Posted on 02/21/2005 10:28:06 AM PST by LarkNeelie
His case had been reviewed, the letter said. ``In addition, we have reviewed your personal Web site.''The American Society of Transplant Surgeons and LifeLink are ``strongly opposed to the solicitation of organs or organ donors by recipients or their agents through Web sites,'' the letter continued.
``After careful deliberation, we will not consider any living donor for you.''
Crionas was stunned by the decision.
``I was dumbfounded ... I'm, like, are you serious?''
The LifeLink letter said he could be put back on the national list to wait for a ``deceased'' kidney of someone who had made provisions to be an organ donor upon death. But Crionas, now 28, fears that wait might be as long as five to 10 years, due to factors such as his age and blood type.
Most of the 87,000 people on national waiting lists for organ transplants are waiting for kidneys.
Web Sites And Billboards
Like Crionas, hundreds of others seeking organ transplants have decided to quit relying solely on the nation's organ distribution system to find them hearts, lungs and kidneys.
They have set up Web sites and bought advertising space on billboards to make direct pleas for organ donors.
The system - put in place through the 1984 National Organ Transplant Act - may not be ready for them.
In November, after the first kidney transplant involving people who met through a Web site, www.Ma tchingDonors.com, the transplant surgeons' society issued a statement against personal or commercial Web sites that solicit organs.
The surgeons group urged centers not to accept patients who found living donors through Web sites.
(Excerpt) Read more at info.mgnetwork.com ...
Perhaps each captured and convicted terrorist should be required to donate two kidneys, one heart and two lungs in exchange for freedom.
Thats not quite how it works. the transplant center evaluates the recipient, if the person is a drunk and there is a possibility that this person will continue he/she is downgraded and often passed over. Then the organ has to be a match (blood type, etc.) My daughter went through a liver xplant at the age on 11, this was on Easter Sunday. She is now 22 and a thriving, beautiful girl who just got her pilots license and does flight attending on the side. Also if this person cna't get his kidney in Tampa there are dozens of other centers who I am sure would take him in a minute. We went to Univ of Nebraska (live in Tampa area) because we thought they had the best docs for her situation. Please reconsider and put your name on the donor list. I thnk God every day for the donor who saved my baby.
Hemo (HD): In the USA, with three (instead of UK/European four) treatments a week, the fluid "swings" are much bigger, thereby increasing the need for a "harder pull" at the HD unit because of fluid buildup between treatments; that puts a strain on the heart (esp. in the elderly) and the peripheral circulation (we concluded leads to the amputations we were seeing -- even of fingertips in small women...)...as well as the kidneys themselves from dehydration (further decreasing residual function, RRF). The most "successful" younger patient we're aware of has to fib to the technicians at the unit to keep them from pulling him too hard: he is doing well on his residual renal function, fluid swings, weights and blood pressures even with a failed kidney transplant (with pancreatic tissue transplant) by using a careful supplement program (some of which defies what the medical experts say), including material he has learned from the book Sugars That Heal. Another issue is the way your AV shunt gets treated by any given technician; they're expensive ($30k each), damaged easily and you can run out of sites. They become kind of ugly and gnarled after a while, as well. BTW, an AV shunt is an anastomosis between an artery and a vein in your forearm -- kind of unnatural, and certainly more so than a tube coming from your intraperitoneal space. AND preventing systemic infections are under YOUR direct control when you are on home PD. And let's not forget sudden cardiac arrest in the chair (we saw plenty of those in only five months) and aluminum contamination of your system from the dialysate. Best of all, the constant tug-of-war with an ignorant tech who would rather put saline solution back into your system AFTER pulling you too hard: that makes sense...
PD: Your protein allowance is not only generous, but can be problematic (esp. for the elderly) to keep on top of; too many infections too close together can jeopardize your longevity on PD (but YOU have the control); night-cycling alarms can make for loss of sleep (but for younger people this should not be a problem: you simply learn how to avoid them); the time commitment is greater but you have more flexibility in your schedule. The BIGGEST benefit we have found is keeping control of your situation instead of trusting undertrained, obnoxious, haughty techs who sometimes don't even speak your language in units that in the past have hired junkies right off the streets (an infamous scandal that has been since addressed). I could go on and on in that vein and will privately if requested. In short, you take almost full control of optimizing all aspects of your medical picture based on your labs and kinetics testing instead of giving over control blindly to a stupid tech who has more pull with the doctor and the system at any given critical point than you do. And if your blood pressure should get too high between treatments (on HD), for whatever reason, well, that's no biggie: you will likely just have to wait it out until the next scheduled session. Don't you love it?
