosuppression meds. It is important that you confirm that any new medication you
are prescribed does not interact with the ones we prescribe.

Signs of rejection as previously reviewed in this manual; however, it is possible to have

rejection without symptoms and that is why it is vital that you continue monitoring your
transplanted organs by doing your blood work as advised. Abnormalities can be detected
in blood test results when there are no other symptoms present.

Acute rejection can be treated as described in ‘early post-transplant complications’.

Sometimes just adjusting your immunosuppression medications or their doses can restore
normal kidney and pancreas function and stop the rejection process. It is important that
you do blood level testing of immunosuppression medications accurately with
Tacrolimus. Your tacrolimus level should be taken 24hrs after you have your morning
dose of Advagraf. If levels are not done accurately your medication doses could be
adjusted when in fact they should not be adjusted.

Chronic rejection can also develop – this can occur if labs are not monitored regularly or if
medications are missed. This type of rejection is much less common and more difficult to
treat. Missing doses of immunosuppression medications can result in chronic rejection. It
is important to know that the most common cause of late rejection episodes is the failure
to take your medications correctly.

The only way to confirm rejection is to do a pancreas or kidney biopsy.

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Hypertension (High Blood Pressure)
This health issue may be present pre transplant and is quite common post-transplant.
Left untreated, high blood pressure can lead to problems with your heart, kidneys and
brain i.e. ‘stroke’. Diet – reducing salt intake, exercise and weight control can correct
hypertension in some cases. Often, however medications are required.

High Cholesterol
Many factors can contribute to high cholesterol such as can age, hereditary factors,
diet/exercise and other medical conditions. Some of the anti-rejection medications may
also affect your cholesterol levels. We monitor your cholesterol with your scheduled
blood work. Regular exercise also helps reduce your cholesterol. If diet and exercise are
not effective, treatment with medication may be required. High cholesterol levels must be
treated as part of the health plan to decrease the risk of heart disease and stroke.

Hernias
Hernias can occur along the incision line if the layers beneath the skin do not heal
properly. This results in an area of weakness, where the abdomen appears to bulge. To
prevent the development of a hernia, do not lift more than 10 lbs. or do any abdominal
exercise for the first 3 months after transplant. If a hernia is problematic a year after
transplant, your team can refer you to a general surgeon to assess if a repair is appropriate.

Infections

Cytomegalovirus/CMV:
This is a viral infection you can get after transplant. It is most common in the first year
after transplant as that is when you are on highest doses of immunosuppression
medication, but can occur at other times. CMV is a virus most people have been exposed
to before transplant but if you were not (this would have been tested in your pre
transplant assessment) you would be at higher risk for developing a CMV infection after
transplant. Patients at higher risk for this infection are given medication to prevent this
for the first 6 to 12 weeks after transplant. Symptoms of CMV can be vague and can
include; fever/chills, extreme fatigue, diarrhea. If you are in a high risk group be on the
lookout for these symptoms particularly in the first few months after completing the
preventative medication. Contact your coordinator as soon as possible if you have these
symptoms. A blood test can be arranged to diagnose a CMV infection.

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Infection prevention

™ Frequent hand washing.

™ Avoid touching your face before washing your hands.
™ Avoid people you know have active infections, particularly in the first 3 months
after transplant
™ Good oral and personal hygiene
™ Practice a healthy lifestyle; eat well, get enough rest and exercise regularly
™ Get the flu shot every fall
™ Get the Pneumovax vaccine every 5 years

Osteoporosis
Osteoporosis or osteopenia are conditions where bones are weakened and more prone to
fracture. Prednisone, as well as other risk factors can make you more prone to this
problem. There are interventions to prevent or treat this. You most likely had a bone
mineral density (BMD) test to check for this pre transplant and should continue to be
monitored for this after transplant. We monitor your bone mineral density during the
first year post-transplant and if more convenient for you, we encourage further
monitoring through your family doctor's office.

Cancer
Transplant recipients have a moderately increased risk for developing cancers. This is
thought to be related to the effects of long term use of immunosuppression medications.
It is that much more important for a transplant recipient to have regular check-ups with
routine screening – the frequency of these tests would not differ from the non-transplant
population.

Heart Health

We will monitor your heart health on a yearly basis. This is to ensure that any possible
complications from long-standing diabetes can be dealt with in a pro-active manner. You
will be assessed by your cardiologist here at the Toronto General Hospital yearly if there
are issues present or every two years should your heart health remains stable.

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Commonly Asked Questions

Symptoms to Report to the transplant office

™ Fever of 38 degrees centigrade
™ Diarrhea (may be a medication side effect or a sign of illness) especially if
accompanied by cramping or with blood in the stool
™ Vomiting that lasts more than 12 hours (may affect your drug levels if you can’t
keep pills down)
™ New rashes
™ Itching
™ Pain, especially in your abdomen
™ Headaches
™ Dizziness
™ Cough and coloured sputum

Staple Removal
™ Usually removed 2 weeks after surgery
™ Removed by your nurse in the transplant clinic
™ Removal causes minimal discomfort as the staples only close the thin upper layer
of tissue – there are dissolving stitches in the muscle layers beneath the incision
™ Small supporting tapes called steri-strips are often placed on the incision for a few
days after the staples are removed
™ If there are stitches in drain sites, they are usually removed at the same time as the
staples

Driving
™ Discuss readiness for driving in clinic
™ Must not drive when still taking narcotic pain medications
™ Need to be sufficiently strong and flexible enough to move your leg/foot on the
pedals and be able to check your blind spot
™ If driving license was suspended pre-transplant this needs to be reactivated when
you are fit to drive post-transplant. This process may take several weeks.

