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Liver transplant - Let's support each other
Transplants | Last Active: 13 hours ago | Replies (1623)Comment receiving replies
I am a 17 year liver transplant survivor. I was very blessed. My transplant was much easier then getting to the transplant. Very ill prior to transplant. Had been sick for 4 years prior to my transplant. No pain, but had high ammonia levels and went into short term comas many times before transplant. After transplant, was very weak. I really never got my strength back. However, I had no rejection problems. Have been able to be here for my 2 grandchildren and 4 great grandchildren, what a blessing. This last couple of years have been a bit tough. I have worked full time for the last 16 years. I developed Afib, ended up having an ablation, which went good. Was put on blood thinner (Eliquis, had a GI bleed. Lost 40 lbs over about a year and have hyperthyroidism. Started thyroid meds, which has shaken up my afib. Finally after 16 years on prograf, finally went to kidney doctor and found out I have 50% kidney function. I am now 63 years, I was blessed with many good years. With age I think you just start having more medical problems. I am hoping that I start gaining weight ( I weigh 88lbs now. But looking forward to improving with new meds. Just get a very good set of doctors, Gastro, kidney and Heart doctors to keep an eye on you. Don’t just trust a family doctor or an internist. Mine didn’t even want to refer me to a kidney doctor. Said nothing looked that bad and he probably wouldn’t take me. He told me I should have came a few years earlier.
Replies to "I am a 17 year liver transplant survivor. I was very blessed. My transplant was much..."
Hi @slslape56 I too welcome you to Connect. I am 3 years post-transplant (September 2016). Things have been great for me ever since also.
Age does definitely bring on many medical problems. I am now 72 and it seems as if multiple things are popping up. I agree, it's essential to have good doctors. I had my transplant at Mass General in Boston and I rely on them for virtually everything except my PCP due to distance -- I am about 55 miles from Boston and during the day it can take two hours to get there. I have lab work done every other month and when my creatinine was high my transplant doctor changed my immunosuppressant and told me to drink a lot of water, or other fluid -- 60 - 80 ounces a day. Originally they said 80 - 100 ounces but it's been so stable now for so long that I can cut back a bit. To what is the doctor attributing your decline in kidney function?
JK
I am close to four months post transplant now and my major concern is my kidneys and blood pressure. I regularly see a kidney doctor as part of my liver transplant team, but all blood test results continuously show that my kidneys are under stress. I am looking into a consultation with a nutritionist to help with a more kidney friendly diet. Our main problem is the anti rejection meds that are toxic to our kidneys. Are you seeing doctors in a transplant hospital? I wish you the best in finding a good resolution to your current problems.
Connect
@slslape56, Welcome to Connect. I am approaching my 11th year with my liver and kidney transplant, and I thank you for sharing your experience. I think you might be 'just what the doctor ordered" for me because I am approching another birthday, soon (71). I also am blessed with many wonderful years and sometimes wonder how much my body will change with advancing age.
I completely agree that 'good' doctors are necessary when it is about our transplanted organs and our health. I am sad that your family doctor did not want to send you to a nephrologist. I am curious about your kidney. At 50% function, what is the nephrologist telling you about it? What can you do to keep the level from declining?