So Close

[Jja1980]

How do you keep the faith? I've had to potential transplants cxl'd within the last 9 months. My wife agreed to donate her kidney so I could get one, but her final round of labs came back questionable. So, they called of my transplant with a week out... UGH I'll stay positive and hope for the best, but back to the waiting room i go.....

[Kbristow]

HI Jja1980. I'm sorry that happened to you. When I was on the wait list, I also had potential transplants fall through within a year. The first potential donor was approved but ultimately withdrew. The second also was approved, and we had even set a transplant date. She then asked to postpone a month to attend a major conference, and in those few weeks, something came up and she had to withdraw as well. I don't hold any ill will towards either as I know they both genuinely cared for me and felt awful that they could not follow through. I was grateful, but of course I was also very discouraged and found myself emotionally exhausted and anxious. Not only did two transplants fall through, I was also physically tired and weak and feeling sick. I began dialysis and decided to also begin to open up about my need. It was hard at first but my community and my faith helped me to hang onto the positive. As much as discouraging news would weigh on me, others would come walk alongside me. That was uplifting for me as I continued my tough journey.

I don't know what keeping the faith looks like for you. For me letting others in, continuing to give to others around me even in small ways, and counting my blessings for all the things that were going right, all helped me to stay out of my own head, especially when it was easy to spiral into depression. When people asked what they could do for me, I'd ask if they would join me on my dog walks. That made me exercise and stay connected. When people offered to bring me meal, I might accept, or at least ask if we could sit down to eat together. Practicing gratitude is a mental habit I try to do too. Even if I don't feel thankful, just giving thanks helps me stay positive and more able to tackle life.

Just know that you're not alone. This is a good forum to share your thoughts. So many people here are facing their mountain whatever that is that they understand your experience. Best wishes to you.

[Jja1980 in reply to Kbristow]

Thank you for sharing with me. Please excuse my typo's in my original post. I was a little emotional at the time. I'm a positive person, so I'm able to keep the faith. With everything going on right now (Covid). I was hoping to have a transplant before the world returned to normal.

[Hidden]

Howdy Jja1980...Sorry that you've have to go through that. Based on my own experience, I know finding the right fitting "living donor" can be quite a trial. I started the transplant journey about 11 months ago at the University of Illinois. Based on my health history (e.g. stage 1 cancer), I thought I would have to wait a minimum of three years for a transplant. Well, since I was already 2 years out — free from cancer — they started evaluating my wife as a living donor. All her labs came back normal except for her A1C. A high "pre-diabetic" A1C is a no-no for living donors we found out. That was the 1st setback. My wife's A1C was 6.4 in January 2020. They should have just rejected her as a living donor that day. Over the next seven months she worked hard — through diet and exercise — to gradually reduce her A1C. Those months, however, were extremely stressful. Julie would have a blood test every few months to see her progress. The transplant nurse coordinator "buzzkill," would usually squash our hopes after each test. Even when she got her A1c down to 5.4 (e.g. perfectly normal) — we were so happy — they made her take the glucose tolerance test. She failed the test the first three times she took it. 2nd, 3rd, and 4th setback. Really, we were losing hope after the second failed tolerance test. Finally, they made her see an endocrinologist (e.g. the head of the department). On that day the endocronologist said, "I would have approved you with a A1c of 6.4." Ironically, my wife also passed the tolerance test on that same day — her fourth attempt. Finally, some great news. About a month later, September 24th, I was part of a 4 person kidney swap, transplant. My wife donated to a mother. The mother's daughter donated to me. Cool!

I think the moral of the story is the transplant evaluation process — for both recipient and donor — can be a sure fire rollercoaster ride. It's really difficult to believe that 9 months after beginning the evaluation I have a new kidney. I would say, be persistent in your quest for a kidney. If my wife and I wouldn't have done so, I wouldn't be sitting here, at Christmas time, feeling physically well. Currently my hemoglobin is 14.3, creatinine is 1.15, and BUN of 19. Prior to the transplant I was on PD for five weeks with a hemoglobin of 10, creatinine 6.6, and BUN of around 60.

Similar to what djlew67 says, surround yourself with friends, good doctors and care givers. My wife and I were certainly not alone in this process. Our nurse coordinator (e.g. buzzkill) was also very, very good. Our transplant nephrologist (MD, Ph.D) is great pre and post transplant. I'm only fifty and for some reason I think God wanted me around

I will send good vibes your way with the wish that you will receive a kidney soon

[Jja1980 in reply to Hidden]

Thanks for sending good vibes. I'm going to stay positive and I know I will get a transplant when the time is right (God Willing). My wife has an appointment in a few days to have a 2nd round of labs looked at again. Fingers crossed everything works out.

I'm coming up on 2 years of being on the list, so hopefully I'll get a donor soon, if the swap doesn't workout. Right now, I worry that my stamina is not there and I'm so tired after a short walk. I don't want to go on dialysis, for fear my quality of life will be affected, but sooner or later I will have no choice.

I guess the biggest fear is the unknown. I was so close to finally getting a transplant and then it vanished like a thief in the night! Hopefully, I get a third shot at a transplant soon.

[Hidden in reply to Jja1980]

Howdy...Best wishes on your wife’s labs And, if you feel the effects of ESRD you may want to consider dialysis. I held out as long as I could before going on PD. But I knew I was at that point when I was having trouble with simple walks around the park. My BUN was nearly 100 — it had jumped from 60s to that high in a matter of months. My wife reminded me of this fact, just like a transplant, dialysis is life saving tech. Had the catheter placed, went to training, and started PD on August 19th 2020. I felt a whole lot better within 2 weeks. 2 weeks after that I had the transplant. Again, when I had the catheter placement a transplant didn’t look possible.

Best,

Christopher

[Crocheting-Cricket]

Don't lose hope! It is a long process and the medical community wants to make sure EVERYTHING is as perfect as possible. My brother and I waited 2 years - and we already had each other in mind! Just keep your head in the picture and remind staff, question them if you haven't heard back in a while, and keep on top of it. That's how we managed. Last April, after ANOTHER long list of tests, when we thought "This is it!", the surgeon said "Let's revisit this in another couple of months..." I was NOT happy! I wrote to the Review Board and said my brother and I were the healthiest we've ever been, totally quarantined, and waiting another few months wouldn't guarantee that things would be better! My letter made a difference because we were scheduled for June 30th. Sometimes the squeaky wheel DOES get the oil! Hang in there!