Wearing Seatbelts
™ All patients should wear their seatbelt
™ If the belt causes discomfort where it crosses your abdomen, place a towel under
the belt
™ We will not provide letters for the police to excuse you from wearing the belt

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Exercise and Lifting Restrictions
™ You must lift more than 10 pounds for the first 3 months after your surgery
™ Lifting larger amounts may result in stress to your incision and can affect the
healing – this may cause a hernia in the incision
™ Walking is the best exercise – try to increase the distance and speed you walk
™ In winter, many people walk in malls to avoid icy surfaces and cold conditions or
they use a treadmill if they have access to one
™ You can use small weights of 1-2 pounds to increase arm strength but be careful
not strain your shoulder joints. They are prone to strain due to muscle wasting

Swimming
™ Swimming is excellent exercise once the incision is healed and you are strong
enough to be in the water
™ You can swim in public pools and lakes

Hot Tubs and Saunas

™ Both hot tubs and saunas can lower your blood pressure because of the heat
causing blood vessel dilatation
™ Either should be used with caution in patients with heart disease or if you take
blood pressure medications
™ Hot tubs can be contaminated with bacteria which can cause skin infections
™ Limit the duration you spend in hot tubs or saunas

Diet
™ You should eat a healthy diet and avoid junk food
™ Canada’s food guide provides excellent advice re foods, food groups and portion
sizes
™ It is not uncommon to gain weight after transplant and it is better to avoid this –
losing weight is as challenging for transplant patients as it is for everyone

Avoiding Infections
™ Hand washing is the single most effective way to avoid infections – wash after
using the bathroom, wash your hands after touching such things as grocery cart
handles or door knobs etc.
™ You can go to public places such as restaurants or malls as soon as you go home
from hospital as long as you wash your hands, there is no need to wear masks
™ Avoid people with obvious infections such as friends with cold or flu symptoms
but keep in mind it is impossible to avoid all infections. If members of your
household have infections, try to avoid physical contact but there is no need to
move out of the house

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Increased nasal secretions
™ Transplant patients all experience an increase in clear nasal secretions
™ This occurs especially when eating and when eating or drinking hot drinks and
food and when they eat spicy food
™ The cause is unknown but it does not mean you have a cold or infection
™ This may continue for life

Prescription renewals
™ We ask that you always get enough prescriptions in clinic to last until your next
clinic visit
™ If you do need a prescription before you come to clinic, then we ask you to give us
enough time to have the prescription signed and faxed
™ Check your bottles to see if there are repeats on the prescription before calling us
for renewals

Immunizations/Flu Shots/Pneumovax vaccine

™ We recommend that all patients receive the annual flu vaccine to protect from
influenza
™ We suggest that you be at least 6 months post-transplant before receiving this
vaccine as it will less effective when your medication doses are highest
™ We recommend that all patients get pneumovax which protects against one
particular kind of bacteria which causes pneumonia
™ People with normal immune systems receive this vaccine once in their life but in
transplant patients it needs to be given every 5 years
™ Transplant patients can receive some other immunizations but it is important to
remember that no vaccine with live virus or bacteria can be given.
™ It is believed that some vaccines may not be as effective as they are in those with
normal immune systems but that transplant patients do benefit from them
™ All immunizations and vaccines are given by the family doctor, we do not do
immunizations in the transplant clinic

Insurance Forms
™ We will complete disability insurance forms after transplant in the first 3-6
months after transplant
™ It will take at least 30 business days to have these completed

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Returning to Work
™ Most patients are ready to return to work 3 to 6 months after their transplant
surgery
™ This may vary somewhat depending on the type of work done prior to transplant –
for example if the work involved heavy lifting and the patient is very debilitated
prior to the surgery it may a little longer to get strong enough to return to work
™ Transplant patients can do any type of work – we have patients who work in
construction, nursing, teaching, medicine, farming and factory work
™ We usually recommend that if at all possible that the return to work be
“graduated” – part time for the first few weeks and gradually increased to full time
™ Many people are nervous about returning to work especially if they have been sick
for some time but one of the goals of transplant is to return patients to active lives
including work

Pain Medications
™ Most narcotic pain medications are safe and most people need some type of pain
medication in the first 2-4 weeks after surgery
™ It is important to gradually decrease this type of pain medication to avoid
becoming dependent on the pain meds
™ Tylenol (acetaminophen) is a safe medication to take for minor pain, headaches
etc in small amounts when necessary. The maximum amount of this drug in 24
hours is 2000 mg (equal to 6 of the regular 325 mg strength or 4 of the extra 500
mg strength)
™ You must not take anti-inflammatory medications (“NSAIDs”) such Advil, Motrin,
and ibuprofen – these meds are not good for your kidney and can cause stomach
irritation. If you uncertain if a medication you are considering is in this category
ask your transplant coordinator. Some drugs in this class are given by prescription
and should be avoided as well.
™ The transplant doctors will not prescribe any narcotic medications in clinic.

Over the Counter and Herbal medications

™ In general we do not recommend that you take herbal or naturopathic medications
because we are not certain of the effect they may have on absorption or
metabolism of the immunosuppressive medications.
™ These medications vary in the amount of active ingredients they contain and this
adds more uncertainty to their effect on your body
™ Stomach antacids are safe – use according to the package instructions
™ Some cold and allergy medications can affect your blood pressure or heart rate and
you should review the with the pharmacist or transplant coordinator before you
use them

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Medications to avoid
™ Most antibiotics are safe to use and the only group we try to avoid is the
erythromycin family of drugs because they affect the levels of your
immunosuppression. If it is essential that you have something in this group, then
please let us know as we may need to temporarily adjust the doses of your drugs
™ If you have diarrhea we do not recommend that you take anti-diarrhea
medications such as Imodium. There are many reasons to have diarrhea and the
cause of this needs to be assessed first before using these medications

Pets
™ It is safe to have pets such as cats and dogs in your home
™ It is better to avoid cleaning a litter box, but if you are the only care provider,
wear gloves when cleaning litter or picking up waste
™ Birds may carry various fungus and bacteria which can cause serious infections
and are not ideal pets for transplant patients
™ Fish and fish tanks may have bacterial and fungal organisms which can cause
serious infections. Avoid cleaning tanks and handling fish if possible but if
necessary wear gloves

