Monday I woke with a swollen and itchy right eye. Nothing to get too panicky about; I'm afflicted with myriad environmental allergies, so I assumed I managed to get a microscopic bit of something in there and it reacted badly. Took an antihistamine and assumed all would be well.
Tuesday, I woke up with a redder, angrier eye, almost swollen shut. Not acceptable. I make a trip to my long-time family physicians, who tells me, with her gentle smile, that my karma is catching up with me for laughing at my friend's recent bout with Conjunctivitis (aka Pink Eye). She agreed it was an allergy, prescribed me some heavy-duty antihistamines and sent me on my way.
Fought said scary eye the rest of the week, rising at 8am, taking my meds, and crashing from them at approximately noon. The whole exercise made me slightly off-kilter, my reduced eyesight notwithstanding. I fear for any emails sent or manuscript words written.
The end of my week found me at Calling Hours and a funeral for PGrumpy's grandpa. I managed to mask my affliction with muted eyeshadow - it's a good think pink is in, you know?
Around the same time, PGrumpy and I began contemplating, connecting dots so to speak, and cautiously resolving. At approximately the same time as the 'eye issue', three welts, blisters, what-have-you, appeared on the top of my right hand between the webbing of my thumb and index finger. Nasty looking thing, to tell the truth, so much so that I donned a Band-Aid for the funeral. It's unsightly if the Band-Aid is better than the boo-boo.
Long story short - if that's possible - I am the victim of vicious plant-life. Poison oak, ivy, sumac, etc. which I most likely wiped on my eye as well as spread (in much smaller amounts) to my back, the area between my index and middle fingers, shin, neck, etc. I live in the land of many trees you see, with gobs of unidentified flora and fauna. This, this week of unrelenting itching, swelling, ice packs, dope-head meds, and all means of anti-itch cremes is the result of me being responsible.
This is the reward I get for doing yardwork. Cursed nature.
Sunday, May 30, 2010
Thursday, May 27, 2010
Living Donor Faux Pas
Recently, a post appeared on a message board from a prospective liver donor whose recipient died before the donor evaluation process could take place. Naturally, what followed were words of condolescence, sympathy and concern.
Then an unrelated kidney donor (meaning, someone who donated a kidney to an individual not emotionally tied to them) posted the following (in part):
You might want to give some thought in the future of possibly donating a kidney... There are SO many people that you have never even heard of whose quality of life could be improved by such a gift. But better to let your emotions settle down a bit before making such a decision.
If you're not already disturbed, and I hope you are, I'll explain why this was a wholly inappropriate thing to say.
On a broad level, one simply shouldn't respond to expressions of vulnerability with suggestions. Women generally accuse men of this - trying to 'fix' a problem when a solution was neither wanted or required. Sometimes this occurs because a person simply doesn't know how to respond to someone else's emotionality. Other times it's just an inability to get out of one's own way.
Remember: anything important enough to be felt as a loss cannot be replaced. One would not tell a new widow, "I'm sorry for your loss. When you're done grieving, call me because I have someone I'd like to set you up with". Neither should one think that recipients are interchangable, especially when the original is a relative (uncle) and the alternate is a total stranger.
Here's where we become situation specific. The overwhelming majority of living donors are blood relatives of their recipients, and the next biggest percentage are emotionally tied (spouse, friend, etc). The smallest chunk are the so-called Altruistic, Stranger, or Anonymous Donors. While the behavior of donating an organ might be the same across both groups, the motivations of Emotionally/Blood Related and Unrelated Donors are quite different.
Related Donors are invested in the well-being of their loved one. Their decision to donate is inextricably tied to that specific person. They are not interested in living donation in theory, or as an exercise, but only as a means of helping the person they care about. An Unrelated Donor, otoh, is attached to the greater concept of 'saving a life' via living donation. The act of donating is its own end. Consequently, the recipient of the Unrelated Donor's organ is relatively (as it pertains to the overall experience) insignificant*.
Consequently, telling a prospective Related Donor that a stranger is as worthy of their beneficence as their loved one has the potential to be incredibly insulting. Unfortunately, if the person offering the suggestion is an Unrelated Donor, it's quite possible they won't understand why that's so.
Which is exactly what happened in this case. When the gaff was pointed out, the Unrelated Donor emphasized the sympathetic portion of their sentiment while refusing to acknowledge the inappropriateness of their (in their mind) well-intentioned suggestion. In fact, they accused the person who brought it up as being anti-living donation. The Unrelated Donor in question should know better on both counts, the original remark and the defensive smear - after all, s/he's a member of the clergy.
*Some Unrelated Donors will disagree with me on this, but think about it - what's the difference between one stranger and another? If it's not one particular single mother profiled in the newspaper, it's another equally anonymous one on a website. In fact, it's exactly what Steve Jobs and the proponents of the CA living donor registry are banking on.
Then an unrelated kidney donor (meaning, someone who donated a kidney to an individual not emotionally tied to them) posted the following (in part):
You might want to give some thought in the future of possibly donating a kidney... There are SO many people that you have never even heard of whose quality of life could be improved by such a gift. But better to let your emotions settle down a bit before making such a decision.
If you're not already disturbed, and I hope you are, I'll explain why this was a wholly inappropriate thing to say.
