In this article I will go through some of the basic information needed to save a life by donating a kidney while you are still alive, and then look at a number of reasons why it is so difficult to get this sort of information out to the general public.
The waiting list for kidney transplants in America is over 100,000 (and growing at a rate of about 10,000 a year). Seventeen people a day die while waiting for a kidney transplant. (Note: Statistics in countries like Australia and England, where non-directed organ donations are still rare, are even worse.) And yet all it takes to save one of these lives is for someone to volunteer to donate a kidney.
Many hospitals in America will find the most deserving recipient for a non-directed (aka altruistic, Good Samaritan, or anonymous) kidney donor, i.e. someone who just wants to help a person suffering from kidney disease, whether they know the person or not. You just contact the hospital and say that you would like to donate a kidney to help someone on the transplant waiting list.
The preliminary testing is usually stretched out over six months to a year (to be sure that you are not acting impulsively and doing something that you will later regret). Recovery takes about six weeks, although most patients are up walking by the second day after surgery. Your body functions perfectly well with only one kidney, and so it is unlikely that you will have any permanent side effects from having made the donation. You can go on to live a full and normal life.
The risks of donating a kidney are on a par with having a baby. About one in 3,000 donors will die (although that figure includes deaths in the early days of kidney transplants when the death rate was higher). We are not aware of ANY deaths from non-directed donors, because the standards for non-directed donations are much higher than for related donations. (Hospitals are often pressured to accept less than ideal donors from a kidney patient's restricted list of willing friends or relatives.)
Most kidney disease strikes both kidneys simultaneously, so having only one kidney does not make one more likely to need a kidney, apart from traumatic injuries to the remaining kidney. Nevertheless, in America, if a kidney donor should later need a kidney themselves, priority is given to them for a transplant. Consequently, donating a kidney actually IMPROVES your protection against dying from kidney failure.
Some friends and I started learning this information about ten years ago. It wasn't long before several of us were thinking seriously about donating a kidney to someone who needed it. There was almost a race to see who could be first. We now understand that this is not unusual, that often family members have a similar competition in order to be able to save the life of a loved one. And others who have donated to strangers have said that they felt the same keen desire to be accepted as a donor, because they felt, like us, that it would be a great experience.
I now have more than twenty friends who have donated a kidney to a stranger, and this chain reaction has attracted a lot of media interest. Articles and documentaries have been produced by both the print media and the electronic media in Australia, England, and America, on what we have done, and, apart from a few positive reports in local newspapers, they have all been surprisingly negative.
The reporters each claimed to be wanting to write something nice about organ donations, yet, one by one, they each stabbed us in the back. We, understandably, reacted angrily each time. But now we are beginning to see how their reports are quite a natural reaction, and probably part of a necessary evolution with regard to live organ donations... and especially non-directed live organ donations. We are also seeing how this reaction is not terribly different from what many other undirected organ donors have experienced, from the media, the general public, government bodies, and sometimes even friends and relatives.
If more people knew the facts about the need for donors, we are confident that there would be more people volunteering to donate. But there seems to be a worldwide conspiracy to keep people from hearing the facts. Apart from local papers, which tend to give glowing reports about live donations, the stuff that hits the mass media is generally far more negative than positive. Unconfirmed horror stories abound about people being robbed of their organs, being coerced to give, and about evil doctors who have turned illegal organ donations into a big business (as though they could not make plenty of money by practicing medicine without doing something illegal).
So far in America, only about 400 people have donated their kidneys anonymously. That's a little over one person in a million. Why so few? My theory is that there are not ten people in a million who know all the facts that were listed at the start of this article. If they don't know about the need, and about how to donate, how will they ever do it? It seems that no one wants to tell them (and, sadly, that even includes the glowing reports in local newspapers, which seldom ever even suggests that others could do the same thing).
The general public simply does not know that they can save a life by donating one of their kidneys right now, while they are still alive. They are told that they can save lives by donating blood, and that they can save lives by volunteering to be a bone marrow donor. They are even told that they can save a life by donating a kidney after they die (although it is rare for anyone choosing to do this to actually die in circumstances where their willingness to donate a kidney will be of any use). But the masses have been kept ignorant of the benefits of donating a kidney right now... even though the entire waiting list for kidney transplants could be eliminated if even one person in 3,000 who heard what we have just said would decide to donate.