Sexual Activity/Birth Control

™ It is safe to resume sexual activity as soon as you feel physically able after
transplant
™ Precautions for practicing safe sex (condoms) are important after transplant
because you are immunosuppressed and thus more prone to infection
™ The safest method of birth control in the first year after transplant is the barrier
method – condoms and contraceptive foam or jelly
™ Some oral birth control methods or intrauterine devices (IUDs) can be used after
transplant but this must be discussed with your transplant coordinator first

Pregnancy/Planned Parenthood
™ For female patients, it is possible to have children after transplant. However we do
not encourage you to get pregnant.
™ The rate of birth defects in the child is higher when an immunosuppressed patient
gives birth
™ It may be necessary to stop or change medications such as some blood pressure
pills as they can affect the baby’s development and growth
™ We monitor blood tests more often during pregnancy as drug doses may need to
be adjusted
™ If a male patient is considering a family a review of medications is helpful to
review any impact current medications may have on sperm

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Travelling
™ Before you consider travelling you should discuss it with your transplant care
team especially if the trip is outside Canada and it involves making reservations. If
a trip needed to be cancelled and we did not know about it, we would not be able
to verify you were given permission to travel when your health was stable
™ You should always purchase trip cancellation insurance
™ Things to consider include how long is your trip and how frequent are your blood
tests – you may have to do labs while you are away and this can be expensive and
will not be fully covered by our health insurance, or are there any upcoming tests
or appointments that conflict with the time you plan to be away
™ Trips to some locations place you at added risk for infections such as malaria. For
this reason we do recommend that you are seen in travel clinic at least a month
before your trip.
™ You should ask us to give you a “travel letter” – this is a summary of your
medications and lab results to carry with you. This verifies that you have a reason
for the medication you are carrying and provides basic information for health
providers if you become ill while you are away.
™ Make sure you have sufficient medication with you plus an additional 2 weeks in
case of a delay in your return
™ You must always put your medication in your carry-on luggage – your checked
luggage can get lost.

Smoking
™ Our policy is to remain smoke-free both pre and post-transplant.
™ Cancers related to smoking include cancer of the bladder, kidney, larynx, cervix,
stomach and pancreas
™ If someone in your family smokes we recommend that they not smoke in the home
or around you as there is also significant risk in second-hand smoke
™ These precautions also apply to marijuana

Telehealth Ontario
™ We are available to provide advice Monday through Friday during business hours
to answer your questions
™ Should you need advice after hours or on weekends or holidays, Telehealth
Ontario is a free confidential service available 24 hours a day where you can speak
to a registered nurse to get health advice and information.
™ We have given them basic transplant information as a reference for them
™ The telephone number to reach them is 1-866-797-0000

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Urgent Situations
™ If you experience chest pain, shortness of breath or symptoms of a stroke, you
need to seek urgent care by calling 911
™ For safety reasons, you will be taken to the nearest hospital and although you
always feel safer coming to Toronto General it is usually not safe to delay care by
coming downtown. Other centers are able to treat urgent situations such as these.
If the other hospital staff need additional information they can contact our doctor
on call for advice
™ If you develop a fever or other illness and feel weak and dizzy you should be seen
in your local emergency

Re-Transplant
™ In some cases a second transplant will be considered if the first graft is failing – or
if there was a circulation problem with the first graft
™ The same assessment tests are completed for a second graft as were done to see if
the patient is suitable for a first transplant
™ The surgery for a second transplant is more challenging for the surgeons because
of the scar tissue related to the first surgery

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Feedback
As a patient with us, we care about what you think. Your feedback is important to help us
improve the care we provide to our patients.
If you have any problems or concerns with the way in which your care was provided,
please tell us. In the hospital, you can speak with the Charge Nurse or the Nurse Manager
for the inpatient area. When discharged, you can speak with your transplant coordinator
or physician.
If you would prefer, the Patient Relations Department can help resolve issues. The Patient
Relations Department would be pleased to hear both your concerns and your
compliments.

They can be reached at:

Patient Relations Office
1st floor - Room 401
R. Fraser Elliot Building
Toronto General Hospital
Phone: (416) 340-4907

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Important Telephone Numbers

Contact Telephone Number

Emergency 911
Easy Call (416) 351-0793

Your Easy Call PIN

Pharmacy - Toronto General Hospital (416) 340-4075
Transplant Coordinator via Easy Call (416) 351-0793
Transplant Clinic (416) 340-4800 x 4113

Telehealth Ontario 1-866-797-0000

Locating – Toronto General Hospital 416-340-3155

Transplant In-Patient Unit 416-340-5163

Patient Relations – UHN 416-340-4907

Registered Dietician – EatRight Ontario 1-877-510-5102

Life Labs 1-877-849-3637

Transplant Assessment Office 416-340-4800 x 6637

Transplant Social Work Office 416-340-4800 x 5655

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78 Kidney/P
Pancreas Tra
ansplant Man
nual
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80 Kidney/Pancreas Transplant Manual
 Appendix 1 - Medication Profiles

ADVAGRAF® (tacrolimus extended release)

BRAND
GENERIC NAME REASON FOR USE
NAME
Tacrolimus extended ADVAGRAF® Tacrolimus is an anti-rejection drug. It works to
release Strengths: 0.5 mg, 1 suppress specific cells of your immune system in
mg, 3mg and 5 mg capsules order to prevent rejection of your transplanted
organ.

SIDE EFFECTS
1. INCREASED BLOOD PRESSURE
Your blood pressure will be monitored. You may require treatment with blood pressure
medications.

2. EFFECTS ON THE CENTRAL NERVOUS SYSTEM This can include trembling hands,
headaches, mood changes and trouble sleeping. This is usually related to the level of Advagraf® in
the blood and usually subsides with time as blood levels are decreased.

