Waitlist Zero - living donor petition

[plugger]

Support  Waitlist_Zero's efforts to support living donor kidney donations!  Currently they have put together a petition to push the Health Resources and Services Administration (HRSA) to do more.  One reason they haven't is they believe transplant surgery is risky.  One place this is addressed is here (myth number 14).  As a living donor from 14 years back, this one hits home for me (my daughter is still doing great by the way)

https://www.change.org/p/health-resources-and-services-administration-support-living-kidney-donation



EDITED: Moved to Transplant Discussion - Rerun, Admin.   

[kristina]

Thank you plugger for this interesting food-for-thought about his very emotional and personal matter.
There is one point though, which makes me wonder about the general fairness of kidney-transplantation:
Not too long ago – whilst in a waiting room - I read by chance an article in one of the newspapers,
 which questioned the fairness of kidney-transplantation in Britain.
The article stated, that the newsroom had been informed, that “one very rich and influential man from the Near East”
had travelled all the way to London in order to receive his kidney-transplant and he had received his kidney-transplant straight away
within the private health sector in the UK, ahead of the “usual” NHS-kidney-waiting-list. No waiting for him there ...
The article also stated, that the mother of the (diseased) donor was very distressed about this matter,
because her young son had died in an accident and she wanted "to do something good" and so she donated his organs
to help desperate patients within the National Health Service (NHS) in the UK...
But one of her sons kidneys was not donated to a desperate NHS-kidney-patient on the NHS kidney-waiting-list,
but instead it went straight to a rich merchant from the Middle East
who had travelled to Britain to receive his kidney-transplant within the private (money) health sector...

... Reading this article in a National newspaper made me wonder about the fairness of the kidney-transplant-system
and the kidney-transplant-waiting-list for NHS-patients ?
... The article was also printed in a National Newspaper read by millions of citizens in the UK... and I would not be overly surprised
if this article actually has put some formerly promising future-donors off the idea of even thinking about donating a kidney?
 
Another point that makes me wonder is the fact that my husband donates one of his kidneys, so that I may have a transplant.
We do have similar tissue but incompatible blood-groups and he donates one of his kidneys into the kidney-donation-pool,
that I may receive a donated kidney which is compatible with my own blood group.
My husband is fit and healthy, but how can we know that the kidney I may receive comes from a donor who is equally healthy ?
Thank you from Kristina.

[jeannea]

I don't think we can consider the organ donation system to be fair or not. Certain blood types wait longer because of supply and demand. That's not fair. The reasons people are rejected for the list often don't seem fair. We have a bunch of imperfect humans doing the best they can with a crappy situation.

As far as the kidney you receive, you are only allowed to have a little bit of information about them. I was told my donor was under 60 years old and the kidney was in good shape. The only way you get more information is if there are bad things they tell you when deciding to accept a kidney. I was offered one from a prostitute who comitted suicide. There was a chance of problems. I declined but maybe someone else said yes. You are not entitled to a lot of information about the donor under the current system. It is possible that in paired donation you could learn more but I doubt it.

I don't know anything about the article you mention. I wonder how the mother even knew who the kidney went to. She would not normally be told that kind of detailed information. That kind of story was also told about the US recently in an article. It said that dozens of US hospitals were selling kidneys to mideast rich people. But it was a general statement with no examples or proof. I think it is the latest scare story plus we need people to hate according to the media.

I look at it this way. We have given up so much control of our lives already. We are dependent on that dialysis machine. Just accept that you will never know everything about your donor and accept the kidney for what it is.

[kristina]

Thank you Jeannea,
I am so glad that you explained this to me, because it helps to set my mind at rest about this matter...
... Like yourself, I also was surprised that the mother knew, to whom a kidney of her son was donated to,
because I would not have thought that the private doctors of the transplant-team or the private recipient of the kidney
were in any contact with her...
... What I suspect is that someone inside or outside the transplant-team or that particular private hospital
was very disappointed about the procedure and gave the newspapers a little hint to investigate further
and the newspaper then contacted the mother to ask what she thought of it...

[plugger]

Thank you plugger for this interesting food-for-thought about his very emotional and personal matter.

You're welcome!  I was disappointed to hear about the NHS and the person from the Near East.  Brings to mind the controversy we had years ago when Steve Jobs got his liver transplant - though the NHS story sounds more blatant!

[kristina]

Thank you plugger for this interesting food-for-thought about his very emotional and personal matter.

You're welcome!  I was disappointed to hear about the NHS and the person from the Near East.  Brings to mind the controversy we had years ago when Steve Jobs got his liver transplant - though the NHS story sounds more blatant!

Hello again plugger and many thanks for the interesting article.
... It seems to be very difficult for us as patients to figure out,
how exactly the kidney-transplant-waiting-list "works" and how fair it really is ...
But it would appear, that as soon as serious money gets involved,
some of the fairness might perhaps sometimes get a little "stretched" away
from the real waiting-list...?
... As the French would say: C'est la vie....(That is life)...