Possible Second Transplant - Support/Advice Welcome

[acadia_ll]

Hi everyone! I am currently a transplant patient (got a living donor kidney at 16) and have had my kidney for almost 7 years, despite having an episode of rejection after year 2. My creatinine took a hit after that rejection and stayed around 2.5. Recently however, my creatinine has started to increase to 3.3 and my GFR is down to 19. My nephrologist recommended a revisit the transplant team at my hospital to be re-evaluated for a second transplant. Obviously, this has brought about a lot of emotions and anxieties. I am wondering if anyone has had a second transplant and if so, how was that experience? I am thinking about being on the list this time. Was the process similar to the first time? Were there any differences? How was the evaluation process? Lots of questions, but I would love any and all advice.

Thank you all so much!

[Dara3351]

There have been so many advances in medicine and surgeries. I found out I had CKD stage 4 (GFR 17) at 66 in Feb 2017. I immediately went on a plant based diet, got a dietician and listened intensely to my nephrologist. I was introduced to the transplant team and went through a battery of tests. Mammogram, colonoscopy, Pap smear, EKG, nuclear stress test, chest X-ray, blood and urine tests, cancer screening,echocardiogram, dental exam, blood, tissue and crossmatching tests. Spoke with the transplant team which included the Doctor who would do the transplant surgery, social worker, financial specialist and possible others. I had seen an article in the paper how people with Hepatitis C could donate because it could be cured. Within 2 weeks I got the call. I was never on dialysis and thankful for that. By the time I had my transplant my GFR was 12 and my creatinine was 3.75. I did a 12 week treatment of Mavyret and no longer show signs of Hepatitis C. I am now 11 1/2 months post transplant. My GFR is 89 and my creatinine in .6. Stay positive is all I can say. The tests are time consuming yes but they are tests needed to get you the transplant. Hoping you can last until you get your second transplant. All of us wish you the best!

[Herkidney]

Hi there! I received my kidney transplant (first) 16 months ago, so I have not been through a second transplant. However, I wanted to let you know that I have a neighbor who has had 3 transplants (he is now in his 60s and his first one was when he was 20 - his first 2 were deceased donors and his 3rd was a living donor) and he is doing great. Right before I received my transplant, I met a lady who had just received her 4th transplant at my transplant center. I have also met a few people who have had 2 transplants. The reason I wanted to share this with you is that other people have gone through multiple transplants - although it is scary, it is not an impossibility. Please don’t be discouraged, keep your thoughts positive and focus on being as healthy as possible so that you are surgically fit for a second transplant. Best wishes!!

[Dna4christ]

Hello there.

I received two transplants: first day from my dad @ 5 and second transplant from a friend @ 25.

My first kidney lasted for 11 years then I was put on peritoneal and later hemodialysis. Total, I was on dialysis for almost 7 years. During dialysis, I was on the transplant list as well as had 11 donors tested for a match. Because of my previous transplant, my antibodies were high, and it was difficult to find a donor. The nurses and doctor wanted to put me on this IV treatment to lower my antibodies but I refused that treatment and decided to wait. I had 11% chance of a successful match. Thankfully, God provided me a perfect kidney (doctors said it was a better match than a twin sister) from a dear church friend. She and I went through various tests-- ekgs, treadmill test, urine retention tests, lots of labs for a crossmatch, psychological test, counseling..- When all the tests came out negative, they set us a date for the transplant. All this took 3 months for us. We went in for surgery, drugged us before we went with valium to make us "happy". I woke up crying because I was incredibly happy and grateful. Started making urine as soon as they put in a new kidney as I couldn't make any before. My creatine had gone up to 21. I almost died from misdiagnosis at another unit. After surgery, my creatinine went down to .8! I started eating everything after three days. My donor friend was doing great. Of course, I was put on alot of immunosuppresants- the usual. Same as my first transplant. Prednisone, tacrolimus for me, bactrim etc. I had to monitor my blood sugar for about 3months due to possible post transplant diabetes from tacrolimus. Therefore, I had to be on low-carb diet. It turned out fine. I experienced little side effects such as bloating and insomnia (high dose of prednisone which weaned off to 5mg). My blood pressure was doing so well that I never took meds for my 2nd transplant unlike my first. I had to get labs 3x a week for the first month.

My kidney is doing well and steady after 8 years. My creatinine isnt perfect as before, but it stopped at 1.5. If you have any other questions, feel free to message me. I hope you find a match soon!!! Best wishes~~

Sorry for the long message..