3. HARMFUL EFFECTS ON THE KIDNEY The level of Advagraf® in your blood will be closely
monitored and the dose will be adjusted if needed. Your kidney function will be monitored with a
blood test called creatinine.

4. GASTROINTESTINAL UPSET This may include stomach upset and diarrhea. The degree to
which this occurs is variable and will depend on how your body reacts with the medication

5. DIABETES (Increased blood sugar) Your blood sugar (glucose) levels will be monitored. You
may require treatment with medication if your blood glucose levels remain persistently high.

6. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people

who have active infections. Report any symptoms of infection such as fever, sore throat, chills, or
fast pulse to a doctor or your transplant team immediately.

7. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types of
cancers is higher. It is important to be aware of and report any changes in your body that could
indicate a problem.

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 PROGRAF® (tacrolimus immediate release)
GENERIC NAME BRAND NAME REASON FOR USE
Tacrolimus immediate PROGRAF® Tacrolimus is an anti-rejection drug. It
release Strengths: 0.5 mg, 1 works to suppress specific cells of your
mg and 5 mg capsules immune system in order to prevent
rejection of your transplanted organ.
SIDE EFFECTS
2. INCREASED BLOOD PRESSURE
Your blood pressure will be monitored. You may require treatment with blood pressure
medications.

2. EFFECTS ON THE CENTRAL NERVOUS SYSTEM This can include trembling hands,
headaches, mood changes and trouble sleeping. This is usually related to the level of
Prograf® in the blood and usually subsides with time as blood levels are decreased.

3. HARMFUL EFFECTS ON THE KIDNEY The level of Prograf® in your blood will be
closely monitored and the dose will be adjusted if needed. Your kidney function will be
monitored with a blood test called creatinine.

4. GASTROINTESTINAL UPSET This may include stomach upset and diarrhea. The
degree to which this occurs is variable and will depend on how your body reacts with the
medication

5. DIABETES (Increased blood sugar) Your blood sugar (glucose) levels will be
monitored. You may require treatment with medication if your blood glucose levels remain
persistently high.

6. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with

people who have active infections. Report any symptoms of infection such as fever, sore
throat, chills, or fast pulse to a doctor or your transplant team immediately.

7. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types
of cancers is higher. It is important to be aware of and report any changes in your body that
could indicate a problem.

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 PREDNISONE
GENERIC NAME REASON FOR USE
Prednisone is a cortisone-like anti-rejection drug. This
Prednisone medication works to suppress your immune system in
Strengths: order to prevent rejection of your transplanted organ.
5 mg and 50 mg tablets

SIDE EFFECTS

1. STOMACH UPSET OR IRRITATION Take prednisone with food or milk. An acid-reducing

medication may be prescribed. Report any severe symptoms or blood in your bowel movements to a
doctor right away.

2. WATER RETENTION May cause swelling of the face, ankles or hands. You may need to restrict
salt in your diet. A diuretic (‘water pill’) may be prescribed. This effect usually subsides as the dose is
reduced.

3. FACIAL PUFFINESS More common with higher doses. This usually subsides as the dose is
reduced.

4. INCREASED APPETITE Weight gain may occur if you overeat.

5. DIABETES (Increased blood sugar) Your blood sugar (glucose) levels will be monitored. You may
require treatment with medication if your blood glucose levels remain persistently high.

6. SLEEP DISTURBANCES, NIGHTMARES, MOOD CHANGES Take prednisone in the morning

to minimize the effect on your sleep. These effects usually subside as the dose is reduced.

7. BRUISING Your blood vessels may become more fragile which can cause easy bruising. Try to
protect yourself from injury.

8. OSTEOPOROSIS (Thinning of the bones) Your bones may become weaker which can increase
your risk of fractures. You may be advised to increase calcium in your diet, do a weight-bearing
exercise such as walking, or take calcium supplements or other medications to increase bone density.

9. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people who
have active infections. Report any symptoms of infection such as fever, sore throat, chills, or fast pulse
to a doctor or your transplant team immediately.

10. OTHER SIDE EFFECTS MAY INCLUDE Increased hair growth, acne, cataracts, or menstrual
irregularities.

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 SIROLIMUS (Rapamune®)
GENERIC NAMES BRAND NAME REASON FOR USE
Sirolimus Rapamycin Strengths: RAPAMUNE® Sirolimus is an anti-rejection drug. It
1 mg tablets works to suppress your immune system in
1 mg/mL oral solution order to prevent rejection of your
transplanted organ.
SIDE EFFECTS
1. INCREASED CHOLESTEROL LEVELS Your cholesterol and triglyceride levels may increase which can
lead to atherosclerosis and heart disease. Dietary changes or medications may be required to bring your
cholesterol levels down.

2. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored closely. Inform your
transplant team if you develop any symptoms of infection, if you feel very tired, or experience any unusual
bleeding or bruising.

3. SKIN RASH, ACNE OR MOUTH SORES A rash or acne may develop on your face or body. You may also
develop sores inside your mouth. Inform your transplant team if these effects occur and are bothersome.

4. GASTROINTESTINAL UPSET Stomach upset, diarrhea, or constipation may occur. The degree to which
this occurs is variable and will depend on how your body reacts with the medication.

5. SLOW WOUND HEALING Healing of wounds such as the incision from your surgery may be slow. Keep
your incision site and any other wounds clean. If any signs of infection occur such as increased redness,
swelling, or pus in the wound, report this to a doctor right away.

6. SWELLING OF THE HANDS, FEET, ANKLES OR LEGS You may develop fluid retention and swelling
of the extremities. If this occurs and becomes bothersome you should report this to your transplant team.

7. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people who have active
infections. Report any symptoms of infection such as fever, sore throat, chills, or fast pulse to a doctor or your
transplant team immediately.

8. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types of cancers is
higher. It is important to be aware of and report any changes in your body that could indicate a problem.

84 Kidney/Pancreas Transplant Manual

 CELLCEPT® (mycophenolate mofetil)

GENERIC NAMES BRAND NAME REASON FOR USE

Mycophenolate mofetil MMF CELLCEPT® Cellcept® is an anti-rejection drug.
Strengths: It works to suppress your immune
250 mg capsules system in order to prevent
500 mg tablets rejection of your transplanted
200 mg/mL oral suspension organ.
SIDE EFFECTS

1. DIARRHEA This side effect is common especially at higher doses. It can often be managed by
taking smaller doses more frequently throughout the day. This should only be done on the advice
of your transplant team.

2. STOMACH UPSET Nausea, vomiting, and abdominal pain can sometimes occur. These effects
usually decrease with time. Report this to your transplant team if any of these become
problematic.

3. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored closely.
Inform your transplant team if you develop symptoms of infection, feel very tired, or experience
any unusual bleeding or bruising.

4. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people

who have active infections. Report any symptoms of infection such as fever, sore throat, chills, or
fast pulse to a doctor or your transplant team immediately.

5. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types of
cancers is higher. It is important to be aware of and report any changes in your body that could
indicate a problem.

85 Kidney/Pancreas Transplant Manual

 MYFORTIC® (enteric coated mycophenolate sodium)

GENERIC NAME BRAND NAME REASON FOR USE

MYFORTIC® Myfortic® is an anti-rejection
Enteric coated mycophenolate drug. It works to suppress your
sodium immune system in order to prevent
rejection of your transplanted
Strengths: organ.
180 mg and 360 mg tablets

SIDE EFFECTS

1. DIARRHEA This side effect is common especially at higher doses. It can often be managed
by taking smaller doses more frequently throughout the day. This should only be done on the
advice of the transplant team.

2. STOMACH UPSET Nausea, vomiting, and abdominal pain can sometimes occur. These
effects usually decrease with time. Report this to your transplant team if any of these become
problematic.

3. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored closely.
Inform your transplant team if you develop symptoms of infection, feel very tired, or experience
any unusual bleeding or bruising.

4. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people

who have active infections. Report any symptoms of infection such as fever, sore throat, chills,
or fast pulse to a doctor or your transplant team immediately.

5. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types of
cancers is higher. It is important to be aware of and report any changes in your body that could
indicate a problem.

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 AZATHIOPRINE (Imuran®)

GENERIC NAME BRAND NAME REASON FOR USE

Azathioprine is an anti-rejection drug.
Azathioprine
IMURAN® (and It works to suppress your immune
Strength:
generics) system in order to prevent rejection of
50 mg tablets
your transplanted organ.
SIDE EFFECTS

1. STOMACH UPSET Upset stomach or vomiting may occur but usually decreases with time.
Report this to your transplant team if this becomes problematic. Take with food or milk to help
prevent stomach upset.

2. ABDOMINAL PAIN If you have abdominal pain which is severe or lasts for more than one
day you should report this to a doctor or your transplant team. Although uncommon, this may
be a sign of a serious problem called pancreatitis, or inflammation of the pancreas.

3. YELLOW COLORATION OF SKIN, DARK URINE These symptoms are rare but may be
a sign of liver damage. Report these symptoms to doctor or your transplant team as soon as
possible.

4. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored. Inform
your transplant team if you develop symptoms of infection, feel very tired, or experience any
unusual bleeding or bruising.

5. BLEEDING AND BRUISING Try to protect yourself from injury. Notify your transplant
team of any unusual bleeding or bruising.

6. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people

who have active infections. Report any symptoms of infection such as fever, sore throat, chills,
or fast pulse to a doctor or your transplant team immediately.

7. INCREASED RISK OF DEVELOPING CANCER The risk for developing certain types of
cancers is higher. It is important to be aware of and report any changes in your body that could
indicate a problem.

87 Kidney/Pancreas Transplant Manual

 COTRIMOXAZOLE (Septra®)

GENERIC NAMES BRAND NAME REASON FOR USE

Sulfamethoxazole/ Trimethoprim or SEPTRA® (and This drug is a combination of
Cotrimoxazole generics) two antibiotics. It is used to
prevent or treat a type of
Strengths: pneumonia called PCP. You are
Single strength tablet (400/80 mg) more susceptible to this
Double strength tablet (800/160 infection when your immune
mg) system is suppressed.
SIDE EFFECTS
1. SKIN RASH You may be allergic to the ‘sulfa’ part of the drug. If this occurs, stop taking this
medication and report this to your transplant team. A different drug may be prescribed.

2. SENSITIVITY TO SUNLIGHT Your skin may burn more easily if exposed to the sun. Avoid
excessive exposure to sunlight and wear protective clothing or sunscreen products on all sun-
exposed areas, even in the winter.

3. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored. If this
side effect occurs your transplant team may ask you to stop taking this medication until your
blood counts recover. This should only be decided by your transplant team.

4. FEVER A fever is a temperature above 37.5°C or 99.5°F. Fever should be reported to a doctor
or your transplant team immediately. Fever may be a sign of infection, rejection or an allergic
reaction to this medication. Acetaminophen (Tylenol®) may be used to control the fever.

HOW TO USE THIS DRUG • This medication may be taken with or without food. • Take
this medication exactly as your doctor has prescribed. This may be once daily, or only on certain
days of the week, or in some cases twice daily. Always follow the instructions given to you by
your transplant team.

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 DAPSONE

REASON FOR USE

GENERIC NAME

This medication is an antibiotic. It is used to

prevent a type of pneumonia called PCP. You are
Dapsone Strength: 100 mg tablet
more susceptible to this infection when your
immune system is suppressed.

SIDE EFFECTS

1. SKIN RASH This may be a sign of an allergic reaction. If this occurs, stop taking this
medication and report this to your transplant team. A different drug may be prescribed.