On a broad level, one simply shouldn't respond to expressions of vulnerability with suggestions. Women generally accuse men of this - trying to 'fix' a problem when a solution was neither wanted or required. Sometimes this occurs because a person simply doesn't know how to respond to someone else's emotionality. Other times it's just an inability to get out of one's own way.
Remember: anything important enough to be felt as a loss cannot be replaced. One would not tell a new widow, "I'm sorry for your loss. When you're done grieving, call me because I have someone I'd like to set you up with". Neither should one think that recipients are interchangable, especially when the original is a relative (uncle) and the alternate is a total stranger.
Here's where we become situation specific. The overwhelming majority of living donors are blood relatives of their recipients, and the next biggest percentage are emotionally tied (spouse, friend, etc). The smallest chunk are the so-called Altruistic, Stranger, or Anonymous Donors. While the behavior of donating an organ might be the same across both groups, the motivations of Emotionally/Blood Related and Unrelated Donors are quite different.
Related Donors are invested in the well-being of their loved one. Their decision to donate is inextricably tied to that specific person. They are not interested in living donation in theory, or as an exercise, but only as a means of helping the person they care about. An Unrelated Donor, otoh, is attached to the greater concept of 'saving a life' via living donation. The act of donating is its own end. Consequently, the recipient of the Unrelated Donor's organ is relatively (as it pertains to the overall experience) insignificant*.
Consequently, telling a prospective Related Donor that a stranger is as worthy of their beneficence as their loved one has the potential to be incredibly insulting. Unfortunately, if the person offering the suggestion is an Unrelated Donor, it's quite possible they won't understand why that's so.
Which is exactly what happened in this case. When the gaff was pointed out, the Unrelated Donor emphasized the sympathetic portion of their sentiment while refusing to acknowledge the inappropriateness of their (in their mind) well-intentioned suggestion. In fact, they accused the person who brought it up as being anti-living donation. The Unrelated Donor in question should know better on both counts, the original remark and the defensive smear - after all, s/he's a member of the clergy.
*Some Unrelated Donors will disagree with me on this, but think about it - what's the difference between one stranger and another? If it's not one particular single mother profiled in the newspaper, it's another equally anonymous one on a website. In fact, it's exactly what Steve Jobs and the proponents of the CA living donor registry are banking on.
Tuesday, May 25, 2010
More Evidence Against Compensating Living Donors
Since the entire transplant system was centered around the needs of the recipient, it shouldn't be surprising that paying people for their kidneys is an idea that just won't go away. However, it's an idea that has been tried - and failed - in numerous other countries, as the literature repeatedly reveals.
From The Hastings Center Report # 39, comes the following on kidney vendors (sellers/donors) in Pakistan:
- Of thirty-two vendors, 3 attended school until grade four, the rest were illiterate.
- All except two had sold a kidney to pay off debts owed to zamindars (feudal land owner); a majority was either still in debt or hadvvaccumulated new debts.
- None reported receiving the total amount they had been promised, and almost all had to pay Rs. 10,000 to Rs. 20,000 to the middleman.
- None of the vendors questioned directly, except one, would recommend selling a kidney to anyone else, including those who had managed to pay off their debts.
- three had elevated blood pressure readings or blood or protein in their urine—significant findings in anyone with one kidney.
- 20 were assessed with the SRQ for anxiety & depression; 10 expressed symptoms & scores high enough to warrant a mental health referral.
- 2/10 were suicidal. 1 attempted suicide with pills.
- All vendors, including those with a nephrectomy done over three years ago, complained of symptoms related to their surgical incision (pain, spasms, pricking), even though an examination revealed well-healed surgical scars.
- Many also complained of tiredness, generalized kamzori (weakness), chukkar (dizziness), and shortness of breath while working. All expressed an inability to work as hard as before, a perception confirmed by family members with whom we spoke.
- Many vendors described pain, numbness, or a burning sensation in the left arm and shoulder or the left side of the abdomen. Some also had leftsided headaches. With these symptoms came a sense of emptiness. This curious sense of feeling “half,” being “empty,” somehow having been transformed into an “incomplete” person, was among the most common statements we heard.
- Some vendors offered unsolicited opinions about the hospitals and physicians involved in transplantations. One man bitterly described the hospital as sub karobar hay (it is all a business) and said he would never return. He characterized those connected to the hospital as kasaee (butchers) and said he hated the place because sub jhootay hein (they are all liars).
- A sense of being victimized and deceived by the medical profession was expressed in general terms, and none knew the name of the surgeon or other physicians in the hospital. (All, however, were familiar with the names of middlemen.) Hospitals and staff were described variously as sub choree da kaam ay (in a business of theft), sub daqa shahi ain (all are the kings of thieves), dhokay baz (those who deceive others) and destroy lives like phansee ka phanda (a noose for hanging people).
- Our empirical data suggests selling a kidney carries negative social, psychological, and emotional ramifications that extend far beyond the vendor to the immediate and extended family and also to the community. In this light, the arguments for organ markets as merely a transaction between two freestanding biological entities exercising their autonomy, seemingly in a vacuum, can be reductive and misleading.
