Second kidney transplant

[DoylerOz]

Hi,

My nephrologist is putting in the application for me to go back onto the transplant list. I am very lucky as I have had my first transplant for over 28 years. My GFR is running at 12.

Something I wondered about is do they remove my previous transplant and put the new one in the same place? I was hoping someone here could answer this for me.

Another thing is using a living donor. All my siblings want to be tested but I don’t want to put them through an operation and would worry in case anything happened them. Can they be tested but only be used if it got to a critical stage and I wasn’t coping with dialysis?

Thanks a million

Xx

[Winner76]

Hi, I understand your worry of letting a sibling donate a kidney . It’s very rare it goes wrong , it happened to me and my sister in 2016 the kidney lasted 3 days because of a blood clot and was removed. Our relationship was not damaged by this it was just very sad . During assessment donors see counsellors and are told about all the risks so it’s really up to them if they want to go ahead. It took 2 years for my sister to go through all the testing etc. My sister recovered very well and living a full life with just one kidney.

They usually put the new kidney on the opposite side and in some cases I’ve heard the old kidney decreases in size but that could differ in different cases.

You have to ask yourself would you genuinely be be happy to give your sibling a kidney if it was the other way around? This is how your siblings feel. You’re very lucky and loved that they all want to do it. You will make the right choice .

Best wishes

Tina

[LavenderRabbit in reply to Winner76]

That was a very beautiful and caring response.

[DoylerOz in reply to Winner76]

Thank you so much. That is exactly what they have said to me. And I would without question give them my kidney. I just worry dreadfully about them. I am the eldest. I suppose it is my job. I am 52 and we just lost our Mum a couple of months ago and our Dad 10 years ago. My youngest brother is only 37. So I want them all to be safe and healthy xxx

[Winner76 in reply to DoylerOz]

Yes I totally get it . I have 10 siblings I’m in the middle somewhere. I’m 47 , I didn’t allow my younger sisters to get assessed they were still having their babies. So I do understand, but they might not let you say no. 😂 I lost my Mam a month after my successful transplant in 2020 but I know she was so happy I got a kidney.

[MToQ]

Yes, you can. Your team can't force you to have a transplant even if it is a perfect live match. Only YOU and your live donor can make that decision. Perhaps just stay on the list and see if you get lucky. Some people get calls amazingly fast.

IF you aren't handling dialysis well and like you mentioned, end up critical, then make the call whether or not to let them go thru with the donation. The testing process takes a really long time so let them start, just so you know if that is really an option or not.

It's amazing that ALL your siblings want to be tested. Trust me that doesn't happen for everyone. No one in my immediate or extended family even offered to get tested. Many didn't/still don't even have the pink dot on their licenses. I had 2 friends who generously tested but weren't matches. My kidney came from a wonderful young donor (in her early 20's) that passed away from the flu.

I was on PD dialysis for nearly 5 years before I got the call. I had 0% function left and had a PRA of 100% (started at 98%.) I was told that my wait would be at least 9+ yrs (2nd hospital told me 15+yrs) since I was a really hard match. Fortunately, due to my dire circumstances and some recent changes to UNOS allotment process, I managed to somehow get to the top of the list in 5 yrs.

I also had some reservations about accepting a kidney from a live donor. But I kept those reservations to myself and figured I would wait to cross that bridge when, and if, it became a real option.

You might change your mind by the time they all finish getting tested. Or you may not. Talk it thru with your siblings and maybe with a therapist together. So either way, your siblings might learn your valid reasons or you will learn their earnest ones. Either way, they will know how much you love them and you will know how much they love you.

Warmly.

[DoylerOz in reply to MToQ]

I am crying now. I do feel very lucky and loved. I am so happy you got yours. I got my existing one similarly to you, from a deceased donor. They are all coming down to see me in a few weeks and I will have the conversation with them. Thank you xxx

[wind00]

I've just received my second kidney transplant 6 weeks ago. My sister gave me my first kidney which lasted 24 years and my wife my second. It's working brilliantly and I've just come home from a 3 mile hike. The second transplant experience is different but can be as good as the first.

To answer your question about organ placement, both transplant centers I consulted insisted on leaving the first transplant in place and putting the second in same spot on the opposite side. Everything seems similar to the first surgery but I do feel like I have a little more pain around the surgical site than I did, but I was 32 years old at the time of my first.

One thing I've learned in this process is that a second transplant is a bit more difficult than the first and a living donor is substantially better if available. The matching process can be complicated by antibody differences that you and a potential donor have. I was lucky to have a very low PRA number but know people who do not who have struggled. Additionally there is a significantly higher risk of rejection and also infection with BK virus and CMV after a second transplant. With the fact that outcomes are better with a living donor than deceased and you want to be as healthy and strong as possible when you have your second transplant, I would encourage you to ask your family members to consider donating. Remember that family members are much more likely to be close genetic matches which can help avoid rejection (I never had any type of rejection with my sister's kidney). It's an amazing experience, not just for the recipient but also for the donor. My sister recently told me that giving me a kidney was one of the most powerful, life affirming things that she ever did. She is perfectly healthy 25 years later as is my wife. They were both in the hospital for 2 days and back to work in 2 weeks. If one of your family members or friends is willing to get tested, let them do it and be a hero for you and themselves!