2. SENSITIVITY TO SUNLIGHT Your skin may burn more easily if exposed to the sun.
Avoid excessive exposure to sunlight and wear protective clothing or sunscreen products
on all sun-exposed areas, even in the winter.

3. YELLOW COLORATION OF SKIN, DARK URINE These symptoms are rare but may
be a sign of liver damage or a problem with your red blood cells. Report these symptoms to
doctor or your transplant team as soon as possible.

4. FEVER A fever is a temperature above 37.5°C or 99.5°F. Fever should be reported to a

doctor or your transplant team immediately. Fever may be a sign of infection, rejection or
an allergic reaction to this medication. Acetaminophen (Tylenol®) may be used to control
the fever.

HOW TO USE THIS DRUG • This medication may be taken with or without food.
• Take this medication exactly as your doctor has prescribed. This may be once
daily, or only on certain days of the week. Always follow the instructions given to
you by your transplant team.

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 NYSTATIN

BRAND NAMES REASON FOR USE

GENERIC NAME
Nystatin NILSTAT®
MYCOSTATIN® This medication is an antifungal. It is
Strength: (and generics) used to prevent yeast infections in
100,000 units per mL oral the mouth (also known as oral
suspension thrush), which appear as white
spots or patches.

SIDE EFFECTS
• Since this medication is not absorbed into the body, side effects are very unlikely.
HOW TO USE THIS DRUG • This product is a suspension. Shake the bottle well before
taking each dose. • Measure the prescribed dose using the dropper supplied. • Swish it
around in your mouth for at least one minute then swallow. • This medication needs
contact time with the mouth and throat in order to be most effective. Do not eat or drink
anything for 20 minutes after taking nystatin. • Nystatin is usually taken 4 times daily. It is
easiest to take your doses after meals and at bedtime.

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 VALGANCICLOVIR (Valcyte®)

GENERIC NAME BRAND NAME REASON FOR USE

Valganciclovir VALCYTE® This medication is an anti-viral. It is
used to prevent infections caused by
Strengths: viruses such as herpes virus and
450 mg tablets 50 mg/mL oral cytomegalovirus (CMV). It may also
solution be used to treat infections caused by
CMV.
SIDE EFFECTS

1. DECREASED BLOOD CELL COUNT Your blood cell counts will be monitored. If this side
effect occurs your transplant team may ask you to stop taking this medication until your blood
counts recover. This should only be decided by your transplant team.

2. GASTROINTESTINAL UPSET Diarrhea, nausea, vomiting, or stomach pain may occur.

Taking the medication with food may prevent these side effects. If these
symptoms are severe or last for more than one day, report this to your transplant team.

3. EFFECTS ON THE CENTRAL NERVOUS SYSTEM This can include headaches or trouble
sleeping. Report these symptoms to your transplant team if they become troublesome.
Medications may be prescribed to help manage this.

HOW TO USE THIS DRUG • If your doctor has prescribed a once daily dose of this
medication it may be taken either in the morning OR the evening. Take the medication at the
same time every day. • If a twice daily dose of this medication has been prescribed, take it in the
morning AND the evening, approximately 12 hours apart. • Take this medication with food.

Your transplant team will adjust the dose of this drug according to your level of kidney function.

91 Kidney/Pancreas Transplant Manual

 PANTOPRAZOLE (Pantoloc®)

GENERIC NAME BRAND NAME REASON FOR USE

Pantoprazole PANTOLOC® (and This drug is used to prevent
generics) and treat heartburn, and
Strength: stomach or intestinal ulcers, by
20mg and 40mg tablets decreasing the amount of acid
produced by the stomach.
SIDE EFFECTS
• Side effects may include headache, constipation or diarrhea. • Generally this medication
is well tolerated. Contact your doctor if any side effects continue or are bothersome.

HOW TO USE THIS DRUG

• If your doctor has prescribed one dose of this medication every day it may be taken in the
morning or at night. If you experience heartburn during the night you should take this
medication at bedtime. • If it is to be taken twice daily, take it in the morning and at night.
• Doses may be taken without regard to meals.

SPECIAL INSTRUCTIONS
• Swallow tablets whole with a glass of fluid such as water or juice. • Tablets must not be
chewed or crushed.

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 RANITIDINE (Zantac®)
GENERIC NAME BRAND NAME REASON FOR USE
Ranitidine ZANTAC® (and This drug is used to prevent and
generics) treat heartburn, and stomach or
Strength: intestinal ulcers, by decreasing the
150 mg tablets amount of acid produced by the
stomach.
SIDE EFFECTS
• Side effects may include headache, dizziness, constipation, nausea and abdominal pain.
• Generally this medication is well tolerated. Contact your doctor if any side effects
continue or are bothersome.
HOW TO USE THIS DRUG
• If your doctor has prescribed only one dose of this medication every day, it may be taken
in the morning or at night. If you experience heartburn during the night you should take
this medication at bedtime.
• If it is to be taken twice daily, take it in the morning and at night.
• Doses may be taken without regard to meals.

93 Kidney/Pancreas Transplant Manual

 METHYLPREDNISOLONE (Solumedrol®)

GENERIC NAME BRAND NAME REASON FOR USE

Methylprednisolone Sodium SOLUMEDROL® (and This is an intravenous anti-
Succinate Strengths: generics) rejection drug. It works to
Various (injection only) suppress your immune system in
order to prevent rejection of your
transplanted organ. It may also be
used to treat an episode of
rejection.
SIDE EFFECTS

1. INCREASED BLOOD SUGAR LEVELS This medication may cause high blood sugar
(glucose) levels, which are difficult to control in patients with existing diabetes or those who
are prone to developing diabetes. Your blood sugar levels will be monitored. You may require
treatment with medication if your blood glucose levels remain persistently high.

