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Advocacy Living Donor Misinformation

Living Donors BS from Across the Pond

“I had to ask my friends for a kidney”.

Really? You HAD to – like absolutely, someone had a gun at your head, no other option, HAD TO?

What typical recipient entitlement (yeah, I’m snarky today; be prepared). By my reckoning, the author could’ve A. accepted his disease and stayed on dialysis until a deceased donor kidney appeared or B. written treaties like this one with his sad tale of kidney failure and encouraged more people to sign up as organ donors or C (B-2) engaged on a crusade to change the system in England to opt-out, using his story of kidney failure and endless dialysis as a means of gaining sympathy.

Instead Mr. Isaacson chose to ENDANGER ANOTHER PERSON’S LIFE FOR HIS OWN GAIN. That’s right – choice. He made a conscious decision to benefit by permanently physically compromising someone else.

What I am certain of is that I would have no problem donating my organs on my death. The lack of information about donation is pathetic. We don’t realise that we can survive perfectly well on one kidney and the after-effects are negligible. It’s not such a difficult thing to do.

That’s really easy for a recipient who will never be put this position to say, isn’t it?

And worse, he’s wrong. People die during the surgery (2 in the past three months in the US). They suffer permanent and debilitating complications. They are at a lifetime higher risk of cardiac disease and death, not to mention renal failure. The lack of information you speak of is the reluctance of the transplant surgeons to tell the truth, that living donation is not safe and that they’re creating an entirely new class of patient for their own financial gain. (oh and that they really have no idea what the long-term effects are, since they didn’t bother collecting social security numbers until 1994)

Now for the comments, which is where we really find out what opinions the public holds on these issues. [note: all spelling and grammatical errors are those of the writer, not me]

MoveAnyMountain had a lot to say, and some of it quite contadictory:

But you would put many families of donors in the position of having their loved one’s body mutilated without their consent or even their knowledge.

In other words, it’s worse for a deceased donor’s body to be ‘mutiliated’ than for a living person’s life to be shortened and compromised? hmmm

Suppose we accept that organs should be given to those that need them. Someone might well save three or four lives with their kidneys, heart, lungs, corneas and so on. Would we thus be justified in humanely putting one person down to save so many others?

So it’s not okay to actually kill someone for their organs, but it’s okay to just maim them. AND it’s not okay to take organs from dead people who don’t need them anymore because it might hurt their family’s feelings? Am I getting this right?

On to others…

As I understand it, for kidney failure, donation vs dialysis affects – not survival – but quality of life.

and

These articles always fail to mention that there are two reasons for the large number of people waiting for kidneys. Of course they talk about numbers of donors, but never mention ways of reducing the number of people whose kindeys fail. Any ideas?

*clap, clap* (not snarky) Someone got it right. People can survive on dialysis for many, many years. Transplants are not cures; in fact, some folks fare worse with a transplant than on dialysis. Yes, dialysis has long-term side effects, but so do the anti-rejection meds needed post-transplant. Despite the public fact perpetuated by the media and transplant industry, there is no magic wand solution here.

Mr. Tim Warstall:

As ever, not enough observation of the real world going on here.

There’s one country without a waiting list for kidneys. There’s also only one country where there is a paid market for live donations.

Yes, not by chance, they’re both the same country, Iran.

The State pays around the average annual wage to a live donor (plus health care). The recipient can top up that amount if they want.

Translated into UK numbers that would mean a payment of around £25,000 to a live donor. A transplant costs under £20,000 and the drugs to prevent rejection £5,000 a year or so thereafter.

Dialysis costs around £30,000 a year.

It’s easy enough to see that this saves the NHS money after a couple of years: and, of course, we wouldn’t have the 1,000 people a year dying waiting for a kidney.

For some reason this logic never really seems to catch hold with people: some thought that having a market which saves lives is worse than having a not market which allows people to die.

*sigh* please read Ghods studies, and those coming out of India and Pakistan. Everyone benefits from legalized organ sales except the DONOR. The DONOR ends up in debt, with poor health and a sucky quality of life. Too bad Mr. Warstall doesn’t read past the headlines.

