I'm humiliated to have worries so common they've been noted, analyzed, catalogued and given a name. I've never been one to follow trends. Square-toed shoes. Ruffled swags at the window. Songs by Pitbull. Why start now?
If 79.6% of patients, following heart surgery, have trouble sleeping, damn it, I mean to sleep soundly! I hope to regard the soon-to-be non-organic components of my heart with... well, I'll aim for forbearance. Not sure if I can summon up actual affection. I will not sneak my finger to my wrist to check my pulse repeatedly; obsess on the rhythm of my heart; dash into pharmacies to test my blood pressure. I will trust that the surgeon has well and truly repaired my dysfunctional valves with snazzy foreign metal implants. (I should probably stop thinking of them as foreign.)
I still don't have a surgery date and begin to suspect that I won't have my new heart for Xmas. I'm appalled to imagine how many people have hearts more frail than mine--since they apparently need surgery more quickly than I do. Do they all have Skumin Syndrome?
I am ever-grateful that I write fiction because that's the best way to keep my mind occupied. None of my characters need heart surgery which means--while I'm working on my novel--that I completely forget that I do.
Skumin? At least it's an unusual word. Snazzy - I like that term for the new parts. And where is that lovely balcony?
ReplyDeletekw
Mahdia... along the coast of Tunisia. I would so love to go somewhere warm and sunny. Soak in those rich blues and greens. Have to rely on memory for now.
ReplyDeleteI find the ticking of my Heart very therapeutic, like counting sheep it puts me asleep. I am very thankful for the technology and professionalism of the surgeons from NYU, they saved my life( 10 years and still beating strong). If there is one criticism. its the accelerated ticking that is so loud when intimate with your partner that can be a little uncomfortable.....:-)
ReplyDeleteYou have the best attitude! I, too, hope to feel consoled by strong, regular ticking--which is not the case right now.
ReplyDeleteThough not to be distracted the way you mention...
I have another symptom for skumin syndrom. My situation was a life or death one, I suffered an aortic aneurysm caused by a defective aortic valve from birth. My problem for years after the life saving operation was, not the symptoms listed or the rest of my life taking medication but the comments from friends and strangers who I told my story to was " your so lucky, there's a reason your still alive today". I beat myself up for years wondering or trying to find " This Reason". I now am back to my normal happy go lucky self and resigned myself to the fact that I was just lucky and fortunate to have NYU at my doorstep
ReplyDeleteThe problem with looking for a reason for why your life was saved is that, then, you have to ask yourself the reason for why you were given a defective aortic valve in the first place. ???
ReplyDeleteI agree: be glad you were (and continue to be) lucky and had access to the right doctors.
I have Skumin syndrome, too!
ReplyDeleteBest of luck to you, but please ignore wikipedia articles written by unknown individuals with no knowledge of western medicine. As far as I can tell there is no Skumin syndrome. Sure folks have all sorts of things to deal with before and after heart surgery. But in general patients are better not worse after surgery. I seriously doubt this undocumented 76% figure anomymously posted to wikipedia. The Skumin entry may acutally disappear soon if valid sources are not found. Cheers, MD in Boston
ReplyDeleteNo worries. I have no intention of succumbing to a Wiki illness. I'm doing fairly well after surgery... though I must admit that the incessant clicking of the valves sometimes makes me grit my teeth. Still looking for that elusive position where I won't hear them when I'm trying to fall asleep.
ReplyDeleteA new article about Skumin syndrome:
ReplyDeletehttp://aan.sagepub.com/content/early/2013/10/16/0218492313493427
Andrea Ruzza. Nonpsychotic mental disorder after open heart surgery. Asian Cardiovascular and Thoracic Annals October 16, 2013
Andrea Ruzza. Nonpsychotic mental disorder after open heart surgery. Asian Cardiovascular and Thoracic Annals October 16, 2013.
I can tell there IS Skumin syndrome.
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