2. SLEEP DISTURBANCES, NIGHTMARES, MOOD CHANGES These effects usually

subside as the dose is reduced.

3. WATER RETENTION May cause swelling of the face, ankles or hands. You may need to
restrict salt in your diet. A diuretic (‘water pill’) may be prescribed. This effect usually subsides
as the dose is reduced.

4. STOMACH UPSET OR IRRITATION An acid-reducing medication may be prescribed.

Report any severe symptoms or blood in your bowel movements to a doctor right away.

5. INCREASED SUSCEPTIBILITY TO INFECTION Try to avoid close contact with people

who have active infections. Report any symptoms of infection such as fever, sore throat, chills,
or fast pulse to a doctor or your transplant team immediately.

This medication is given through an intravenous (IV) line. It is commonly used in hospital right
before and after transplant. Prednisone is a very closely related medication which is available in
an oral tablet form. Most patients will receive a prescription to continue on oral prednisone
therapy when they leave the hospital after transplant.

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 RABBIT ANTI-THYMOCYTE GLOBULIN (Thymoglobulin®)

GENERIC NAMES BRAND NAMES REASON FOR USE

THYMOGLOBULIN® This is a potent intravenous
medication that may be used in the
first few days following a
Rabbit anti-thymocyte globulin
transplant to prevent rejection. It
Strength: 25mg/5mL injection
may also be used to treat an
episode of rejection.

SIDE EFFECTS

1. ALLERGIC REACTIONS This medication is derived from rabbit serum. Allergic reactions
are unlikely, but if they occur the drug will be stopped and antihistamines and steroids will be
given. Pre-medications are usually given before each dose to prevent allergic reactions.

2. FEVER AND CHILLS This effect is more common during the infusion of the first dose. Pre-
medication will be given and the drug will be infused very slowly in order to limit this effect. If
fever or chills do occur the infusion will be slowed or stopped temporarily. These effects do not
last long and will respond to treatment with acetaminophen (Tylenol®).

3. DECREASED BLOOD CELL COUNTS Your blood cell counts will be closely monitored
while you are on this medication. If a decrease does occur the dose of this medication may be
reduced or it may be stopped temporarily.

4. INFECTION This medication is a powerful anti-rejection drug and that will cause
suppression of your immune system. You will be much more susceptible to developing an
infection, both during treatment and for a period of time after the medication has been stopped.
To avoid the risk of serious infection this drug is used for the shortest period of time possible.
Try to avoid close contact with people who have active infections. Report any symptoms of
infection such as fever, sore throat, chills, or fast pulse to a doctor or your transplant team
immediately.

95 Kidney/Pancreas Transplant Manual

 GANCICLOVIR (Cytovene®)

GENERIC NAME BRAND NAME REASON FOR USE

CYTOVENE® This is an anti-viral medication
that is given intravenously to
Ganciclovir Strength: prevent and treat infections
50mg/mL injection caused by the herpes virus or
cytomegalovirus (CMV).
SIDE EFFECTS

1. DECREASED BLOOD CELL COUNTS Your blood cell counts will be monitored
closely. It may be necessary to stop or interrupt treatment until your blood cell counts
recover.

2. PAIN AT INFUSION SITE This medication is infused slowly through a large vein to
limit this effect.

3. EFFECTS ON THE CENTRAL NERVOUS SYSTEM This can include headaches or

trouble sleeping. Medications may be prescribed to help manage these symptoms if they
occur.
HOW TO USE THIS DRUG
• This drug is given intravenously (IV). In some cases treatment may continue for up to
several months. If this is necessary, a special long-term IV (midline catheter or L-Cath)
may be inserted so that you do not have to have multiple peripheral IVs inserted during
the course of treatment.
• Many patients may be converted to a very similar medication called valganciclovir
(Valcyte®) which is available in an oral tablet form. Your transplant team will determine if
this is an appropriate option for you.

Your transplant team will adjust the dose of this medication according to your level of
kidney function.

96 Kidney/Pancreas Transplant Manual

 ACYCLOVIR (Zovirax®)

GENERIC NAME BRAND NAME REASON FOR USE

Acyclovir Strengths: 200mg, ZOVIRAX® (and This is an anti-viral medication
400mg and 800mg tablets generics) used to prevent and treat
infections caused by the herpes
family of viruses, such as shingles
or severe cold sores.

SIDE EFFECTS

1. STOMACH UPSET, NAUSEA, VOMITING, DIARRHEA Taking this medication

with food can help to prevent these effects. If these symptoms are severe or last for more
than one day, report this to your transplant team.

2. EFFECTS ON THE CENTRAL NERVOUS SYSTEM Tiredness, headache, tremors or

confusion may occasionally occur. While still uncommon, these effects are more likely
with the use of higher doses of intravenous acyclovir. In rare cases acyclovir may trigger
seizures in those who have seizure disorders.

3. ALTERED KIDNEY FUNCTION This effect is rare and is more likely to occur with
use of intravenous acyclovir. You may be instructed to increase your fluid intake while you
are on this medication. If you experience any pain in your side (between ribs and hip) or
kidney area of your back, report this to your transplant team.
HOW TO USE THIS DRUG
• This medication is usually taken 3 to 5 times a day. Always follow the dosing
instructions given to you by your transplant team.
• This medication may be taken without regard to meals, although taking it with food can
help to prevent stomach upset.
• You may be instructed to increase your fluid intake while you are on this medication.
Your transplant team will adjust the dose of this medication according to your level of
kidney function.

97 Kidney/Pancreas Transplant Manual

Appendix 3 - Saying Thank You
Transplant recipients often wonder how to say “Thank you” to their donor.

If your donor is a friend or relative, saying thank you can be done in the traditional way.
When your donor is an anonymous person whose organs were donated by their family at
the time of their death, a “Thank You” can be difficult.