- In the words of the vendors, they sell a kidney because of majboori—a word meaning lack of options, a situation over which one has no control—in order to fulfill what they see as obligations toward immediate and extended families in which they are inextricably embedded, and within systems of social and economic inequalities they can neither control nor escape.
All studies to date clearly indicate that it is the most disadvantaged and the most vulnerable in any society who resort to selling a kidney, and that they do so only when they are left with no other alternatives to feed their families, pay off debts, or get health care. When we consider whether to legalize some form of kidney commerce, then, we should not overlook the fact that it is always the poor and the disadvantaged who end up exercising a “right” or “freedom” to sell their kidneys.
Farhat Moazam, ., Riffat Moazam Zaman, ., & Aamir M. Jafarey, . (2009). Conversations with Kidney Vendors in Pakistan: An Ethnographic Study Hastings Center Report, 39 (3), 29-44 DOI: 10.1353/hcr.0.0136
From The Hastings Center Report # 39, comes the following on kidney vendors (sellers/donors) in Pakistan:
- Of thirty-two vendors, 3 attended school until grade four, the rest were illiterate.
- All except two had sold a kidney to pay off debts owed to zamindars (feudal land owner); a majority was either still in debt or hadvvaccumulated new debts.
- None reported receiving the total amount they had been promised, and almost all had to pay Rs. 10,000 to Rs. 20,000 to the middleman.
- None of the vendors questioned directly, except one, would recommend selling a kidney to anyone else, including those who had managed to pay off their debts.
- three had elevated blood pressure readings or blood or protein in their urine—significant findings in anyone with one kidney.
- 20 were assessed with the SRQ for anxiety & depression; 10 expressed symptoms & scores high enough to warrant a mental health referral.
- 2/10 were suicidal. 1 attempted suicide with pills.
- All vendors, including those with a nephrectomy done over three years ago, complained of symptoms related to their surgical incision (pain, spasms, pricking), even though an examination revealed well-healed surgical scars.
- Many also complained of tiredness, generalized kamzori (weakness), chukkar (dizziness), and shortness of breath while working. All expressed an inability to work as hard as before, a perception confirmed by family members with whom we spoke.
- Many vendors described pain, numbness, or a burning sensation in the left arm and shoulder or the left side of the abdomen. Some also had leftsided headaches. With these symptoms came a sense of emptiness. This curious sense of feeling “half,” being “empty,” somehow having been transformed into an “incomplete” person, was among the most common statements we heard.
- Some vendors offered unsolicited opinions about the hospitals and physicians involved in transplantations. One man bitterly described the hospital as sub karobar hay (it is all a business) and said he would never return. He characterized those connected to the hospital as kasaee (butchers) and said he hated the place because sub jhootay hein (they are all liars).
- A sense of being victimized and deceived by the medical profession was expressed in general terms, and none knew the name of the surgeon or other physicians in the hospital. (All, however, were familiar with the names of middlemen.) Hospitals and staff were described variously as sub choree da kaam ay (in a business of theft), sub daqa shahi ain (all are the kings of thieves), dhokay baz (those who deceive others) and destroy lives like phansee ka phanda (a noose for hanging people).
- Our empirical data suggests selling a kidney carries negative social, psychological, and emotional ramifications that extend far beyond the vendor to the immediate and extended family and also to the community. In this light, the arguments for organ markets as merely a transaction between two freestanding biological entities exercising their autonomy, seemingly in a vacuum, can be reductive and misleading.
- In the words of the vendors, they sell a kidney because of majboori—a word meaning lack of options, a situation over which one has no control—in order to fulfill what they see as obligations toward immediate and extended families in which they are inextricably embedded, and within systems of social and economic inequalities they can neither control nor escape.
All studies to date clearly indicate that it is the most disadvantaged and the most vulnerable in any society who resort to selling a kidney, and that they do so only when they are left with no other alternatives to feed their families, pay off debts, or get health care. When we consider whether to legalize some form of kidney commerce, then, we should not overlook the fact that it is always the poor and the disadvantaged who end up exercising a “right” or “freedom” to sell their kidneys.
Farhat Moazam, ., Riffat Moazam Zaman, ., & Aamir M. Jafarey, . (2009). Conversations with Kidney Vendors in Pakistan: An Ethnographic Study Hastings Center Report, 39 (3), 29-44 DOI: 10.1353/hcr.0.0136
Friday, May 21, 2010
For Your Reading Pleasure...
A living kidney donor and (full disclosure) friend of mine just had an essay published on her experience.
You can read it at From the Other Side
You can read it at From the Other Side
Sunday, May 16, 2010
The Complexities of a Solicited Living Donor
According to various news reports, Dolly Carew posted a profile on a donor-solicitation website. (I'm not naming such website because I think what they do is unethical and I'm not giving them more press. Yes, they charge a fee to the would-be recipients for posting a profile, but that's not the only reason I find them repulsive). Usually, prospective LDs scroll through the list of would-be recipients, choosing one to be their beneficiary. Playing God, in other words.
But according to one report, Carew's sister found Randall on the site's list of available donors, so he had put himself out there to donate to whoever was willing to have him.
