Non-directed Altruistic Donation

Burnsy2023 · 11 Nov 2014 at 22:07

I found out about “Non-directed Altruistic Donation” a few years ago when my then girlfriend talked about wanting to donate a kidney to someone she doesn’t know and may never meet or even know how the transplant went. At the time I reacted the same way most people do: with concern. When someone you love says that they are going to risk their life for a total stranger (albeit a relatively low risk) it’s a scary prospect. She ended up going through various tests and medical assessments but ultimately her family and I talked her out of donating. That relationship has since ended, but I always admired that she was willing to go through all of that and admittedly a bit guilty for talking her out of giving such an amazing gift.

Since then, I have thought about doing it myself on a few occasions. I have a philosophy (perhaps that’s a bit of a grand statement) that I want to be the best person I can. Some people don’t like to change, but I know I have flaws and if I can be that little bit more considerate, a little less selfish then I’ll be a better person at the end of it. At the end of the day, for me, that’s the virtue that I’m always aiming for. I’ll always be flawed but we are judged on our actions not our intentions and this seems like a good way to do something amazing.

So with this in mind, I made a decision today to get off my arse and enquire about getting assessed to see if I’m eligible to donate. I don’t expect it to be a quick process but I think it’ll be worth the effort. There are lots of people who desperately need a kidney transplant to regain their lives. If you donate a kidney you can still lead a normal, healthy, active life. Most people think that if you donate a kidney you have lost your ‘backup’ but the reality is that if you get a kidney condition it’ll often take out both of them regardless.

So i'll update this thread when I go through all the assessments etc to document my journey.

benjii · 11 Nov 2014 at 22:09

I don't really know much about this process, so I shall watch this thread with great interest. I commend you for having the courage to make a difference in someone's life.

Burnsy2023 · 11 Nov 2014 at 22:12

benjii said:
I don't really know much about this process, so I shall watch this thread with great interest. I commend you for having the courage to make a difference in someone's life.

There's loads of info on the NHSBT webite: http://www.organdonation.nhs.uk/how_to_become_a_donor/living_donation/living_kidney_donation/

Moley · 11 Nov 2014 at 22:13

I would absolutely NEVER do this. Imagine if you gave your kidney away and then a few years later one of your nearest and dearest had kidney failure and you were unable to give them one of yours...

Caged · 11 Nov 2014 at 22:25

Moley said:
I would absolutely NEVER do this. Imagine if you gave your kidney away and then a few years later one of your nearest and dearest had kidney failure and you were unable to give them one of yours...

Taking that attitude to extremes though you'd never do anything because the result of doing it might be bad.

Danthus · 11 Nov 2014 at 22:30

I assume you have two kidneys for a reason, giving one away doesn't seem like a really great idea to me in this context.

Xordium · 11 Nov 2014 at 22:33

Burnsy2023 said:
There are lots of people who desperately need a kidney transplant to regain their lives.

There are indeed you are correct but a lot of the people that really need kidneys are denied them due to lack of donation from their particular ethnic group. I am guessing you are not in one of those ethnic groups that are under-represented for donation but over-represented for need. An awful lot of those people have inflicted this onerous condition on themselves too. You need to face the fact you may be doing the equivalent of giving George Best a liver transplant.

Burnsy2023 said:
If you donate a kidney you can still lead a normal, healthy, active life.

You may still live a normal, healthy and active life. You may also suffer complications. Those complications could take your normal, healthy and active life and turn it upside down for you and those that love you.

Burnsy2023 said:
Most people think that if you donate a kidney you have lost your ‘backup’ but the reality is that if you get a kidney condition it’ll often take out both of them regardless.

Burnsy this is not totally true. The way kidneys get damaged means that one will get hit worse than the other they don't get hit equally. That lesser damaged kidney buys you extra time before having to go onto renal replacement therapy. The hit to the glomerular filtration rate is not applied equally, it is not a binary function like they work or they don't - there is a degree of working (GFR%) and if damage 75% function in one and 40% in another is preferable to one kidney taking the full whack.

You seem like a really great bloke Burnsy I hope you really think about this because I don't personally think you've thought this through at all. Yes, these people are often going through living hell but you may put yourself in that position. The donor often fairs worse from the surgery than the recipient. Complications are far from 'rare'. The kidney could go to an adolescent who won't manage it but it is rushed in before their 18th birthday - this is actually quite likely.

I am not saying this to be a **** but I presided over so many renal transplants in my life I can honestly say I have lost count. I've also presided over the subsequent nephrectomies a year or two later. I've seen bins with tacrolimus levels higher than the recipients blood - yes they chuck their meds. And I've seen people who have had a lifestyle that has placed them into end-stage renal failure something they could have prevented. And I've seen plenty of donors who are not living healthy happy lives.

I've also seen people look after their kidneys for year after year, people who were unfortunate in the lottery of the genepool or some quirk of fate and have now been given a second chance. I've seen people donate and walk away consequence free (well not walk for a good week!), etc.

I just want you to really think about because some of the stuff you are putting there sets off alarm bells in me and you will not be given impartial advice from the people doing the assessment. I am not saying don't do it (well I am to some extent) but think and that is coming from someone who knows the renal transplant system very very very well.

adam98150 · 11 Nov 2014 at 22:41

Moley said:
I would absolutely NEVER do this. Imagine if you gave your kidney away and then a few years later one of your nearest and dearest had kidney failure and you were unable to give them one of yours...

