Any Transplant Surgeons here prepared to be honest?

[ValidPeacock]

Re my previous post re live kidney donation.

Just reviewing the very basic standard info again given to me as part of live donor work up.

I have had the assurances all will be well for me post donation, yet interestingly the risks post nephrectomy are stressed more so than in live donation, which is of course, a nephrectomy. I'm aware of course that a nephrectomy is relatively curative, as generally for kidney tumours/ injury etc, and that as a healthy donor risks are limited.

There is almost a flippant attitude l have found however that l need not worry as if I developed remaining kidney failure post donation l would be bumped up the transplant list! Of course l am all for reassurance but honesty is the best policy.

As l am obviously aware of how few donor kidneys are available for the number of patients waiting l don't actually find that terribly reassuring!

I do often hear that if I was one of the patients to develop kidney failure it could be well in a decade or two. Again, l don't think l should be written off simply because l may be in my 60's/ 70's by then!?

I have attempted research through trusted means but would really like someone actually in the know to be brutally honest, as l have some very difficult decisions coming up and l need to be armed with realistic facts. So far there is a slight air of positive PR for prospective donors, as l know live donors are really needed.

I always assumed that live donation would not be embarked upon/ encouraged if surgeons honestly felt it was of great detriment to the donor, and l really hope that is the case. Any realistic info would be very welcome!

I am not a transplant surgeon. I haven’t read your other thread. But what I do think is you are obviously getting severe cold feet, which is completely understandable. FWIW, my sister (as a liver recipient) might have needed a kidney (side effect of transplant drugs). I was extremely close to her, but wouldn’t have given her one of my kidneys, because I want them in store for my children.

It is completely okay not to donate. Honestly. And ignore all the posts who tell you that they’d do it in a heartbeat. They might. Or they might not. It’s irrelevant.

Not a transplant surgeon (although I do only have one kidney).You wouldn't be bumped up the list for a transplant due to your altruism. It's not like making a deposit into a bank account which you can withdraw later. It's based on where the kidney would be best used, medical need, lifestyle, age etc.

It's fine to have cold feet. Don't feel bad.

All I can say is that I've never been told I'd get any priority if my kidney failed, as a live donor in the UK.

I suppose I might get some priority because a single kidney would fail faster then two (and usually two fail at the same time). But the key information was always the calculation on the likelihood of my kidneys failing and the difference donating would make to that.

That is the information that tells you about prospective harm, and my consultant was very insistent on explaining it and working it out in front of me. It seemed like an extremely transparent part of the process to me. They gave me the numbers and sent them to me again later in writing. It can't be done before some testing is complete, though.

Thank you. I do appreciate it is a very personal decision. I just need realistic facts/ experiences as clearly l haven't had the reassurance that l really need. I've realised that transplant coordinators at various hospital transplant centres vary greatly in terms of information and communication!

Thank you for that, really useful info. X

Again, not a surgeon - but of course all surgical procedures, even simple ones can have significant risks up to and including an early exit.

I had a small procedure 2 weeks ago, and there on the consent form was the list of possible cock ups, but of course I was happy to sign as I needed the procedure.

In your case its different, you ARE healthy and don't need the procedure - by any measure, even if entirely successful your back up plan on the kidney front is gone - I admire your altruism, but I think you need to be 100% OK with the short AND long term risks.

They went through something like this with me:

https://shiny.biostat.umn.edu/Transplant/KidneyDonor/

This version is a bit clunky. You might need to look very hard for the little link to "risk models" here, and then you have to scroll down and pick ESRD for kidney failure. You may not have the values to hand but your centre must have measured them.

If you are worried you don’t have to do it - a few years ago I was pressured massively to be tested as a relative needed a donor I kept saying I wasn’t happy and had huge pressure so I told myself get tested probably won’t be a match then that’ll be it. But I was and I then had to say I hadn’t been happy anyway and my family didn’t talk to to me again as they blamed me totally.

I am not a surgeon or a medical expert, just a perspective, I had my kidney removed in 1997 with absolutely no issues, although I have a slight reduction in function on my last scan but not much, also you don't have to donate. Good luck with whatever you decide.

Thank you. I absolutely have not been shown anything like this so far!

My aunt did live donation to my uncle. You’re definitely not forgotten about or written off. She’s nearly 80 now and gets 3 monthly check ups to make sure everything is stable. Should anything change, they’re poised to act straight away.

I liked it because it is brutally honest - it shows you your current lifetime risk, and it acknowledges that that risk changes after donation. Of course it does. In my case they were two very low figures, so I was happy to go ahead. If they had been higher, I'd have thought twice.

(Obviously your centre must have some idea of your risk if they accepted you, and I thought they would always do these calculations themselves. But having the information and the power to decide your own boundaries seemed very important to me. I would certainly ask about this)

My husband is a recipient from a live donor. It has been 30 years and both are still healthy. The donor has no complications. The recipient deals with being on immunosuppressant medication and the side effects of that, but normally that is not a huge problem.

my husband tells me the surgery itself was more invasive for the donor and thus the first few days were rougher for him. The generally recovery was longer for the recipient.

Surgical techniques have changed radically in 30 years and we have heard are much less invasive.

Im our country living donors are given priority for a transplant if their remaining kidney fails.

You don’t have to do be a living donor. If you aren’t sure, you shouldn’t do it. It’s an amazing gift, but no one is obligated.

Thank you for sharing your experience. X

I am truly sorry you experienced that. X

You would have spoken to a coordinator who could have told your family that you weren't suitable without giving reasons.