We encourage you to write to the donor’s family to express your thanks. Although it may
be a challenge to write a letter, many transplant recipients welcome the opportunity to
express their gratitude. We have also found that such thank you letters, or cards, can be a
comfort to donor families as they deal with their loss.

There is no right or wrong time to write to the family. Some recipients feel that they want
to write immediately. But you might need time to recover from your surgery before you
are able to write. We encourage you to write sometime within the first year after your
transplant.

Under the Human Tissue Gift Act, the government of Ontario requires we keep your
identity and your donor’s identity confidential. For this reason, we ask that you do not
include your name, where you live, your cultural background, religious affiliation or
workplace, or where you had your transplant in your letter. Some things you may want to
include are:
™ how long you waited for your transplant
™ how you felt while you waited
™ how you feel now
™ what you are looking forward to doing in the future.

Many recipients want the donor family to know that they appreciate the courage it took
to make the donation, and that the donor family is often in their thoughts.

The letter can be as long or short as you wish. Please remember this is a letter of thanks. If
you need some help with your letter, do please ask your transplant team for advice.

When your letter is complete, give it to your transplant coordinator in an unsealed

envelope so that it can be reviewed before being sent to the donor. Your coordinator will
then forward your letter to the staff at the Trillium Gift of Life program. It is the Trillium
Gift of Life staff that sends your letter to the donor family.
Occasionally donor families will send correspondence to recipients through the Trillium
Gift of Life Program. If this happens, your coordinator will let you know.

98 Kidney/Pancreas Transplant Manual

Appendix 4 - Medication Reference for Other Providers
Most conditions affecting liver transplant recipients are treated as they are in any other
patient with the following cautions and exceptions

Avoid • All NSAIDS – worsening of (subclinical) Tacrolimus-induced renal

dysfunction and G.I. irritation
• Macrolide antibiotics (e.g. Erythromycin) inhibition of drug
metabolizing enzymes in the liver with significant increases in the
Tacrolimus levels. Azithromycin seems to be an exception and has
minimal impact on the levels and thus is acceptable
Vaccines • NOT to receive vaccines with live virus or bacteria thus no herpes zoster
vaccine, MMR etc.
• Annual flu shot is recommended preferably after the first 6 months post-
transplant to improve benefit
• Pneumovax recommended q 5 years for all patients rather than single
dose in lifetime
Antibiotics • No contraindications except macrolides (see above) and rifampin.
Rifampin induces the drug metabolizing enzymes in the liver and
therefore causes a marked decrease in Tacrolimus levels. If it is used close
monitoring of the Tacrolimus levels and respective dose adjustment is
necessary
Cholesterol • Lipid lowering meds well tolerated
Rx • Agent we have most experience with is atorvastatin – start at lowest
possible dose due to potentiation effect with immunosuppressives , -
increase dose gradually if necessary
• Limited experience with rosuvastatin (Crestor), but has been used, again
starting with the lowest possible dose
HTN • Follow usual guidelines with some caution related to diuretics, ACE
inhibitors and ARBs due to commonly encountered baseline renal
dysfunction and risk for hyperkalemia
Gout • Colchicine in small doses the usual choice since no NSAIDs allowed:
Brief course of prednisone acceptable.
• If recurrent acute attack: Allopurinol acceptable.
Seizures • Many antiepileptics such as phenytoin and carbamazepine induce the
drug metabolizing enzymes in the liver and therefore cause a marked
decrease in Tacrolimus levels. If these drugs have to be used, close
monitoring of the levels is advised and respective dose adjustment if
necessary
Erectile • No specific transplant concerns, use usual risk assessment
Dysfunction

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Appendix 5 - Vaccine Reference
Inactivated/ live
attenuated Recommended before Recommended Monitor vaccine
Vaccine (I/LA) transplant after transplant titers

Influenza I Yes Yes * No

LA No No No

Hepatitis B I Yes Yes Yes

Hepatitis A I Yes Yes Yes

Tetanus I Yes Yes No

Pertussis (Tdap) I Yes Yes No

Inactivated Polio
vaccine I Yes Yes No

Pneumovax I Yes Yes ** No

N. meningitis
(MCV4) I Yes Yes No

Rabies I Yes Yes No

Human papilloma
virus (HPV) I Yes Yes No

Varicella (live-
attenuated;
Varivax) LA Yes No Yes

Varicella (live-
attenuated;
Zostavax) LA Yes No No

BCG LA Yes No No

Smallpox LA No No No

100 Kidney/Pancreas Transplant Manual

* In new patients we recommend that the flu shot be delayed until 6 months post-
transplant to improve response

** Repeat dose every 5 years

Reference: Danzinger-Isakov L, Kumar D et al. Am J Transplant 2009;9(Suppl 4):S258-

S262

Note: Reference Information courtesy of Dr. C. Rotstein MD FRCPC FACP, Co-Director

Transplant Infectious Diseases, University Health Network

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Special Thanks to…
The Pancreas Transplant Program Team

Dr. Mark Cattral, MD, MSc, FRCS(C) Dr. Jeffry Schiff, MD, FRCP (C)
Director, Pancreas Transplantation Medical Director, Pancreas Transplant
Professor of Surgery Associate Professor

Dr. Markus Selzner, MD Dr. Sunita Singh, MD, FRCP (C)

Transplant Surgeon Transplant Nephrologist
Associate Professor Associate Professor

Dr. Paul Greig, MD, FRCS(C) Dr. Ian McGilvray MD, PhD. FRCS (C)
Director, GI Transplantation Transplant Surgeon
Professor of Surgery Associate Professor

Margot Mitchell, MSW Dr. Peter H. Seidelin, MD, FRCPC

Social Worker Cardiologist

Andrea Norgate, RN, BScN, ENC(C) Robyn Beechey, RN, BScN

Transplant Coordinator Transplant Coordinator

Cynthia Godinez Narges Tzogas

Administrative Assistant Administrative Assistant

102 Kidney/Pancreas Transplant Manual