Kidney Transplant Process

[Meagain24]

Firstly, we will ask the hospital next week but wanted to ask here instead of worrying all weekend incase anyone has any useful insight.

My partner has recently been to the clinic to be assessed for suitability for a transplant. He was told on the day he is suitable and at this point had already had several tests, for example heart tests, chest X-rays etc.

On the follow up letter received today the front document summarising everything says he is suitable & there are no issues for listing once his EGFR hits a certain point. However on the final page that notes what was discussed in clinic it says ‘I explained the issues identified which need addressing before transplantation’. As already mentioned the rest of the document indicates all tests are fine and of no concern and that there is no issue with listing. My partner says nothing was mentioned on the day just that he was suitable. Do you think this is just a generic comment incase there are any issues? Or perhaps everyone has to have issues addressed before- I.e you would need tests before to check for any new infections etc.

Just to note he doesn’t smoke or drink and is really active.

Seems odd to me, I would ask the hospital to clarify what is meant. I’ve been in process since February but there is a query over my heart tests so I’m waiting on a cardiology referral now before they can confirm if I’m suitable for a transplant, so not had a similar letter yet.

Sorry I don't know re transplants, but I had a stroke last year & the letters I've had since often say things like this or do not reflect the actual conversation, it's very frustrating.

A family member had a kidney transplant. On the day that a kidney was available, everyone who is a suitable match is brought in. The hospital then carry out a range of tests on the patients and the person on the day who is healthiest gets the kidney. Could it be referring to that process?

I bet it's just a stock phrase they include in all their letters to mean that they have thought about all the things that need thinking about (which could be nothing very much or could be a whole bunch of things). I wouldn't read too much into it (fwiw, am a doctor, but nothing to do with renal transplants).

@Somanythoughts this is what I am thinking. Like I said all the other parts of the document say no concerns & no follow up or referrals required. Surely if there was something serious it would be addressed now, and follow ups and referrals would be happening. Thanks for your response!

@Greybeardy thanks so much for your response. It’s actually a copy of the letter that’s being sent to the gp. The summary page at the starts says all is fine, no follow ups or referrals needed & patient can be activated when the time comes. Assume the front summary to a gp would outline any major concerns?

@Ihad2Strokes seems they just add generic comments afterwards to cover themselves

I think this is right - it will probably be issues that can't be discussed in detail until they have the actual kidney and the actual potential recipients. Presumably once a kidney is donated (assuming not a donation from a close friend but a general donation) they have to assess a complicated cross over of which person on their waiting list is best matched to the kidney and also who is most sick. It won't just be a case of "you're 4th on the list so once 3 other kidneys have come up, you'll get the 4th one". It will change depending on how sick everyone is, who is the best match for the donor kidney, who might have an awful virus on the day etc. It will probably be these issues.

Also when my family member got the call, there were 2 kidneys and there was only 2 people that matched so the testing process wasn't as horrific as it might have been if there had been say 8 people called. I don't know how common it is to have so few people called but maybe it happens more often than you might think.

I think it was a stock phrase - I’m a surgeon and also use templates for standard letters with individual details added in .

@olympicsrock thank you for your help. I assume the letter would outline any issues that need resolving before even if they were minor?

I would think so @Meagain24. As I said, I’m in the testing process atm (have been since February). It is taking a while to resolve some queries over some of the results so I don’t think he would have had that letter if there was anything that might prevent him having the transplant.

I had a kidney transplant in 2021 and it may just refer to other things that need to be tested for.

One thing I would say is that once you are on the list, circumstances can mean you drop on and off the list e.g any illness or infection. The day they called to say I was on the list I was immediately taken off it because I’d just tested positive for mrsa!

It’s a rollercoaster so do be prepared for that.

My 22 year old son is on dialysis awaiting a kidney transplant. He had a similar letter to your DP, except it specified that he needed the chicken pox vaccinations before he went live on the transplant list. (He'd had chicken pox as a toddler, but a mild case so he didn't have the antibodies). As others have said, I think it's a standard phrase and they specify when any action is required. Best of luck to your DP. My son began dialysis once his eGFR reached 6, which is lower than many people but he generally felt well up until that point.

@FuzzyGalgo this is really helpful! I was saying to my partner last it was also saying he didn’t have antibodies for the chickenpox virus - so could to know they would just give the vaccine. Perhaps it just ‘issues’ like this that need resolving.
How is your son finding dialysis? Which one does he do? My partner is only 35 and also worrying about how he will cope with dialysis.

I didn’t know they did this. My family member had a transplant a few months ago after being on dialysis and when she got the call to go to hospital there’d was never any talk of other people waiting at the hospital, they did tests on the kidney but it was ‘her’ kidney. It was amazing she got a match as it was her third transplant.

My son's having haemodialysis in hospital at the moment. It had to be done as an emergency in his case because blood tests showed he had dangerous levels of urea and other toxins in his blood. They put a line in his neck / shoulder because they didn't have time to create a fistula in his arm. He's managing with the dialysis ok, although it's very time consuming. In addition to the four hours he spends hooked up to the machine, he's got the travel time to and from hospital, plus the four hours only starts once they connect him and that's not always quick! Physically he hasn't had too many issues with dialysis, although after the sessions his blood pressure has tended to shoot up and in that case the nurses won't let him leave until it's stabilised. All of that means four hours can be more like six or seven. He chose to do evening dialysis (7-11) to reduce the impact on his ability to work and do his hobbies. Sometimes he doesn't get home until 1am and it's tough to get up early the next day.

He's just been approved for peritoneal dialysis, which he can do at home. It's gentler on the body because it doesn't involve removing his blood, cleaning it and then putting it back. He's having surgery to put the tube in his abdomen at the end of this month. It needs a bit of time to heal, during which time he'll be trained to use the dialysis machine. The plan is for him to dialyse overnight while he's asleep. It'll be every night as opposed to three nights a week in hospital, but the benefit is he can do it at home.

Emotionally it has been difficult for him at times. He's had to adjust to living with a life threatening illness and all the treatment / time spent in hospital. It's had an impact on his ability to work, socialise and do his hobbies and I think his sense of self has been affected too. Having said that, he's found reserves of strength that he didn't know he had and he's had lots of support from his family and friends, which has helped.

I really hope things go well for your DP xx