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← Return to Safety after transplant: When is it safe to go to events, to travel?
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Safety after transplant: When is it safe to go to events, to travel?
Transplants | Last Active: 9 hours ago | Replies (10)Comment receiving replies
@dotygl Hi. I am so very sorry for what you guys are going through. Boy when you say life is not fair you are telling the truth. I had a full liver transplant two years ago. After 2 months in AZ Mayo sent us back home to CO. And while I have had issues (still have stenosis, CMV, blood clots, etc.) it sounds like I have been much luckier than you guys have been. My only reaction to TAC was headaches at first and gut issues still. But Mayo has reduced my dosage of TAC a number of times over the last two years. While I have been careful always and do the right things I have only been sick with stuff I caught two times in two years. I now go to the stores , grocery shopping, ball games, we have even hosted a party with 30 friends and family at our house. No issues. I get out of the house every day. I grieve and feel guilty that you guys are 99% isolated. My only two thoughts are one Mayo told me when my headaches were bad that they could try another immunosuppressant other than TAC. I said no if TAC was what they recommended. Maybe you guys could ask about that ? Also they have steadily reduced my TAC from 4 mg per day ( 2 am, 2 pm) to now 1 a day (.5 am, .5 pm). If your husband gets sick from the low immune system maybe they could reduce your dosage ? Mayo may have other rabbits up their sleeve to try if things are going so badly. I am so sorry for what you guys are going through. Prayers up. Best of luck.
Replies to "@dotygl Hi. I am so very sorry for what you guys are going through. Boy when..."
@craigcraig HI and thanks for writing and your caring spirit. We did not use the Mayo clinic and live on east coast. I use this site for connecting with others with kidney transplant. It took 14 months to get the meds 'right' so my spouse with kidney blood labs were good. Changing meds now not something discussed due to rejection episode at month 2.5 after surgery too. The organ functions alright now is another reason to not play around with drug changes and doses. He gets blood work every 3 mos and sees a nephrologists every 3 mos. From my academic global online research papers research, quite a few people have issues being on these meds to keep kidney from rejecting. The focus for doctors though is the organ functions and not your quality of life. I'm learning from good research studies, not everything is as good as you think it will be as you wait for the organ. We are still waiting for improvement and given up to be honest. I see things worsening as time goes on and we feel we live in a snow globe. I think many people have a good or adequate experience being on the meds, but everyone's body chemistry is not the same/exact. The research I've done for years has revealed to me alot and the early new medical change where no immunosup drugs are needed is where science is working towards. He tells doctors chemo 9 mos was a picnic compared to this journey. He never misses doses of meds and I'm learning that is a common thing after 5 yrs taking them. For assorted reasons peopl;e stop taking their meds all the time or every other day. Side effects, finances, and more are reasons. I could write a book about the past 7.5 yrs. I wish you well on your journey.
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@craigcraig I had gut issues with Tacrolimus as well. My PCP recommended Nature's Bounty Probiotic 10 and the NY Presbyterian Liver Team gave me permission to take it. Now I rarely have diarrhea and my energy level is much higher.