My Son needs a Kidney Transplant I need advice selecting a Hospital
I’m in NYC, my Son needs a Kidney Transplant and I need to be tested to be a living donor. I’m not confident in the Hospital he’s dealing with or their outcomes & mortality rate afterwards. Is there an organization that I can get information on what are the best hospitals in New York to consider, unfortunately we do not have a Mayo Clinic near us. I also would like him to get a second opinion.
I would greatly appreciate the information.
Interested in more discussions like this? Go to the Transplants Support Group.
Hi @deedee69 Welcome to Mayo Clinic Connect!
Here is a link that can help you look at resources in New York State! It is from Renal Support Network [rsnhope.org]; https://www.rsnhope.org/rsn-programs/kidney-disease-resources/renal-resources-state/#1502381807003-ea35ede2-1e61
Are you able to share a bit more information about your son's situation? Is he currently on dialysis?
Ginger
I'm not an organization, but I am in my 3rd year post kidney transplant and doing well in NYC. I had it at the main Mt. Sinai and have nothing but good things to say about it so far.
@gingerw
Hi, thank you for responding so quickly, unfortunately my Son doesn’t like to talk about it. He’s in Kidney Failure since January 2025, he has CKD Stage 5. He hasn’t gone for a second opinion. He is not on dialysis. He has diabetes and high blood pressure. After he was diagnosed he began monitoring his glucose levels and blood pressure.
@m1rmiller
Thank you for sharing with me, was your Kidney Transplant with a living donor? My Son has already started the process and doesn’t want to change because he states he’ll have to start the process all over again. He didn’t get a second opinion or research the best hospitals for this. I feel it is important where we have it done, their experience and success rate not only for the surgery but life longevity afterwards. I haven’t met his team or gotten on the living donors list as yet because of this. He moved forward without sharing all his steps with me. I immediately offered to be his living donor but I didn’t think we were locked into doing it with them.
I would like to meet his team and speak with them before getting on the list. My Son told me you can only be on one. I understand it is a long process. He stayed with the hospital he went to when he got extremely ill and went to the emergency room not knowing what was wrong. Although his doctor was recommended by our primary care doctor, I still have concerns, it’s more with the hospital and past experiences there. Ultimately the Nephrologist is not the surgeon performing the transplant. I want to do this for him and my grandson, I pray I am a good match.
@deedee99My kidney came from a deceased donor. I was in ESRD for 10 years before I finally had to give in and get the transplant. Since I had registered as soon as I was diagnosed ESRD I had accrued 10 years of waiting time and they began offering me kidneys almost immediately. Since I still wasn't on dialysis I waited to get a really good kidney. I turned a few down but when they offered me a kidney from 32 year old woman who had dies of a stroke I took it and we did it the next morning. It is possible that your son may be able to go a long time without dialysis.
@m1rmiller Wow, I didn’t think we had much time to act. What are your thoughts with my researching and possibly switching to another Hospital and Team. I’m am going to meet with his Nephrologist later this month.
@deedee99 The first nephrologist I saw was planning to put a fistula in my arm and start dialysis immediately. I asked about peritoneal and he said "that doesn't work I never recommend it". I found a nephrologist at another hospital who was willing to work with me to try to avoid dialysis. If you are in the NYC area you have lots of choices. You want to be very comfortable with your nephrologist. It's quite possible that you will be seeing him for a long time.
@deedee99, hello! I work with the team at Mayo Clinic in Minnesota. I am happy to answer any questions you have about kidney transplant at Mayo or in general. You can also email me at transplant-rst@mayo.edu if that's more comfortable for you.
I'd like to clarify a few things for you. A patient can be on more than one kidney transplant wait list. As long as his insurance is open to covering multiple doctor visits, he can be listed for transplant in varying regions in the United States. He doesn't need to live near the transplant center, but I understand why it may be easier to be located close by. Most transplant center will accept testing done elsewhere so it's not usually considered "starting over", but he still may need to travel to the other center to meet their team and be examined.
Mayo Clinic has many options for kidney transplant including, pre-emptive kidney transplant (transplant prior to being on dialysis), living donor kidney transplant, paired exchange kidney transplant, deceased donor kidney transplant, and kidney transplant for patients with weight concerns. I am happy to discuss these options with you here or by email, or with your son as well.
Kidney transplant patients are typically followed by a nephrologist, but the patient should be meeting with a surgeon as well prior to the transplant.
I hope these details are helpful for you. I am happy to help further if you need more information. And thank you for considering living donation. It's so helpful to patients to have a donor identified. I hope you both find the right hospital for you. - Kristin