Wow, all I thought was .. what if my one kidney fails? I'd be stuck in hospital until a donor was found.

dannyjo22 · 11 Nov 2014 at 22:51

Burnsy2023 said:
Most people think that if you donate a kidney you have lost your ‘backup’ but the reality is that if you get a kidney condition it’ll often take out both of them regardless. .

You are about to donate one of your kidneys, a ****ing huge decision and step so I guess you can back that up statistics wise. Tell me the stat for how often a kidney condition takes out both. If you don't know that's one hell of a step without knowing the actual facts.

Tefal · 11 Nov 2014 at 23:09

Don't do it put yourself down as an organ donor when you die but don't give away a kidney especially don't think you just give it away and then love your life exactly how you did before as that is not true at all.

Efour · 12 Nov 2014 at 07:32

I think this is one of the most insane things to ever consider.
This is a whole nother level of risk and future consequences.
Good luck if you do it but it doesn't win you my respect.

Tefal · 12 Nov 2014 at 07:35

out of curiosity is everything going ok atm burnsey?

any stress, big changes, or even feeling like you're ina rut?

tom_nieto · 12 Nov 2014 at 07:51

It's an amazing thing to consider being a living donor. I'm definitely saving mine for my nearest and dearest I'm afraid. It's certainly not without its risks, and I would seriously consider making a financial donation to the cause instead. You might benefit more people doing that.

Narj · 12 Nov 2014 at 08:25

I'd be concerned about the recipient being a complete asshat. I mean the kind of person who gets a second chance then throws it away like George Best (I know that was liver and you can't donate your liver, but it was the first example I could think of!).

Also, N+1 is probably there for a reason. I agree with signing up as a donor if you want to help someone.

Burnsy2023 · 12 Nov 2014 at 09:45

Xordium said:
You may still live a normal, healthy and active life. You may also suffer complications. Those complications could take your normal, healthy and active life and turn it upside down for you and those that love you.

This is a risk and one that I'll need to make sure I'm completely comfortable with before I go ahead. I'll base this decision on the evidence and stats I can get during the assessment and consultation stage.

Xordium said:
Complications are far from 'rare'. The kidney could go to an adolescent who won't manage it but it is rushed in before their 18th birthday - this is actually quite likely.

I need to look into the actual stats of complications but this is one of the reasons I think I'd prefer a non-directed donation, I'd prefer not to know if it was unsuccessful.

Xordium said:
I am not saying this to be a **** but I presided over so many renal transplants in my life I can honestly say I have lost count. I've also presided over the subsequent nephrectomies a year or two later. I've seen bins with tacrolimus levels higher than the recipients blood - yes they chuck their meds. And I've seen people who have had a lifestyle that has placed them into end-stage renal failure something they could have prevented. And I've seen plenty of donors who are not living healthy happy lives.

I appreciate your comments and I'll weigh up the risks when I know more about it. I'm completely aware that these type of operation carries real risks, but so does the rest of life, so for me it's about making the right risks to rewards. On an aside, what do you do exactly?

Xordium said:
I just want you to really think about because some of the stuff you are putting there sets off alarm bells in me and you will not be given impartial advice from the people doing the assessment.

Why do you say that? In which way will it be biased?

Tefal said:
Don't do it put yourself down as an organ donor when you die but don't give away a kidney especially don't think you just give it away and then love your life exactly how you did before as that is not true at all.

Some people can, but I'm aware it has risks. I've been on the donor register for donations after death since I was 17.

Tefal said:
out of curiosity is everything going ok atm burnsey?

any stress, big changes, or even feeling like you're ina rut?

Not particularly. Life's not too bad at all at the moment really. Thanks for your concern though.

Narj said:
I'd be concerned about the recipient being a complete asshat.

This is why I don't want to know specific outcomes or recipients.

Redz · 12 Nov 2014 at 10:01

Why not just postpone the donation until a time you won't need either of your kidneys, i.e. carry a donor card and let strangers benefit after you are dead.

Tefal · 12 Nov 2014 at 10:08

Burnsy2023 said:
Not particularly. Life's not too bad at all at the moment really. Thanks for your concern though.

that's good, just big things like this can sometimes be someone trying to add meaning at a dark time.

btw you might want to see how this will affect work.

a lot of renal patients tend to suffer from fatigue

Burnsy2023 · 12 Nov 2014 at 10:13

Redz said:
Why not just postpone the donation until a time you won't need either of your kidneys, i.e. carry a donor card and let strangers benefit after you are dead.

I suppose this is the difference between people that donate to an aid campaign like Ebola and those who take the risk to go out to these countries with MSF.

Burnsy2023 · 12 Nov 2014 at 10:14

Tefal said:
btw you might want to see how this will affect work.

Already on that.

Tefal · 12 Nov 2014 at 10:15

Burnsy2023 said:
I suppose this is the difference between people that donate to an aid campaign like Ebola and those who take the risk to go out to these countries with MSF.

then why not do something like that? you could help a lot more people healthy through activity, than the one person you could help through donation.