While the details are sketchy (darned privacy and HIPPA laws), a press release from Albert Einstein Medical Center states that Randall was cleared to be a living donor, and offered a chance to donate through a paired donation. Carew and Randall (photo) would be paired with another would-be recipient and prospective donor and the kidneys swapped. Randall's kidney would be transplanted into the other would-be recipient (a stranger, just as Dolly was a stranger when they hooked up on the website), while the other prospective living donor's kidney would be transplanted into Dolly. Yes, Carew would still receive a transplant.
While we can't know exactly why Einstein suggeted this route, kidney swaps and chains in general were created to A. increase the quantity of transplants done and B. improve the quality of transplanted organs. After all, blood type compatibilities prevent transplants from taking place, and HLA matching does affect the longevity of the graft post-transplant. In other words, the better the match, the longer the transplant lasts statistically speaking. Plus, the lower the match, the more anti-rejection meds the recipient must take, which have their own long-term detrimental side effects.
Carew and Randall talked it over and decided not to participate in a paired donation scenario. Randall wanted (and so did Carew), his kidney to be transplanted into her. By now, they had developed a "close relationship" - "bonded", in their own words, despite his initial willingness to cough up a kidney to just anyone (as evidenced by his registration on the site). Eight days before the scheduled transplant, Einstein Medical Center cancelled the procedure, setting off a firestorm of angry words, speculative news articles and blogs, and really, really uninformed reader comments.
Einstein Medical Center issued the following statement to relevant media outlets:
“Einstein very much wanted to perform a kidney transplant for Dolly Carew and initially offered a paired kidney donation process. In this process, Bob Randall would have been able to donate a kidney through a paired exchange, but Ms. Carew would receive a kidney from a different donor. As he stated, Mr. Randall refused to donate in this way. As we continued the evaluation process, Einstein had reason to believe that Mr. Randall lied during the evaluation process for the donation to Ms. Carew, which precluded him from being her kidney donor. Einstein stands by its decision to postpone Ms. Carew’s transplant surgery. We regret the anguish this situation has caused Ms. Carew and her family, and we are sincere in our desire to help her. It is our hope that she understands we are looking out for her best interests and in no way are discriminating against her, which has been reported.”
Einstein also sent a letter to Bob Randall, which can be read here.
Carew tried another transplant center in the Philly area, but was denied - A previous "Internet connection" transplant in 2007 had resulted in "controversy."
The public will never know Einstein's real and detailed reasons for cancelling this surgery. A couple of news articles have hinted (per Carew and Randall) that Randall wasn't eliminated as a living donor totally, just as Carew's living donor. I didn't get that impression at all, but there is always the possibility they are in possession of facts I am not privy to.
That being said, Carew is the single mother of a 9 year old daugther, and multiple articles stated the growing closeness of Randall with that child. An astute commenter revealed that Randall has a history of bad business practices on Ebay, but more importantly is a registered sex offender in Indiana. Could this be the "lie" or "compromising position" Einstein referred to in their missives? If so, the entire drama might've been prevented if Randall and Carew had remained strangers, or if Randall had agreed to the Paired Donation in the first place.
PS. The pair has found a hospital in Denver willing to perform the transplant, but Carew doesn't have the money to make it happen so far from home.
But according to one report, Carew's sister found Randall on the site's list of available donors, so he had put himself out there to donate to whoever was willing to have him.
While the details are sketchy (darned privacy and HIPPA laws), a press release from Albert Einstein Medical Center states that Randall was cleared to be a living donor, and offered a chance to donate through a paired donation. Carew and Randall (photo) would be paired with another would-be recipient and prospective donor and the kidneys swapped. Randall's kidney would be transplanted into the other would-be recipient (a stranger, just as Dolly was a stranger when they hooked up on the website), while the other prospective living donor's kidney would be transplanted into Dolly. Yes, Carew would still receive a transplant.
While we can't know exactly why Einstein suggeted this route, kidney swaps and chains in general were created to A. increase the quantity of transplants done and B. improve the quality of transplanted organs. After all, blood type compatibilities prevent transplants from taking place, and HLA matching does affect the longevity of the graft post-transplant. In other words, the better the match, the longer the transplant lasts statistically speaking. Plus, the lower the match, the more anti-rejection meds the recipient must take, which have their own long-term detrimental side effects.
Carew and Randall talked it over and decided not to participate in a paired donation scenario. Randall wanted (and so did Carew), his kidney to be transplanted into her. By now, they had developed a "close relationship" - "bonded", in their own words, despite his initial willingness to cough up a kidney to just anyone (as evidenced by his registration on the site). Eight days before the scheduled transplant, Einstein Medical Center cancelled the procedure, setting off a firestorm of angry words, speculative news articles and blogs, and really, really uninformed reader comments.
Einstein Medical Center issued the following statement to relevant media outlets:
“Einstein very much wanted to perform a kidney transplant for Dolly Carew and initially offered a paired kidney donation process. In this process, Bob Randall would have been able to donate a kidney through a paired exchange, but Ms. Carew would receive a kidney from a different donor. As he stated, Mr. Randall refused to donate in this way. As we continued the evaluation process, Einstein had reason to believe that Mr. Randall lied during the evaluation process for the donation to Ms. Carew, which precluded him from being her kidney donor. Einstein stands by its decision to postpone Ms. Carew’s transplant surgery. We regret the anguish this situation has caused Ms. Carew and her family, and we are sincere in our desire to help her. It is our hope that she understands we are looking out for her best interests and in no way are discriminating against her, which has been reported.”
