Re: money&transplants

[Guest guest]

Hi Barbara Ann,

As a transplant recipient, you're certainly more of an expert than I could

hope to be (unless I someday have a transplant, which is not my goal in life.)

I've also understood that transplant centers function within UNOS

guidelines, but UNOS allows for some discretional latitude, from everything

I've read on the subject. I admit, I haven't done as much research as I'd

have done if I was still listed. And, unfortunately, I didn't save any of

the really relevant points. However, it's (to my understanding) more or

less the way it used to be when dialysis treatment had to be allocated

because of a shortage of equipment. Not everyone would be eligible and

decisions had to be made about who was best qualified. There's where

subjectivity can and probably does enter the picture.

When I was being evaluated I had to meet with board members from the

transplant center and I also was seen by a large number of medical

specialists. It was obvious why I was interviewed by the psychiatrist and

psychologist, but more subtle when I met with members of the transplant

committee. Even the different physicians asked questions not entirely

medical related. I have my records and was (whew!) relieved to read their

comments that I was a good candidate for transplant. Some of those

comments were undeniably based on their perception of my mental health,

state of mind and family support.

So, if medically I had been within the guidelines but they felt I didn't

have the determination to survive a transplant or maybe didn't care one way

or the other whether I lived or died (even if it was the result of feeling

terribly sick) I do think that I would have been ruled out for

transplant. They also seemed very concerned about whether I would stick to

the medical regimen that post-transplant care would entail. I can imagine

that they would be cautious about giving an organ to someone who would just

bag it after a couple of years of medical hassle, and stop taking meds and

keeping appointments. But, identifying these people MUST be done

subjectively. There's no other way.

Economic considerations? I don't know. It would be interesting to see a

graph showing the average income of transplant recipients and also

statistics on how many people with few if any financial resources like

decent insurance, get transplants. Has such a study been done? It's not

just the cost of transplant that enters into the picture. A candidate

isn't going to even get that far without some kind of financial

support. If you're poor and live in the middle of Wyoming on a ranch, for

example, who is going to foot the bill to even get started on a transplant

evaluation? But that's something we can only speculate about.

Honestly, if my condition took a turn tomorrow, I don't know where I'd

stand. I'm not that young. I have no children at home, I'm not working

and my insurance deeply discounts their Preferred Providers. If I

happened to die from lack of a liver in time, who would challenge the

reason my name didn't reach the top of the list soon enough? Who would

even have access to that kind of information, and if they did, would they

bother to analyze it? All I can do is hope that there might be a pot of

gold at the end of my rainbow.

<<You made a statement about UNOS 'protecting' patients who are listed, but

not those who aren't. I've read that particular statement in publications a

hundred

times, I know what it means, but I'm curious as to what that statement

means to you? >>

What this means to me is that none of us know how many people have never

been evaluated for transplant in the first place, nor do any of us know how

many of us are like Susie, who was told she cannot be a candidate because

of her suicide attempts. We only know about Susie because she posted

here. Theoretical example: I get sick and my LV doctors decide that I have

end-stage liver disease. I don't respond well to meds, so my future relies

on a transplant. However, who keeps track of people like " me " who go in

for evaluation and are told " you didn't qualify as a candidate because of

xxx or xxx medical condition in addition to liver disease. " It shocked me

to be told that I would be taken off the candidate list if I didn't get rid

of our cats (but the clinic Social Worker told me he would deal with that

problem, meaning the doctor who told me that would be persuaded, I

hope); a transplant will not be given to a smoker (and I agreed that if it

looks like a transplant is inevitable, I'll certainly stop smoking); if I

didn't agree to an angiogram, a procedure that I happen to think is very

dangerous, I would not be eligible for a transplant (I already had been

informed that if it weren't for my transplant status, I wouldn't have been

asked to have one). Hard telling how many other veiled threats might have

been hanging over my head if I lived closer to the transplant center. And,

I agree, those are all valid reasons to claim I'm less viable for

transplant, but I have to comment that it's easy enough to simply deny cat

ownership and claim I don't smoke anymore. The angiogram is another issue

and only if a totally objective third opinion entered the picture would I

agree to one. But, you see what I mean. Are those three issues all listed

in UNOS as being reasons to deny transplants?

About family support, Scripps didn't request, they told me that I

absolutely had to have a support person with me during the transplant

evaluation, and it was a toss-up between my husband or one of our sons

taking a week off work and living in a San Diego hotel at our own

expense. Bob managed to sneak away to go back to his office for a couple

of days and I was asked EVERY DAY where my husband was and why he wasn't

with me. Fortunately he made enough appearances to convince them that

someone loves me. This does make sense, of course. A transplant recipient

surely wouldn't be able to drive or bus back and forth to the clinic during

the days immediately following hospital release. Nor could they prepare

their own meals, make their own beds or much else. I don't see this as an

entirely emotional criteria. It's actually reasonable and realistic.

I don't for a minute suspect that decisions are based on physical

appeal. The mentor Scripps assigned to me gave me a graphic rundown of her

fellow post-transplant recipients.

Baylor is a university hospital and is better funded than a private

organization like Scripps. Or at least, differently funded (I think

Scripps, in fact, is VERY well funded and happens to have a strong

philanthropic history.) To get government funding, as you know, a certain

percentage of gratis or highly discounted medical procedures must be

performed. Everyone (medical institutions) hates Medicare but no one can

do without it. To be Medicare approved, hospitals MUST take a percentage

of people with limited funds. And, they have to accept what Medicare will

pay, which isn't that much. But, what happens when the hospital has met

it's annual quota?