The rate of transplants from deceased donors (mostly people who have been killed in car accidents) has not increased significantly for many years. The main problem is that organs can only be taken from people who are pronounced brain dead and kept on life support during the time it takes to notify a recipient and get that person to the hospital. The organ is taken from the person on life support about the same time that the plug is pulled on the machine. An added problem is that a kidney taken like this lasts, on average, only about half as long as one taken from a live donor.
So why aren't people being told that they can donate a kidney while still alive? There seem to be two main reasons, and neither of them is very easy to proclaim without offending people: First, the people in control of such big organisations as the National Kidney Foundation, are generally not willing to donate a kidney themselves, and so they feel that it is not fair to encourage others to do something that they personally would not be willing to do. The second reason is that the people who have donated are heavily pressured not to encourage other people to donate. We are told that we would be showing off or that we would be laying heavy guilt trips onto the rest of society if we were to push for more emphasis on education about live non-directed organ donations.
On top of that, even the people in need of kidneys are often made to feel that they are 'begging' if they actively seek help from someone to save their life. Some people have been known to die without even telling their closest friends and relatives that they needed a donor.
It's true that donating a kidney to save a life is not everyone's cup of tea. But there are many people, like ourselves, who would be thrilled just to know that they could make such a difference with their life. I spoke to a group of elderly people at a nursing home about live organ donation and was flooded with requests for information on how they could donate. (Unfortunately, these people were all too old to be able to donate themselves, but I urged them to tell their children and grandchildren about it.)
There are even some rare cases of relatives of donors speaking out against organ donations (usually because of complications or poor hospital procedures which their relative experienced). The media welcomes such people with open arms, thus giving the public the impression that all donations end up that way. (And surprisingly, it is rarely the donor themselves that complains or features in the media reports, because most donors had already allowed for the possibility that things could have gone wrong. They are obviously disappointed, but many say that they would do it all again if they could.)
When the media chooses to do something positive on family members who donate, they rarely touch on the subject of someone being able to donate even if they don't have a relative in need. Some who have given to a close friend or relative have expressed the feeling that what they did is okay, but that anyone who gives to a stranger is going too far or may be just a little crazy. Media reports which put donors up on a pedestal without explaining how easy it would be for others to do the same thing, have the overall effect of making the general public feel that what has been done is unrealistic for 'normal' human beings.
I feel that it is the responsibility of those of us who have donated to stop all the flattery and to let people know the truth... that what we did is no big deal... at least not by comparison to the life and death battle that has been going on, often for many years, in the lives of the recipients. Others could do the same thing, and others would do the same thing if only they knew about it. Not everyone perhaps, but enough to solve the shortage of kidneys.
We live in a world where there is a lot of talk about doing good; but in reality most of us do not like anyone coming across as better than ourselves. Such people embarrass us and make us feel uncomfortable. Usually we can just ignore those whom we perceive as super-saints, largely because we do not bump into such people very often; but if someone persists in calling for others to imitate what they have done (on the grounds that it was not heroic so much as an exciting adventure), then we have to de-value their actions, and to ridicule them as extreme, maybe even dangerous.
I have listed quite a few ways in which teaching on live unrelated organ donations can be silenced before it ever begins. Those who have heard and decided against donating plug up the communication channels for everyone else. They tell themselves that people who do donate altruistically are crazy or fanatics, and they try to convince themselves and others that there is some other 'easy' solution (e.g. signing donor cards or maybe even harvesting the organs of animals) Can you see how this 'conspiracy' has worked so effectively to stop people from hearing the facts?
Nevertheless, if there are enough people willing to take a stand against this attitude, then over time live undirected kidney donations will become almost as widely accepted as bone marrow donations are today. And when that happens, the same people who condemned us when we started pushing for more live non-directed kidney donations will praise those of us who pushed for such a change. It's just the way society works.
So if you want to be part of the change, start checking into what is involved in donating a kidney. I recommend that you visit livingdonorsonline.com where you will find people (mostly live organ donors and people contemplating live organ donations) arguing both sides, but also sharing lots of practical information from their own experiences.
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