Perhaps best of all with PD: the docs and the system make less money all the way around. Let's hear it for that one!!! (We don't call them vampires in this household for nothing.) We DO like our doc, a young woman who is open to working with us on our approach to various issues that can't be ignored but respond better to some alternative approaches than otherwise.
Bump for later read.
See what I mean? Get into the mindset of knowing as much or more as the people you're dealing with, right up to department heads, or you're not going to make out as well as you should; I guarantee it. (Not being bossy here: this is the best advice I can give you.)
Having good staff to work with is important, and I hope if we ever have to go back on HD it will be in a smaller community for the above reasons; but there are other intrinsic factors that make PD better. It is absolutely less convenient from some standpoints and don't let anyone tell you otherwise, but it IS healthier in terms of longevity and we learned that from the internet (where we've learned a whole bunch of other good things they never told us). God bless you (and don't wait for them to look out for your best interests -- learn everything you can about dialysis vs. nutrition, US vs. European approaches, etc.)
I can't understand why anyone would refuse to donate organs, other than a specific religious belief that forbids it. What use does anyone have for them after they're dead?
OTOH, I understand that doctors are sometimes (often?) hesitant to bring the topic up with the family of a dying or deceased person.
FWIW, I signed mine and have made it clear to my family that I want my organs donated. They may not be in the best of shape given the abuse my body has taken, but people who need organs aren't usually too picky.
And who knows? In this crazy world, I suppose anything is possible.
I would accept that amount for both of YOUR kidneys. :-)
When we start selling our organs we will have sold our soles.
I remember a particular Twilight Zone where Joan Crawford (a wealthy person) bought eyes from some poor guy that needed the money. She would only be able to see for a certain number of hours but she still wanted them and cared little for the guy who contributed them. She had all her beautiful things put around her, it was evening and they removed the bandages and immediately the power went out. All she saw before going blind again was the sun rise. But the guy who gave the eyes was now blind for life.
If you are truly "giving" who are you to judge?
Mickey Mantel???
Most people's families are willing, with previous consent by the person whose life hangs in the balance, to follow their wishes: their wishes can even be put into a document other than something that hands the decision outright to the medical establishment via the "donor card," unless I'm mistaken. Why would there be such a thing as a "donor card" anyway? It seems to me it's just like the "motor voter" law -- a bum's rush approach that makes it convenient for the medical establishment to "grab" what they want when they want it. Granted (hopefully), most physicians will be sensitive to the family's wishes, but the donor card carries a lot of weight -- kind of like the weight Terri Schiavo's husband is wielding with his claim that Terri allegedly stated she "didn't want to `live like that'" -- interestingly, she is NOT vegetative as is being claimed, and probably she DID indicate that distinction -- haven't we all? -- but notice how the definition of "vegetative" has gotten twisted: who WOULDN'T want to NOT be kept alive in a true vegetative state? So we just change the definition of "vegetative" and -- with her "prior consent" -- we've got what we want. I don't know that this is what has happened in her case, but it sounds like it. The absolutely BIGGEST LIE in Terri's case may be how she came to be in that state, arguably (doubts have been case in her husband's direction); but, otherwise, without question the biggest lie is her state being described as "vegetative." Terri is no different than a lot of people with severe physical impairment (and sometimes mental) dating from birth injuries, who are subsequently managed and sometimes improve as Terri's parents wish to do with her over the course of a reasonable lifetime.
For myself, I will never sign a pre-condition donor card; I will put my wishes into the hands and control of my family (who have never stirred up any suspicions as to their character) verbally or via a document other than a donor card; they have an actual interest in me as an individual. Anything else is worse than naive, IMHO. I will certainly self-define "vegetative" so the medical establishment can't monkey with what I mean.
I wonder if Terri signed a donor card?
