My dad died around the holidays from kidney failure. The day of the funeral we found out my brother had to go on a transplant list because he was born with only 1 kidney and no one knew. Now that one is failing and him needing dialysis is happening faster than we thought.
He keeps referring to a transplant as a temporary fix. It makes me sad like he has already resigned to dying from this too. The list where we are is very long. He has a coworker who got a kidney and started rejecting it after 2 years so I think that scares him as well.
If anyone could give advice, tips for finding a donor, and words of encouragement for me to pass on to him to give him hope, I would appreciate it.
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Elle1126
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So sorry to hear about your loss and family situation, hoping you guys find peace in this rough patch. I would tell your brother that first and foremost, all his feelings are valid, I was the same way thinking my life would be over because I was on dialysis and waiting for transplant. I found peace knowing that there's nothing I could have done different in my life that would have prevented this, so in a weird way, I'm more motivated in school and life to get after it. Transplant is a scary word at first but your hospital should do a good job in preparing the whole family on what to expect. They'll probably tell you if they haven't, but usually there's someone or a group of people called kidney champions who are the ones raising awareness for the need for a donor so that the person in need doesn't feel the pressure/awkwardness of asking someone else.
One story that has really inspired me was in one of my pre-op meetings my surgeon told my family that he himself was actually a transplant recipient - we were super surprised to say the least. He told me that he made it a point in his life to not let his illness define him, it's what he does with his life in spite of his illness that has defined him and that left a powerful impression on me for sure. Wishing you, your brother, and family all the best!
Thank you for your reply! It is awkward asking people to help and I haye feeling pushy but I've never heard of kidney champions. Is this something we could look up?
Ya, you for sure could probably find stuff online. In my case for example, I had a close friend, my sister and mom as my champions. One thing that might help is creating a facebook page "Kidney For ___" and asking people to take a look and share it. The page or post should have a lot of the info like story, why he needs a kidney, how to donate, etc. and I think it probably helped a lot with the awkwardness of asking people.
There is no denying that this is scary stuff. I got a living donor transplant Feb 2019. The whole process is intense, but my transplant center was fabulous. They think of the transplant as the best long term solution. Talk with them about that.
The scariest part was having to ask for a kidney. Once again, the transplant people were helpful. The living donor kidney works sooner, works better, last longer and usually requires lower levels of antirejection meds. Plus you get transplanted sooner while you are healthier.
So, I had to ask. This is a tough thing. It is very personal, and it is a big deal for the donor. However, donors do well, and they get a very thorough check up. If there is any doubt about how they will do on one kidney, they will say thank you but no.
I thought hard about where to ask. Many people do Facebook to cast a wide net, and the transplant center has stories about people donating to their auto mechanic and such. I ended up asking first at my church, because it is full of the kind of people that would do such a wonderful thing. My pastor ended up as my donor, and he was a match! I was better before I left the hospital. Meds and I are doing ok. He is fine.
Thank you for your reply! I think with Covid its hard now. No one voluntarily wants to go to the hospital. We are trying to ask at our churches as well. I've gotten a "celeb" to rt on Twitter but my Facebook audience is pretty limited.
Would you say you life had to change a lot after the transplant? Or was a lot of it normal
My life was better after the transplant. I was slowing down, physically and mentally, as my kidneys failed. I was back to work and full activities before coronavirus got in the way. The transplant folk recommend that I stay hunkered down for now. They have been good about keeping the virus away from the transplant ward, so they are open for business.
The kidney was the gift of a lifetime and a gift of life.
Not everyone after a transplant has rejection. They also do a lot of testing at first so if there is rejection it can be caught early and reversed.
I never had a rejection episode....I am living well 20+ years since my transplant in October 1999.
You can look at the NKF website and click on the BIG ASK. They have a lot of suggestions for asking for a living kidney donor. I asked everyone from my church, work, clubs, family, etc. I wound up with a deceased donor and it was a very good match.
My advice, don't believe all of the statistics that are out there. He needs to make up his mind that a transplant will give him a 2nd chance at LIFE. I was told that a deceased donor kidney would last 10-12 years and I would need another kidney. Here I am 20 years later with an awesome creatinine of 0.9.
Thank you so much for your reply. He has a silly question. After your transplant, were you ever allowed to eat red meat? Hes obviously cut down on his hamburgers but its something he wonders haha.
I'm also checking out that website! They seem to have a mentor program too for him.
Once you have a transplant your diet is no longer restricted. YES you can eat red meat, drink more water....I even have a glass of wine on the weekends. I still have to watch the sodium (salt) and try to eat heart healthy. You can travel and lead a normal life. Go out to eat, do what you want as long as you remember to take your medication every 12 hours, do labs as ordered and keep all doctor appointments and report any side effects or issues no matter how insignificant they seem, to your transplant coordinator.