In a way, I'm being devil's advocate. It's probably not the greatest

system now in place, but it's the best we have available and everyone wants

it to get better, so it will. However, if we don't know the facts and we

become complacent, believing there will always be a happy ending, we won't

work to make things better. When I was growing up and would tell my Mom

that I'd done my " best " , she never hesitated to tell me that I was going to

have to do " better " if that was the way she saw things. Strangely enough,

that always did make me try harder.

I think that we see things the same but from different

perspectives. You've had much more " human " and first hand experience with

transplant recipients and you know the procedures better than I do. But we

can't afford to allow ourselves believe that this is as good as it gets,

can we?

Take care,

Geri

[Guest guest]

Hi Barbara Ann,

Many years ago when dialysis was new, Life Magazine did a feature on the

medical dilemma doctors faced, deciding who would be able to go on dialysis

and who wouldn't. It impressed and depressed me. I could never be

involved in those kinds of life and death decisions. It did leave me with

some curiosity if there are residuals of that decision making process

involved in today's organ allocations.

My Dad died in Oregon in 1980. I had no idea that he had offered to be an

organ donor, but weeks after he died, I found information in his personal

effects that showed that he not only had offered to be an organ donor, but

that the doctor who did the Death Certificate must have known it. The way

I knew this was that Dad had a medallion that he wore around his neck that

told who to contact if he died, for harvest of his organs as useable and

needed. I know why he did this. He didn't want his children to have the

burden of his funeral expenses. Long story, but if you'd known my Dad

you'd understand.

My roundabout point is that there are undoubtedly many people who are

willing to be donors but they do not make it easy to do. They give you a

card to carry in your wallet when you get your driver's license in

Nevada. The card isn't filled out and there's no guarantee that anyone

will see that card. What if a person dies in surgery and their wallet is

at home? No records are kept, it's just a little slip of paper that a

licensee may or may not fill out and carry around. I have legal software

on my computer and I could put it in my list of " requests " but no way of

knowing if anyone will read the documents while organs are still

viable. So, the problem isn't just donors, the problem is that there is

not a system in place that identifies donors and keeps track of

them. Isn't it still discretionary, whether or not a hospital will

approach family members after a death and request organs? There have been

many deaths in my family during the past few years, including my brother

who was a very healthy 46 year old when he died, and no one asked his

family if his organs could be donated. In fact, his widow undoubtedly

would have agreed, but it was the last thing on her mind. She would have

had to be asked. His death was on a US Military Base (The Presidio), with

Letterman Hospital only minutes away.

I was also asked if I could be relied on to take the meds. At the time, I

couldn't imagine not taking them. He was inquiring about the meds I've

been taking to avoid a transplant, and I assume that following a transplant

it would be even more imperative.

Anyhow, I don't think that doctors " plot " . I do think that they evaluate

based on success potential. It only makes sense. I felt like the bottom

had fallen out of my life when I was taken off the transplant list due to

remission. The transplant doctor called me and assured me that if my

condition were to change suddenly, I WOULD get a liver. But, I'm not on

the list and I do have stage IV cirrhosis unless there's been

regeneration. Absent a biopsy, who knows? However, cirrhosis always shows

up on my CT scans. I really don't know what I might be able to expect if

the bottom were to fall out again in a couple of weeks. When I was first

evaluated, I was told I'd have an approximate wait of two years. That was

22 months ago. Fortunately, I took up my bed and walked.

I think that comparing transplant centers and UNOS is comparing apples and

oranges. The centers are not all alike though they must have basic

standards of compliance, but it's the human factor that can cause

problems. Someone (who doesn't post here but who used to " lurk " ) had a

very negative experience at a transplant center I'm very familiar

with. She was threatened with having transplantation withheld if she

didn't comply with a number of different things pre-transplant. She has

since had a transplant at another transplant center who did not place the

same demands on her. The demands she mentioned must have seemed reasonable

to the first center, but the second, also highly respected, did not make

the same demands. Of course, this is all third hand so I don't know if it

was really how things happened. She did, however, offer to connect me with

others who had the same experiences with the same (first) transplant center.

I know I must sound negative, and that's not really my intention. For me,

it's important to know the potential hazards before I run into them. I'd

rather be wrong than not prepared for eventualities. It would be easier to

be more trusting, but as you've mentioned, a certain number of liver

transplant candidates die every year for lack of a liver. Can we assume

that only those who were facing death within days have had

transplants? And, that's an honest question. Is that how it now works? I

say that while I'm aware that demographics are very important when it

comes to the likelihood of getting a transplant in time.

It's all very complex and exhausting to contemplate. How do I feel? If I

had little hope of getting a liver in time, I'd want to know out

front. Can I expect that to happen if it comes down to it? Can

anyone? The doctor who first treated me seemed to believe there was no

chance I'd get a liver in time.

I think that all of those who are facing the possibility of needing a liver

transplant must educate ourselves, by reading all of the responsible

information available on the subject, whether positive or negative. I'm

still trying to get a handle on how to deal with the side effects of the

anti-rejection meds. Hopefully, the rest of the information will never

become vital to me.

Take care,

Geri