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Author Topic: Post transplant information  (Read 375 times)
MooseMom
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« on: January 13, 2020, 03:13:04 PM »

After reading iolaire's brilliant recent post transplant update, I am wondering how much information have you all, as transplant patients, been given about "trivial" issues that might crop up in your post transplant life?

I was in a bit of a fog when I left the hospital.  I had surgery on a Sunday morning and was home by Wednesday afternoon.  The hospital conducted several classes where you could learn about various things like your meds, how to write to your donor's family, and other stuff I don't remember.  Actually, the info given at the classes went in one ear and out the other as I think I was in a tac trough!

Anyway, I was given a big binder with sections on things like symptoms of rejection, which OTC meds are safe and which are not, which immunosuppressants are commonly prescribed, stuff like that.  Seven years on, I still refer to it from time to time.

So, my question is, what kind of info were you left with?  Has it proven adequate, or do you find yourself having to constantly call your clinic for information? 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #1 on: January 13, 2020, 03:31:34 PM »

I was just having a look at my post tx binder to look at the outdated info on the shingles vaccine.  The dead-virus Shingrix vaccine is new and is safe for tx people, so if you've just recently come home with your own "binder", take a look to make sure the shingles vaccine info is updated and correct!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SooMK
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« Reply #2 on: January 18, 2020, 10:33:45 AM »

Your inquiry is completely spot on. All the information I was given when I left the hospital was mostly for the first year after transplant and is not helpful now. I found that UPenn has a list of antibiotics and OTC meds for post transplant and I confess I have used it for OTC cold meds rather than call the clinic. I hate calling the clinic even when it's obvious I have to do it. If I call the clinic I might get an answer right away or they might never return my call. Or three people might return my call at different times not knowing I've already been contacted (fun times). Whenever possible I email my neph via the portal and he almost always gets back to me within 24 hours. I can't understand why there isn't a page on the hospital web site with some of the post-transplant guidelines (after the first year or so) that we all need to know. Don't even get me started with the non-communication between my specialists. I have no idea why the least educated person (me) is the filter through which everything must flow.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
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