Yes there is a Peer Mentor Program thru NKF. I am a part of that. The idea is for the Mentor to call you every week or so and talk, ask questions, etc.
I have been talking with a man in CA for over a year now. He has CKD and is about to start PD dialysis. Really great program and your brother would probably really benefit from it.
Sorry to hear of your loss. Transplants can last 20 years. That could be considered temporary but lots of living can happen in 20 years and then he could get another kidney if needed. I've only had my kidney for 8 weeks. My dad hot his first transplant at age 44. He did receive a second kidney. He is currently 72 years old and living a great life! He did have to do dialysis between his transplants. He is a very difficult match. But he did home hemodialysis with my mother helping. My father (and I! ) is very grateful for his life. He's got to see his kids and grandchildren grow up, worked, retired and is always busy!! You can live a great life with a transplant. I'm 53 and plan on going back to work full time plus OT in 3 weeks. I'll travel enjoy my time with my children, (27,25 & 16) and hopefully grandchildren at some point!!! I'm thankful for my new kidney! I'm available if you need to talk. 😊
It is a scary thing to go through. So I understand. Mine is a genetic disease. So I always knew it was a possibility. But I told myself I was going to be different. I was pretty upset when I has to get on the list. I was on the list for a year. I was able to stay off dialysis so that was great. But it did take time for my mind to accept that I really needed a kidney. Add that to the loss of your father and I can understand his feelings. Hugs to you and I hope over time he can see what a gift a kidney transplant is. ❤
Have him get on multiple lists. You can be on several even from other states. Also state medical lists are more likely to do more transplanted then your private hospitals as hospitals are rated by number of successes, so privates won’t do any transplants that might be slightly risky.
Also tell your brother that rejection can be prevented, take meds and be good to it. If you watch and know your body and numbers you’ll know if anything is wrong. Never be afraid to get an extra set of blood tests run if you think your numbers are bad. If numbers are bad call your care coordinator. They are wonderful and always there for you.
Good luck keep your chin up and go for it. Get on lists and ask friends if they will give you a kidney. A simple letter may surprise you. Ask and it shall be given. Knock.
Good luck. A kidney transplant is not temporary unless you mean 10 to 20 years and they are getting better every day. Really it’s worth it.
So sorry for your loss of your Dad. A transplant is a great thing. I am 49 and I have had mine for 30 years. Mine was from a deceased donor. My creatinine runs at .7. I have also been fortunate to be able to come off my antirejection meds too. Which i know is rarity. There are many options out there for your brother to consider. YES, after a transplant there are things you need tobe cautious of, but for the most part you can lead a very normal life. And you really need to live your life as if you are a healthy person. Watch your weight, diet, exercise and keep your mind on a good path. These are allthings most of us try to do even without kidney issues. Tell your brother not to be afraid to talk to a professional counselor too. That is half the battle. There are alot of things to think about and going into this with a clear mind and a solid decision on how you want to do things is important. He needs to know and be sure and have a positive outlook. I wish yall the best.
I've been transplanted for four years now and am doing great. My new kidney has always functioned beautifully. No issues with it at all. I wouldn't even know I had kidney disease except for the fact that I take medications every day to keep my new kidney safe. While a transplanted kidney from a living donor lasts on average 15 or so years, my doctors think it's very possible mine could last for the rest of my life. I'm now 53. And I have definitely met recipients who've had theirs for 30+ years and still going.
As for finding a living donor, that is a very awkward "ask" for many kidney patients. In reality, I think most kidney patients don't "ask" but rather make their need known and allow people to respond. For me, my church supported me by sharing about my need and also inserting flyers in the service bulletin that included information on my situation with links to the transplant center and contact info for my "kidney team". This was made up of 2-3 people who would be available to speak confidentially with anyone about kidney donation. They would answer basic questions and direct people to the transplant clinic. That way, people could explore donation without feeling the awkwardness of approaching me or my family. That helped a lot and the friends I had on the kidney team were really supportive. I never knew who spoke with them, but they said a number of people had questions and ultimately a few went on to get tested. Ultimately it was an extended family who donated and he said it was one of the best things he's ever done. We're both doing well four years post surgery.
Let your brother know there's a lot of support out there including this online community. Look up the local NKF office or see if there is a local kidney support group. Or call the NKF Cares helpline at 1-855-NKF -CARES for answers to more questions. Best wishes!
No tips, but in a way he is right - its a treatment not a cure. BUT that said its how you respond to the treatment by following doctors orders, taking medication as prescribed, following diet recommendations, establishing an exercise program and proper hydration. Its not easy, its a new normal but can be a full and engaging life. No one said life would be easy just look at the new normal we all are living in right now.
This is not a hollow echo of what most might say is just good sound advice, tell him this is coming from someone who tomorrow celebrates 39 years of living life large, with lupus, with a kidney I "borrowed" from my sister. I think she knows by now she is not getting it back - lol. I wish your brother the best and sorry about your dad.
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