Learning my new normal post Transplant, things that make me laugh!
I've been lurking here on Connect for a month or so learning. I was told by my pulmonologist (who did my heart cath to clear me for my liver tx) that he didn't need to see me until after the tx. He joked that the info I was about receive would be like "trying to drink from a fire hose", and that I didn't need him further complicating matters. I have a diagnosis of COPD and additionally was on O2 because of cirrhotic liver but pulmonary function was ok.
Anyway, as you know, he was SO correct. We had no idea what was coming at us!
My experience here has been similar, the information available can be overwhelming, but I've learned to pace myself, 1-2 hours a day when I feel like it! Especially with co-morbidities, which, it seems like most of us have.
I decided to post today because while grocery shopping earlier I learned something I needed to be aware of. I think I'm "ok" with guarding my immunity being compromised ie. masking when appropriate etc. But I have these epiphany's frequently, like today, while licking my fingertips to be able to open a produce bag. After not disinfecting the cart handle. Something I've done my whole life AND got away with it since I'm still alive. But can't take that risk anymore, or, more appropriately I choose not to take that risk! Hopefully the price I pay is merely the chill up my spine when I realized that this is just one more specific thing that no-one told us about. Because it's not possible to teach someone how to live. We have to learn some of it ourselves, but we do a great job of sharing what we've learned here in these discussions! I want to thank everybody here for sharing, I look forward to learning more and if I can contribute I'll be better for it.
I would be remiss if I didn't applaud my loving wife/caregiver. I wouldn't be here without her!🙂
By the way, I LOL when I realized what I'd done! In the produce aisle! I've always enjoyed these moments, and I credit being Nordic for that. I call them "Oly" moments.
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I take more Prograf now compared to when I first had my operation. I do everything that I can to reduce my chances. I am extremely anemic (had 2 blood transfusions in the past 2 months), which makes me more susceptible.
Good morning
Congratulations on your 8 month anniversary. Personally I wouldn't go anywhere without wearing a mask. You just never know and measles is rampant in the world now and as a transplant recipient you are extremely vulnerable. Extremely vulnerable. I don't go anywhere without wearing my mask. I am not going to risk damaging the gift that I was given. But if you feel confident in your area that people have covid and don't have measles and are all vaccinated and I say do what you need to do.
For what's its worth a sample size of one here on masks & meds. I had my 1 year call with Mayo a few months back. Live in a suburb. I had wore my mask faithfully out of the house the first year (to my wife's chagrin) . I asked on the call if I still needed to wear one and we discussed. The Mayo doctor was very uncommittal.
He said it is up to the person. He would neither tell me to continue nor to stop. I said how about if I don't day to day but do if I am at a health care location, at a gathering or a crowd. He said if that's what I wanted to do. I could not read if he thought that was overkill nor not enough. A month later with my local doctor she had the same take. Would not suggest for me to continue nor to stop. I think each case is different depending on how the first year went as to catching bugs etc.. Anyone not sure for there personal status I would ask my Mayo person on there take. On my meds after transplant at one point I was up to 27 (meds, not pills). But after a year now down to 12. Will be on TAC and Valcyte when CMV comes back for life. But could go down to 6 or 7, not all directly transplant related, after another good year .
My husband has incorporated daily exercise into his post-transplant routine. Weightlifting, as well as cardio, is part of his normal care. I can say that this has appeared to make a huge difference for him. As you stated, the mental health aspect cannot be overstated. He is strong and feeling great! We celebrated his 2-year kidneyversary on February 23.
I'm 8 months post tx and I'm just now starting shop at our small town store w/o a mask...my medical appt's I definitely wear one!
I may resume wearing one at the store though, and use one if there's going to be a crowd that I can't avoid!
That has to be tough having your values fluctuate so much. Do they adjust meds?
....and I am happy for YOU! One year anniversary is a biggie and the window of hopefully smooth sailing for the years to come - and living your life even forgetting you had a transplant.
That's wonderful , I am very happy for you. I just recently celebrated my one year anniversary.
I am beating the odds too, this month will celebrate 27 years(1998) with a liver transplant needed because of hepatitis C. Within weeks of transplant the hep C started damaging the newly transplanted liver and after 16 years I had stage 4 cirrhosis again. That is when the cure for hep C was approved for patients with transplants(2014). I was treated then, responded wonderfully. The hep C is gone for good and my liver has regenerated to stage 0.
It’s been bumped up to 10 years now I don’t think about it much you have a amazing story
Yes I agree. When I had my transplant they only had a 5 year survival. I had 2 young boys and my only prayer was that I could survive long enough for them to graduate from high school. Now they are both grandfathers. I am have been very blessed. I am still doing ok. A few bumps in the road but I am very thankful.