Einstein also sent a letter to Bob Randall, which can be read here.
Carew tried another transplant center in the Philly area, but was denied - A previous "Internet connection" transplant in 2007 had resulted in "controversy."
The public will never know Einstein's real and detailed reasons for cancelling this surgery. A couple of news articles have hinted (per Carew and Randall) that Randall wasn't eliminated as a living donor totally, just as Carew's living donor. I didn't get that impression at all, but there is always the possibility they are in possession of facts I am not privy to.
That being said, Carew is the single mother of a 9 year old daugther, and multiple articles stated the growing closeness of Randall with that child. An astute commenter revealed that Randall has a history of bad business practices on Ebay, but more importantly is a registered sex offender in Indiana. Could this be the "lie" or "compromising position" Einstein referred to in their missives? If so, the entire drama might've been prevented if Randall and Carew had remained strangers, or if Randall had agreed to the Paired Donation in the first place.
PS. The pair has found a hospital in Denver willing to perform the transplant, but Carew doesn't have the money to make it happen so far from home.
Saturday, May 15, 2010
Erroneous Living Donor Analogy of the Day
Women die in childbirth too but no one calls for an end to pregnancy
OR
For those that think living donation is unethical because of the risks, then they must think pregnancy and childbirth is unethical too.
Let me begin by stating the obvious: reproduction is a biological function. All living creatures do it in one way or another. Last time I checked, no other life form aside from human beings swap organs.
2. Pregnancy and childbirth is done by one person - the mother. Sure, we've created midwifes and other medical personnel to increase the safety of the mother and baby, and head-off any complications, but for millenia women squatted in fields or caves and pushed out Junior, thereby perpetuating humanity. If intevention was required for reproduction, our planet would be nothing but a lifeless husk. Instead, we're rife with flora, fauna, animal, vegetable, bacterium, etc.
Living donors, on the other hand, do not remove their own kidney (liver, etc.); an entire surgical team is required, with specialized knowledge, tools and resources. If all hospitals and medical personnel refused to perform living donations, the practice would stop. Conversely, if the same were true of pregnancy and childbirth, babies would still keep popping up in the world.
3. Because pregnancy and childbirth has occurred since the dawn of time, humanity has amassed a wealth of knowledge on the subject. Can the same be said of living donors and living donation? No. Living donation has only existed for fifty years. In addition, no one in the medical community has bothered to track, follow or study living donors in any sort of comprehensive manner.
4. The public is aware that some women die or experience major complications during pregnancy and childbirth. A simple web search will bring up myriad websites, and a trip to amazon.com will fill an entire bookshelf with tomes regarding the matter. In fact, I received an email from credo.com the other day about the "Global MOMS Act" that will expand access to quality maternal health services. The risks and pitfalls of pregnancy and childbirth have been discussed, written about and are supported by society at large.
This is the complete and total opposite of the living donor experience. Until 2006, no agency had any sort of purview over living donation at all, and since then, UNOS/OPTN policies have been lax and 'voluntary'. As one of my recent blog posts stated, transplant centers are only required to submit follow-up forms for living donors at the six-month, one-year and two-year mark (not that they, personally, are required to see the living donors. No, they can simply mail the form to the living donor and it is up to her/him to see their primary care physician, complete the physical and ensure the form is submitted). Yet MULTIPLE transplant centers have reported ALL of their LDs 'lost to follow-up', even though the mandate stipulates a 95% compliance rate.
In addition, even if one accepts the transplant industry's stated mortality figures, one or two living donors will die every year as a direct result of the procedure - within 90 days of surgery - yet this information is kept quiet; covered up by the hospitals and UNOS/OPTN and hidden from the public. Living donor deaths after the 90 day post-op period are automatically reported as not being as a result of the nephrectomy or life with one kidney. Since the transplant industry denies any long-term risks of living donation, it's easy for them to call the deaths 'unrelated'.
5. In the vast majority of cases, pregnancy and childbirth does not leave a woman at lifetime risk for greater health issues. Unless something goes terribly awry, women are able to assume the same quality of life post-childbirth/pregnancy as before.
Living donors however, assume higher risks for cardiac disease, hypertension and kidney failure, which they're usually not informed of prior to the surgery (see Housawi 2007). While long-term studies have not been done on living donors, much research has been conducted on those with suppressed kidney function and those who've had a kidney removed out of necessity.
While most LDs, as well as transplant professionals, would like to perpetrate the myth that 'one kidney is enough', the post-donation GFR of kidney donors puts LDs in the beginning stages of kidney disease and categorizes us as having reduced renal function. Bad PR or not, LDs have assumed the same complications and warnings as those diagnosed with chronic kidney disease.
We are not the 'general population'; post-pregnancy or post-childbirth women are.
OR
For those that think living donation is unethical because of the risks, then they must think pregnancy and childbirth is unethical too.
Let me begin by stating the obvious: reproduction is a biological function. All living creatures do it in one way or another. Last time I checked, no other life form aside from human beings swap organs.
