I've long been a strong advocate of encouraging people to sign on as organ donors. Personally, I signed the form and put the pink dot on my very first California driver's license at the age of 16. I've been a blood donor for decades and am on the National Marrow Registry.
What struck me this morning was this: Those people whom we'd most like to sign on for the various tissue donor programs (that is, the relatively young and the relatively healthy) are also those people who are least likely to have adequate insurance coverage and therefore most likely to be denied the very lifesaving treatments that they enable.
Meanwhile, simply by virtue of economics and simple good fortune, others benefit even though they themselves may have long refused to participate as a donor and/or created their own need by lifestyle choices.
Already the wealthy have an advantage regarding organ transplantation because they can sign up on every regional list (not to mention internationally) with the expectation that their wealth permits them to be anywhere in the country within 6-8 hours.
It's hard for me to look at my uninsured nephews and encourage them to be tissue donors knowing that they would be denied a transplant for the inability to pay for it.
Having a husband intimately involved in the transplant selection process, I can say this kind of a thing is either an urban legend, a simple attempt at comfort on the Drs part, or plain old black market. Did the doctor mean that if a donor was available and he was truly in need/a match then he would be at the top of the transplant list? Or did he really mean if the uncle needed a heart he would stop at nothing short of homicide?
It's a disservice to EVERY donor and recipient in need to perpetuate such myths. Such statements convince people that the donor system is corrupt and biased, so it's okay to defer donation. But the cold hard truth is many, many, MANY more people die waiting for that one shining last minute hope than those that in theory live on through urban legend stories.
The doctor meant that when/if my uncle wanted a heart, a heart he would get.
Specializes in Peds, Psych, Medical Home Case Manager.
I signed on as a donor from when it first became available to do so with my driver's license. My personal irony is that I ended up RECEIVING a kidney 3 years ago (Polycystic Kidney Disease).
I find it hard to believe that insurance status determines whether you can get on a list to receive an organ. Should you become ill with a catastrophic illness and need an organ, yet don't have insurance, you more than likely would get Medicaid.
As for not being able to list at multiple centers, I was listed at only one-the one my insurance would cover that was "in network". I knew of people that list at multiple centers, but it's not necessary.
Nobody but the workers for the organ procurement centers really know the exact "formula" for figuring who gets an organ or not, but generally, if it's a heart, lung, or liver, your clinical status is the most heavily weighed factor. For a kidney, it's time on the list and possibly how many antigens are a match (although with the new immunosuppressive regimens, that's less of a factor).
The process does not seem to favor wealth (possible exception-Steve Jobs), and seems as fair as possible. I waited almost 3 years, but I live in a more rural area-urban areas typically have a much longer wait.
Specializes in Peds, Psych, Medical Home Case Manager.
Jeff,
How come you didn't go into transplant nursing? Also, do you get sick a lot from being a nurse?
I also have a hereditary peripheral neuopathy (Charcot Marie Tooth), and my feet wouldn't withstand shifts working on a transplant floor (earlier in my career I worked in the hospital and just sucked up the pain). I did consider a position as a Transplant Coordinator, but I recently took a position as a Case Manager, which I love.
As for getting sick, I worked in a Peds clinic before and after my transplant. I must be REALLY good at handwashing, because I've rarely been sick since my transplant in May 2008, and am CMV negative.
I had "tolerogenic immunosuppression". The only steroids I had were 2 half-gram doses of IV solu medrol right after. I also had Campath intraoperatively, which wipes out (temporarily) B cells, thus allowing for minimum steroids. Maybe the fact that I'm not on Prednisone has minimized infections?
I currently have BK virus, which is a virus dormant in the urinary tract that sometimes reactivates. It's fairly well controlled on Leflunomide, and my creatinine has been rock stable, so hopefully the damage is minimal (haven't had any biopsies). Don't feel bad if you've never heard of it, because I never did before I had my transplant. Even my PCP had never heard of it. Fortunately, my transplant center is awesome, and they screen for it routinely (more and more centers are starting to screen for it, but very few were when I had my transplant). BK probably has led to many people in the past losing transplanted kidneys. Docs intuitively gave massive steroid doses in the past when creatinine went up. If BK was responsible for the rise, this only caused it to proliferate and ruin the kidney. It's amazing how much has happened in the transplant field in just the past 5-10 years.
Bella'sMyBaby
340 Posts
The doctor meant that when/if my uncle wanted a heart, a heart he would get.
No myth/urban legend.
Money buys alot.
Yes, it is sad that MANY people die waiting.....