Being given someone else’s organs isn’t a human right, nor is donating one’s organs a civic duty. It’s a gift, an act of charity, once governme(s) become involved and demand the right to decide the fate of a person’s body and it’s organs then society is and will be changed for ever in ways we cannot even begin to imagine.

And yet some folks *cough*sallysatel*cough* would like the government to pay people to be living donors.

the hospitals will NOT allow and relative donation to go ahead if thier is the posibility of the donor getting kidney failure, and in addition thye will care of the NHS receive ANNUAL healthcheck ups for life, so are usually better look afte the the general health population.

The doctors don’t know what happens to living donors long-term. Considering the universal health care in the UK, they should, but they still don’t. So yes, they won’t let someone donate who has immediate risk factors for renal failure but they have no problem taking someone who has a family history of diabetes or kidney failure, not to mention mental health risk factors. They figure what happens more than a couple of years out isn’t their responsibility (in the US)

Yes there are risks to donating a kidney, but you are more likely to die in a traffic accident than from donating a kidney.

It’s proverbial apples and oranges. The statistics of living donor mortality are limited to those which occur within 90 days and the surgeons decide were a result of the surgery. Living donors have been put into permanent vegetative states, and others have suffered such debilitating complications or mental health issues they commit suicide years later. Others die prematurely due to cardiac issues or renal failure as a result of reduced renal function caused by the donation. Yet the industry doesn’t count all of that.

Here was my final comment on the article:

Let’s not kid ourselves, a transplant recipient advocating increased organ donation and living donation smacks of entitlement. It is unfortunate that most people pay no attention to an issue until it affects them directly, and then their opinions are perceived as colored by their own self-interest.

There is a vast difference between deceased dontion and living donation, and the constant joining of the two is tremendously disrespectful. While the transplant industry has been using living donors for over fifty years, no one has bothered to track or study them, so there is NO comprehensive long-term data on living donors’ health and well-being.

Let me repeat that: we don’t know how living donors fare long-term.

We do know that in the US 2.2 living donors die each year within 90 days of surgery, and 4.4 within 12 months. Some suffer from permanent nerve damage, pancreatitis, intestinal blockage, chylous ascites, testicular swelling and many other complications. Still others experience depression, anxiety, anger and PTSD yet not a single transplant center offers aftercare or support services.

Folks with reduced kidney function (and that includes living donors) are at a higher LIFETIME risk of cardiac disease and death, and renal failure. Recent studies indicate a 13-20 lag time post-donation before end-stage renal disease sets in.

Yet the transplant industry continues to deny these risks are real.

Sign your organ donor card, by all means. But don’t ever think being a living donor is nearly the same thing.

2 replies on “Living Donors BS from Across the Pond”

You are entitled to your view of course, however selfish. I have actually donated a kidney and to a stranger, not even to someone I know. For some people the very low risk involved are worth it to know that someone has truly got their life back. I don't expect you to understand what it is like being on dialysis. I also don't expect you to understand what it is like to want to help save someone's life and give them and their family another chance. And yes, I do know of all the risks involved. As for Iran .. well one of the reasons their waiting list is hardly there is not just because they pay donors but because so many people in outlying villages dont ever even get onto the transplant list when they should do. You keep your kidney, matey. I just hope you never need one.

Seems it's impossible to edit comments, so I have to start again (if I wasn't such a stickler for grammer and spelling….)

First off, I can hardly be called selfish since I AM a living donor (did you miss that?) and secondly, referring to me as such because you disagree with my facts is akin to me thinking you a coward because you commented anonymously.

Transplants are not cures; not everyone 'gets their life back'. The differece is that if a transplant fails, the industry's attitude is "we'll get you another organ". The donor doesn't have that luxury. S/he is never healed, never whole, and must live out an entire life in a compromised physical state.

So who's really being selfish – the recipient who doesn't care who has to sacrifice for their possibly increased quality of life…the surgeons who coach would-be recipients how to 'talk' to their families about living donation…the hospitals that are forecasting long-term budgets based on the number of living donor transplants done per year…or the healthy living donor who wants FULL and TRUE informed consent, adequate aftercare, REAL follow-up and VALID data collection and analysis, and proficient mental health and support services?

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