2. Pregnancy and childbirth is done by one person - the mother. Sure, we've created midwifes and other medical personnel to increase the safety of the mother and baby, and head-off any complications, but for millenia women squatted in fields or caves and pushed out Junior, thereby perpetuating humanity. If intevention was required for reproduction, our planet would be nothing but a lifeless husk. Instead, we're rife with flora, fauna, animal, vegetable, bacterium, etc.
Living donors, on the other hand, do not remove their own kidney (liver, etc.); an entire surgical team is required, with specialized knowledge, tools and resources. If all hospitals and medical personnel refused to perform living donations, the practice would stop. Conversely, if the same were true of pregnancy and childbirth, babies would still keep popping up in the world.
3. Because pregnancy and childbirth has occurred since the dawn of time, humanity has amassed a wealth of knowledge on the subject. Can the same be said of living donors and living donation? No. Living donation has only existed for fifty years. In addition, no one in the medical community has bothered to track, follow or study living donors in any sort of comprehensive manner.
4. The public is aware that some women die or experience major complications during pregnancy and childbirth. A simple web search will bring up myriad websites, and a trip to amazon.com will fill an entire bookshelf with tomes regarding the matter. In fact, I received an email from credo.com the other day about the "Global MOMS Act" that will expand access to quality maternal health services. The risks and pitfalls of pregnancy and childbirth have been discussed, written about and are supported by society at large.
This is the complete and total opposite of the living donor experience. Until 2006, no agency had any sort of purview over living donation at all, and since then, UNOS/OPTN policies have been lax and 'voluntary'. As one of my recent blog posts stated, transplant centers are only required to submit follow-up forms for living donors at the six-month, one-year and two-year mark (not that they, personally, are required to see the living donors. No, they can simply mail the form to the living donor and it is up to her/him to see their primary care physician, complete the physical and ensure the form is submitted). Yet MULTIPLE transplant centers have reported ALL of their LDs 'lost to follow-up', even though the mandate stipulates a 95% compliance rate.
In addition, even if one accepts the transplant industry's stated mortality figures, one or two living donors will die every year as a direct result of the procedure - within 90 days of surgery - yet this information is kept quiet; covered up by the hospitals and UNOS/OPTN and hidden from the public. Living donor deaths after the 90 day post-op period are automatically reported as not being as a result of the nephrectomy or life with one kidney. Since the transplant industry denies any long-term risks of living donation, it's easy for them to call the deaths 'unrelated'.
5. In the vast majority of cases, pregnancy and childbirth does not leave a woman at lifetime risk for greater health issues. Unless something goes terribly awry, women are able to assume the same quality of life post-childbirth/pregnancy as before.
Living donors however, assume higher risks for cardiac disease, hypertension and kidney failure, which they're usually not informed of prior to the surgery (see Housawi 2007). While long-term studies have not been done on living donors, much research has been conducted on those with suppressed kidney function and those who've had a kidney removed out of necessity.
While most LDs, as well as transplant professionals, would like to perpetrate the myth that 'one kidney is enough', the post-donation GFR of kidney donors puts LDs in the beginning stages of kidney disease and categorizes us as having reduced renal function. Bad PR or not, LDs have assumed the same complications and warnings as those diagnosed with chronic kidney disease.
We are not the 'general population'; post-pregnancy or post-childbirth women are.
Tuesday, May 11, 2010
Organ Donation and Utilization in the US 1998-2008
This report is spit out every year, always behind due to a lag in data collection. What's interesting, and the title says it all, is that there is no concern about living donors beyond who, how many, where and how they kicked out an organ.
Here are the highlights:
In 2008 unrelated, nonspousal relationships such as friends, in-laws or anonymous donors were most common (26%)...A small part of the increase in unrelated, nonspouse relationships may be attributed to the emergence of kidney chains, though chains are still relatively new and cannot account for the entire increase.
What annoys me about this statement is that it's so painfully disingenuous. The authors are batting their eyelashes saying, "Gee, we have no idea why unrelated donation has increased" when in truth, transplant centers such as Loyola have begun an actual program to "Pay It Forward" encouraging folks to give a kidney to a stranger and/or as part of a kidney chain. Other transplant centers have begun progams to *cough* educate *cough* the public about unrelated/stranger/anonymous living donation.
Even more than that, surgeons are actively promoting living donation to would-be recipients, telling them to 'find a donor'. Some (and this includes the so-called educational seminars) are teaching these would-be recipients how and where to solicit for donors. At no time, of course, are they telling recipients the risks inherent to living donation or the dearth of aftercare or long-term data.
So, the authors, the transplant centers and UNOS/OPTN know perfectly well why the rates of unrelated donation have increased. They simply don't want to admit to not only accepting solicited living donors, but encouraging their solicitation.
Of the 6732 living donors who donated an organ in 2006, more than 30% were lost to follow-up. There is significant variation among centers in terms of the percentage of donors for whom follow-up data is missing with some centers declaring no available follow-up for 100% of their donors.
