Finding potential donors

[SKM23435]

I attended my local nephrology clinic this week. My eGFR is now 18. We discussed my options including dialysis and transplantation.
I had no problem discussing dialysis. Not that I want to go there but it's my problem and I guess I just have to get on with it. I was ok discussing cadaver transplantation, but I felt uncomfortable with the concept of living donation from family and friends. I understand the facts and the fact that 5 year transplant survival is better from living donors, emotionally I just wasn't quite there (maybe it'll change when I start to feel ill??). I just wondered how others feel about it, how you cope and how you set about finding a donor.

[MatthewC]

I don't know how my receipient brother actually felt at the time about asking, but what he did was to get his wife to send out an e-mail stating the situation that he had reached. This was only sent to the close family of the same generation (we are a large family!) and it generated 5 responses. Being sent by his wife rather than him, the e-mail immediately made the question one for us (the family), and the recipient was not involved at all; it was left to us to sort out the pecking order for testing (I won!). An e-mail might sound impersonal but at least everyone knew about the need at the same time - you wouldn't want to be in a position where, too late, someone says "I would have volunteered if I'd known".

As for being "uncomfortable with the concept of living donation from family and friends", just don't feel that way as I doubt that they would want to be excluded. My family all wanted to be involved in some way and in fact the transplant week became one of those memorable family events like my parents 50th, 60th and 70th(!) wedding anniversaries.

Finally, don't worry about the potential donor - you cannot predict their sentiments and reasoning, no matter how well you know someone. If someone volunteers, accept their offer with gratitude. Believe me, they are unlikely to be making a freewill offer if they didn't want to.

Matthew

[rheaybou]

I was very lucky to get a living donor kidney from my cousin 18th feb this year. My first offer of a kidney came from my younger brother via text message about 30 seconds after I had called him from hospital after being admitted with sudden renal failure, I had no idea you could even do this at the time.

As I started dialysis straight away I also joined the transplant list and was happy to take my chances, at the meeting living donation was raised as an option but no pressure was ever put on me to search/ask family and friends. I dont think I had to ask one person, everyone offered because they wanted to help

It takes someone special to offer this sort of gift so I would never have asked people, however you may want to mention that a living donor transplant is an option when talking to family/friends as most people dont know about this route. But beware, once you start this journey its one hell of an emotional rollercoaster for everyone involved. My donor said its the best thing he has done apart from become a dad and feels blessed he could help. This is why he is known as "The Legend"

[cazpi]

I also had this problem, coming from a very small, and not very close knit family. I finally plucked up the courage to ask one family member (feeling very guilty, as we're not close at all) and after a long think about it, he said yes (I'm still pre-transplant) at this stage. Since then my father has also come forward, but he is considered too old at 75. I got a resounding "no" from my partner, who was the only other person I mentioned it to.

[MatthewC]

Since then my father has also come forward, but he is considered too old at 75.

I don't believe that there is any specific age limit in the UK for donation - it is entirely based upon how fit the donor is, as they do not want to adversely affect the donor's life post transplant. I am told that they have had donors aged above 80 - but that does sound a bit extreme.

A friend of mine told me today about his father (80+), dying of cancer a few years ago. The father (part jokingly) asked the doctor if there was any part of him that could be used for transplant after he died; the doctor looked him up and down and said "your glasses!"

[MandyV]

There is no age limit for organ donation but kidney function does tend to decrease with age and so unless the donor/recipient are close in age or (in the case of cadaveric donation) there is the possibility of transplanting both kidneys or there are any other extenuating circumstances they may not be keen to use a 75 yo donor, plus of course it is a major operation with greater risk for an older person.

[MandyV]

Sorry - should have clarified that older donors are essential on the cadaver if list. Last year more than 30% were over 60, 10% were over 70!

[cazpi]

Sould have said "older than ideal" rather than "too old". I'm sure they would have considered taking my father's kidney if it was the only one on offer, but they obviously preferred the younger version!

[MatthewC]

Table 5.16 at the bottom of this link http://www.organdonation.nhs.uk/statist ... tivity.pdf shows the demographic data of living donors (and their recipients) in 2012 in the UK. Two percent of living donors were over 70, and 16% were aged 60-69. Table 5.15 shows the same data for deceased donors with the corresponding figures of 11% and 22% (which I guess is where Mandy got her figures from).

Technically I guess I'm probably "older than ideal" - I always felt that people who said how fit I was were actually thinking "You are very fit for your age" but never said it!

[Tibbs]

As you say, my dad was told that it's not chronological age they worry about, it's biological age. My dad was 64 when he donated, and they said that the condition on the kidney was fantastic for anyone, let alone someone his age!

[AmandaClare]

@MatthewC: my father had damage to most major organs when he died, and also cancer. Nevertheless we asked about donation and got a nice letter later saying they'd been able to take his corneas for transplant or research.

[saday]

My sister offered to donate as soon as I was told that failure would be sooner rather than later. I gave her the transplant coordinators name and number (as my doc asked me to get her to call) and basically said thankyou and that was all I could do.

That was October last year. My gfr is down to 17 now (it was 20ish then) and when it was mentioned recently, by our mum her reply was 'I haven't had the time to make the call' .
My way of thinking is that if she ain't got the time to make a phone call, she ain't gonna be able to give up what? Three months or so?

I have no issue with this at all as I understand that the reality of the situation is scary, she has young children too. What I am having difficulty with is approaching her to say 'it's ok, it's great that you thought about it and I appreciate it' .

And then how do I the the message out that she's no longer an option for me? I don't want to upset her as I know her offer was genuine at the time, but I do want others to know that its a fast approaching reality for me.

Any advice from someone who's been there done that would be greatly appreciated!!

[jbell]

I have been in a similar position. When 2 years ago I had a sudden drop in my eGFR my sister-in-law said she would like to be tested and would donate if it were possible. I gave her the leaflets, numbers etc but she has never done anything about it, luckilt my eGFR went up but it is now down again and now I have to go on transplant list. We have never mentioned it again but like you I think the reality hit home and understandably she doesnt want to do it. I do not mind and we still chat away like nothing happened, that seems to work for us.

On the other hand my husband volunteered and had all the tests done 2 years ago but again wasnt needed, but he was a match for me. But now he has changed his mind and we have discussed it and I made it very clear I do not mind at all about his decision and I understand. But it was quite hard to tell my consultant who thought my husband was waiting in the wings so to say. Also telling other people was difficult, but I just say its not happening and give no details away, they can surmise what they want from that but really most people are not nosey enough to prod me for information. I think everyone would understand, its such a hard decision to make.

[cassie]

I understand the position you are in about feeling uncomfortable asking for a living donor. My Mother offered without any hesitation, however she had a heart attack which meant she was no longer a suitable candidate for living donation. This was really difficult news for me to take in, however my transplant consultant suggested that I get desperate and ask around. I think asking someone if they have ever considered being a living kidney donor is not something I feel comfortable doing. You're more or less pushing them into a corner to make a decision and if they say no, they may feel guilty etc.

I decided to use the wonders of the internet and I made a Facebook group and explained my situation and said that if anyone would ever consider being a living kidney donor then to get in contact with me. The response from this was absolutely fantastic. Over 30 people came forward in the end and I referred all of them on to my transplant co-ordinator.

I'm still awaiting the results of their testing but hopefully out of the 30 people offering, there will be a match somewhere in there for me.

[jbell]

That was a very clever idea Cassie and I hope in that lot you find a match. It just shows you there are people willing to donate out there its just finding them