An update here after a positive visit with my nephrologist yesterday. I’m now on three month visits and monthly tacrolimus tests. July will be my two year anniversary. Over the past three months I’ve been down to 3 mg of the Envarsus and my tac level is still in the 5-6 range. Sodium bicarbonate was stopped – so now just on 5mg prednisone, Envarsus 3 mg, Plaquenil generic 200 mg and Mycophenolate Sodium 360 mg 2 pills twice per day.
Nephrologist came in said labs look great, asked how I felt etc. and then was just generally extremely positive, started saying I was fine eating anything, shrimp, crab cakes, etc.. but still recommends against oysters and mussels. There was even one point where he said my kidney would last my lifetime! (Lets not jinx, that but I’m hopping for a long run on this one.) Also asked him about alcohol because the transplant team was saying zero alcohol, he said a drink every so often was fine, sort of how I feel except its like three drinks at once twice per month… He went in to general health maintenance, dexa scan for bone density every two years, some colon lab test every year, anti rejection for ever, etc…
I asked if I should look into something like a measles vaccination booster since that’s in the news and he thought it was a live vaccine which is a big no-no for us but he would figure out if there is a booster or something (in three months I’ll email my question in advance to his PA can make sure its researched). But he did mention I should get the Tetanus and diphtheria vaccine every 7 years. Also suggested the shingles vaccine, but its so much in demand they will need to order it. I think I had wanted to ask about the Tuberculosis vaccine since that is something my dialysis center had to give me a booster for but I think I or we talked about Tetanus instead.
Anyway it was a very upbeat visit and that was nice. I think he was upbeat thinking back to last year prior to the Allosure test when he worried that I might be having some rejection inflammation.
From: http://ihatedialysis.com/forum/index.php?topic=34003.msg529565#msg529565
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March 21, 2019, 12:34:51 PM »
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One thing I’ve found on the forums is empathy for everyone that has a much harder time with dialysis/transplant/health/life. Sure I have a positive outlook, but I don’t know think I can be credited for that for that choice, maybe its DNA, nurture, nature, or choices I make, but really who knows why but I’ve been lucky. When I read of people having difficult times, I can only feel thankful because I don’t think some string of superior choices on my part resulted in me not having the same experiences, instead I have to believe that a lot of health and life are basically based on randomness that we can not control.
Obviously we do make choices and we all can make bad choices, but I think a lot of the ability to make the better choices more often than not are determined but are based on factors out of our control.
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March 22, 2019, 09:04:55 AM »
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Out of curiosity how long after the transplant were you able to stop dialysis ..
Immediately, my creatine was high when I become more conscious the second day but I was not having side effects that would require dialysis. A week later when I went home my creatine was high at 9.1. I have read of others that needed in the hospital post transplant.
It helped that I was still in transition to the strict dialysis diet and liquid restrictions. I never lost my ability to urinate so liquid overload was not an immediate risk, also I think I still had some residual function because beyond phosphorus binders I had not yet had to fully move to the dialysis diet. Prior to the transplant I could do Wednesday/Thursday back to back treatments and then come back in on Monday without side effects.
I had my normal Wednesday 3 pm dialysis and received the call early on Thursday and probably went to surgery at about 1 PM after arriving at the hospital at around 8 AM.