With the cover excuses of controlling quality and the ethics of organ donation, it is unconscionable that this person should be put on the cadaver list JUST for exploring other options, especially if he was unaware of the politics involved. This is "playing God" and is just one more version of playing God that I fault the medical establishment for. Candidly, I think there are more ethical attorneys, head for head, than ethical physicians/surgeons. Sorry, but that's my humble opinion, and I've been an inside observer of both callings/professions.
The person who has been put on the cadaver list needs to get a good attorney; that should be abundantly easier, in both senses of the word "good," than finding a good doctor.
Most people's families are willing, with previous consent by the person whose life hangs in the balance, to follow their wishes: their wishes can even be put into a document other than something that hands the decision outright to the medical establishment via the "donor card," unless I'm mistaken. Why would there be such a thing as a "donor card" anyway? It seems to me it's just like the "motor voter" law -- a bum's rush approach that makes it convenient for the medical establishment to "grab" what they want when they want it. Granted (hopefully), most physicians will be sensitive to the family's wishes, but the donor card carries a lot of weight -- kind of like the weight Terri Schiavo's husband is wielding with his claim that Terri allegedly stated she "didn't want to `live like that'" -- interestingly, she is NOT vegetative as is being claimed, and probably she DID indicate that distinction -- haven't we all? -- but notice how the definition of "vegetative" has gotten twisted: who WOULDN'T want to NOT be kept alive in a true vegetative state? So we just change the definition of "vegetative" and -- with her "prior consent" -- we've got what we want. I don't know that this is what has happened in her case, but it sounds like it. The absolutely BIGGEST LIE in Terri's case may be how she came to be in that state, arguably (doubts have been case in her husband's direction); but, otherwise, without question the biggest lie is her state being described as "vegetative." Terri is no different than a lot of people with severe physical impairment (and sometimes mental) dating from birth injuries, who are subsequently managed and sometimes improve as Terri's parents wish to do with her over the course of a reasonable lifetime.
For myself, I will never sign a pre-condition donor card; I will put my wishes into the hands and control of my family (who have never stirred up any suspicions as to their character) verbally or via a document other than a donor card; they have an actual interest in me as an individual. Anything else is worse than naive, IMHO. I will certainly self-define "vegetative" so the medical establishment can't monkey with what I mean.
I wonder if Terri signed a donor card?
With the cover excuses of controlling quality and the ethics of organ donation, it is unconscionable that this person should be put on the cadaver list JUST for exploring other options, especially if he was unaware of the politics involved. This is "playing God" and is just one more version of playing God that I fault the medical establishment for. Candidly, I think there are more ethical attorneys, head for head, than ethical physicians/surgeons. Sorry, but that's my humble opinion, and I've been an inside observer of both callings/professions.
The person who has been put on the cadaver list needs to get a good attorney; that should be abundantly easier, in both senses of the word "good," than finding a good doctor.
Administrator, please remove the extra copy; I'm a newbie.
Definitely.
Of course, if you can imagine a reasonable person who would sell for $100,000, that means there are probably people with healthy kidneys who would sell for $10,000.
Others aren't so lucky, I surely do admit that.
What I can't wrap my brain around is providing nourishment and hydration is being touted as 'extraordinary' efforts to keep someone alive! But that hasn't anything to do with the issue of organ donation. :)
Another subject where society and ethics hasn't caught up to medical advances.
And it could be that as I get older and closer to naturally croaking, the price will get cheaper.....
No. There is pain and suffering on the part of the donor, as well as lost time, as well as lost kidney. They will be financially compensated for all that.
Sorry I didn't make a clearer connection between the organ donation and someone not wanting to be kept alive in a persistent vegetative state; it is that in both cases an actual decision or a supposed decision by the patient is being used as a determinant of their ultimate destiny when wielded by "disinterested" parties who actually have an agenda of their own. In both cases, someone other than the patient has been mandated to make a decision that the patient might arguably disagree with if they were more cognizant or more truly represented by their caring family. (It is arguable whether Michael Schiavo can seriously be considered in that category, and I wish the legal issue regarding Terri could more realistically include that aspect.) I see the two issues as parallel in that both are presuming or interpreting wishes of the patient without due process if contested by interested parties.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.