This is about where my head exploded. "Some" transplant centers are declaring NO follow-up for 100% of their living donors. There cannot be a more blatant expression of how little these people care about the fate of their living donors. Worse, this UNOS/OPTN policy went into effect in 2006 yet not a single transplant center has been punished, penalized, chastized, warned or otherwise for this behavior. I say this not just based on my disdain of OPTN or their history of overlooking such egregious slights, but because they proudly issued a press release a short time ago stating that for the 'first time' they've notified transplant centers of the 'importance' of complying with the follow-up policy. These transplant programs have given the double-middle finger to the Department of Health and Human Services who oversees the US transplant system, and more so, to the taxpaying general public who allows them to exist. A toothless letter from an agency that sucks from their teet is hardly going to make anyone tremble in their expensive, designer shoes.
Tuttle-Newhall, J., Krishnan, S., Levy, M., McBride, V., Orlowski, J., & Sung, R. (2009). Organ Donation and Utilization in the United States: 1998-2007 American Journal of Transplantation, 9 (4p2), 879-893 DOI: 10.1111/j.1600-6143.2009.02565.x
Here are the highlights:
In 2008 unrelated, nonspousal relationships such as friends, in-laws or anonymous donors were most common (26%)...A small part of the increase in unrelated, nonspouse relationships may be attributed to the emergence of kidney chains, though chains are still relatively new and cannot account for the entire increase.
What annoys me about this statement is that it's so painfully disingenuous. The authors are batting their eyelashes saying, "Gee, we have no idea why unrelated donation has increased" when in truth, transplant centers such as Loyola have begun an actual program to "Pay It Forward" encouraging folks to give a kidney to a stranger and/or as part of a kidney chain. Other transplant centers have begun progams to *cough* educate *cough* the public about unrelated/stranger/anonymous living donation.
Even more than that, surgeons are actively promoting living donation to would-be recipients, telling them to 'find a donor'. Some (and this includes the so-called educational seminars) are teaching these would-be recipients how and where to solicit for donors. At no time, of course, are they telling recipients the risks inherent to living donation or the dearth of aftercare or long-term data.
So, the authors, the transplant centers and UNOS/OPTN know perfectly well why the rates of unrelated donation have increased. They simply don't want to admit to not only accepting solicited living donors, but encouraging their solicitation.
Of the 6732 living donors who donated an organ in 2006, more than 30% were lost to follow-up. There is significant variation among centers in terms of the percentage of donors for whom follow-up data is missing with some centers declaring no available follow-up for 100% of their donors.
This is about where my head exploded. "Some" transplant centers are declaring NO follow-up for 100% of their living donors. There cannot be a more blatant expression of how little these people care about the fate of their living donors. Worse, this UNOS/OPTN policy went into effect in 2006 yet not a single transplant center has been punished, penalized, chastized, warned or otherwise for this behavior. I say this not just based on my disdain of OPTN or their history of overlooking such egregious slights, but because they proudly issued a press release a short time ago stating that for the 'first time' they've notified transplant centers of the 'importance' of complying with the follow-up policy. These transplant programs have given the double-middle finger to the Department of Health and Human Services who oversees the US transplant system, and more so, to the taxpaying general public who allows them to exist. A toothless letter from an agency that sucks from their teet is hardly going to make anyone tremble in their expensive, designer shoes.
Tuttle-Newhall, J., Krishnan, S., Levy, M., McBride, V., Orlowski, J., & Sung, R. (2009). Organ Donation and Utilization in the United States: 1998-2007 American Journal of Transplantation, 9 (4p2), 879-893 DOI: 10.1111/j.1600-6143.2009.02565.x
Thursday, May 06, 2010
NY wants 'presumed' consent for organ donation
http://roomfordebate.blogs.nytimes.com/2010/05/02/should-laws-encourage-organ-donation/
The current US system is opt-in, meaning that everyone is assumed NOT to be an organ donor unless they specifically stipulate they wish to be. This directive can be vetoed by the family/next-of-kin. NY has introduced a bill to create an opt-out approach, meaning that everyone in NY is assumed TO BE an organ donor unless they say otherwise. Families will no longer have veto power.
The four opinion pieces aren't that illuminating, and one avoids the question completely to harp endlessly on her only goal, paid LIVING donors. But the comments say a lot about where Americans' heads are at regarding organ donation.
1. The current organ transplant system is flawed.
Very much so. Currently about 1/3 of names on the wait list are 'inactive', meaning the individuals cannot have a transplant even if an organ does become available. Also, over the majority of 'deaths' reported on the wait list are those 'inactives', meaning that not only is the shortage problem overreported, so are the deaths due to the shortage.
Also, as Steve Jobs demonstrated, would-be recipients can 'multiple list', meaning they can register in different hospitals throughout the country in order to increase their chances of receiving an organ. Not only is this the difference between buying one raffle ticket and ten, it also spotlights the problem of 'geographical hording', where hospitals offer procured organs to their patients first, then the larger region and then finally the whole nation, creating different wait times across the country for needed organs.
Let's also not forget that transplants aren't cures, so a certain percentage of people on the wait list have already been through at least one transplant. Their lives have already been 'saved' at least once, yet they are given the same priority as everyone else.
2. Hospitals will let me die if I'm an organ donor.
Despite the plethora of urban legends afoot, I simply don't believe this to be true. However, there is much debate about the definition of 'death' due to the fragile nature of organs and the short time they can be harvested.
3. People without insurance can't GET transplants, so why should they be encouraged to GIVE organs?
There was a study I read recently that cooroborated that very statement, essentially saying that uninsured folks were much more likely TO BE organ donors than they were to be the beneficiary of donated organs. It's a flaw in the US healthcare system that some folks aren't willing to overlook, and I can't say that I blame them.
4. Everyone else makes money from organ transplants, so why not the donors?
My understanding is that the procurement hospital really doesn't profit from the situation, but the surgeons and center where the transplant takes place does make big bank. However, that being said - where would this 'compensation' come from? The government - proponents of small government or fiscal responsibility would find many issues with this. The recipient's insurance company - that's only going to happen if we legislate it and premiums are guaranteed to rise. Secondly, compenation of any sort immediately runs the risk of coercion. Libertarians may argue autonomy, but clearly they've never been put in a desperate position.
5. One commenter, a former OPO employee, insists presumed consent is a bad idea because families are not told the truth about what happens to the donor or the donated organs. He cites profits as well as general treatment and otherwise distasteful topics. Obviously I can't comment on the specifics because I'm not an expert in that area, but based on my experience as a living donor, I have no problem accepting that families are only given half the story. After all, living donors aren't told the truth about their risks, and they have to live the rest of their lives with the reprecussions; why the hell would the hospital dispense any information that might make a family deny the donation?
My opinion on this specific bill is unresolved due to lack of information and context. However, I am a firm believer in maximizing deceased donation in lieu of the medical industry's recent crunch to expand the living donor pool. Other countries have seen great success with presumed consent, but they have also invested in their organ donation and procurement systems, which the US has so far failed to do. There's also the issue of their 'universal health care' which eliminates all discussion of outstanding medical bills and financial responsibility. The medical personnel in those countries are not blinded by profit, making it far easier to focus on ethical behavior and quality control instead.
The current US system is opt-in, meaning that everyone is assumed NOT to be an organ donor unless they specifically stipulate they wish to be. This directive can be vetoed by the family/next-of-kin. NY has introduced a bill to create an opt-out approach, meaning that everyone in NY is assumed TO BE an organ donor unless they say otherwise. Families will no longer have veto power.
The four opinion pieces aren't that illuminating, and one avoids the question completely to harp endlessly on her only goal, paid LIVING donors. But the comments say a lot about where Americans' heads are at regarding organ donation.
1. The current organ transplant system is flawed.
Very much so. Currently about 1/3 of names on the wait list are 'inactive', meaning the individuals cannot have a transplant even if an organ does become available. Also, over the majority of 'deaths' reported on the wait list are those 'inactives', meaning that not only is the shortage problem overreported, so are the deaths due to the shortage.
Also, as Steve Jobs demonstrated, would-be recipients can 'multiple list', meaning they can register in different hospitals throughout the country in order to increase their chances of receiving an organ. Not only is this the difference between buying one raffle ticket and ten, it also spotlights the problem of 'geographical hording', where hospitals offer procured organs to their patients first, then the larger region and then finally the whole nation, creating different wait times across the country for needed organs.
Let's also not forget that transplants aren't cures, so a certain percentage of people on the wait list have already been through at least one transplant. Their lives have already been 'saved' at least once, yet they are given the same priority as everyone else.
2. Hospitals will let me die if I'm an organ donor.
Despite the plethora of urban legends afoot, I simply don't believe this to be true. However, there is much debate about the definition of 'death' due to the fragile nature of organs and the short time they can be harvested.
3. People without insurance can't GET transplants, so why should they be encouraged to GIVE organs?
There was a study I read recently that cooroborated that very statement, essentially saying that uninsured folks were much more likely TO BE organ donors than they were to be the beneficiary of donated organs. It's a flaw in the US healthcare system that some folks aren't willing to overlook, and I can't say that I blame them.
4. Everyone else makes money from organ transplants, so why not the donors?
My understanding is that the procurement hospital really doesn't profit from the situation, but the surgeons and center where the transplant takes place does make big bank. However, that being said - where would this 'compensation' come from? The government - proponents of small government or fiscal responsibility would find many issues with this. The recipient's insurance company - that's only going to happen if we legislate it and premiums are guaranteed to rise. Secondly, compenation of any sort immediately runs the risk of coercion. Libertarians may argue autonomy, but clearly they've never been put in a desperate position.
5. One commenter, a former OPO employee, insists presumed consent is a bad idea because families are not told the truth about what happens to the donor or the donated organs. He cites profits as well as general treatment and otherwise distasteful topics. Obviously I can't comment on the specifics because I'm not an expert in that area, but based on my experience as a living donor, I have no problem accepting that families are only given half the story. After all, living donors aren't told the truth about their risks, and they have to live the rest of their lives with the reprecussions; why the hell would the hospital dispense any information that might make a family deny the donation?
My opinion on this specific bill is unresolved due to lack of information and context. However, I am a firm believer in maximizing deceased donation in lieu of the medical industry's recent crunch to expand the living donor pool. Other countries have seen great success with presumed consent, but they have also invested in their organ donation and procurement systems, which the US has so far failed to do. There's also the issue of their 'universal health care' which eliminates all discussion of outstanding medical bills and financial responsibility. The medical personnel in those countries are not blinded by profit, making it far easier to focus on ethical behavior and quality control instead.
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