Re: Walter Payton - Liver Transplants

[Guest guest]

Hi Geri,

Forgive me people somehow I just don " t think there are too many rules like

they want us to believe for tansplants, what I saw my friend go through and

what she talks about now and she is very active with support groups, she also

talks to people all the time about transplants, she heads up blood drives as

well. I am very sorry Walter Payton died, when you are a transplant patient

yourself things like this scare the hell out of me. Some information I have

recieved is African American people just don " t donate because of sickle cell

anemia. I have alot of questions myself shouldn " t Walter have lived?

Gayle

[Guest guest]

Geri,

This whole discussion brings up many questions for me also. In February I

was in liver failure due to an esophogeal (sp?) bleed. I spent five days in

a coma as a result. After the hospital stay I went through the transplant

evaluation (also at the Cleveland Clinic - like Randy and Cheryl.) I was

told by the clinic that I had been added to the transplant list - at a very

low priority. I was given a pager (as is Ohio law) but told that until I

moved on the list (as a result of further blood work or any other life

threatening situations) I would not have to carry it. Dr. Mullen (a doctor

that I have put a lot of faith in in the last few months) then stated that it

ws his job to keep me at a low priority for as long as he could!!! Good news

for me.

He said that with an evaluation in place if an event like the internal

bleeding was to happen again I could be moved up the list rapidly if needed.

Now this Walter Peyton issue has me thinking. Am I listed on the UNOS

listing? Does anyone have a number that we can call to see if we are

actually listed ont he national list? What happens if I have another " spell "

and I am not listed.

All of these things really worry me and I think that not only I but we all

deserve answers!!!

Okay, I am off my soapbox. Thanks for listening.

Peace

[Guest guest]

I guess I should explain that I bounced back after the internal bleeding,

much to everyone's surprise and that it why I was put at a low priority on

the transplant list.

Sorry to be confusing

[Guest guest]

Hi Gayle,

Rules are like laws, in my opinion. They're drafted with the best

intentions and have the potential to do great good for mankind, but people

implement rules and laws and often bend and interpret them in ways that

were never intended. You see this everyday, where agencies like Social

Security, which is usually an excellent government agency (in my opinion,

one of the best) have individuals who subvert and distort the original

intent of the regulations, to the detriment of those who need help. I

don't know if our society will ever find a way to solve this problem. And,

I think it would be very naive for any of us to believe that there is an

agency or organization that exists that isn't subject to this " creative

interpretation. "

I am deeply disturbed at Walter Payton's death. It leaves me with many

questions about the liver transplant allocation. I don't think it was in

any way a racial thing. I would be horrified and outraged if there were a

suggestion of this possibility. I'm relatively certain that there is no

problem with trans-racial transplants, i.e., donor and recipient being two

different races. For that reason, it shouldn't matter if there are fewer

African American donors because of sickle cell anemia. Certainly, Walter

Payton wasn't limited to only receiving a transplant from his own

race? Anyhow, there is so much racial mix in our society today, how could

they figure out who's which race? (One of our grandson's is 50% African

American. Thus, is he Caucasian or African American?)

I've read that blood type can make a difference, however. Those with the

most common blood types are apt to have to wait longer because there is

more competition for those livers. If a donor has a rare blood type and

there are only a few transplant candidates with that blood type,

bingo! I've also read that it's not a bad idea to be listed at more than

one transplant center. However, not all transplant centers are equally

experienced and skilled, so I'd be a little cautious about that consideration.

What it all boils down to is how can it be possible for someone who has

only been ill for a very short time and becomes suddenly critical to get a

transplant when others who have been ill for months and longer end up dying

for lack of a liver? And, it's a fact, many people die every year for lack

of a liver. Were they in the right place (city) at the right time? There

must be logical explanations for this and I think right now we all are most

anxious to hear them.

Me? I'm about to pin my transplant center to the wall for some answers

about how they have handled my transplant candidacy. I suspect I'll be

scouting for a different center very soon.

Yes, it seems to me that if Walter was on the transplant list two weeks

ago, he should have lived. It has nothing to do with his celebrity. I

feel this way because he was visible and we know what happened to him. I'd

feel the same exactly (probably worse) if anyone in this group were to die

the same way. My feelings are based on his age and It frightens me that he

didn't survive. I'm not a praying person, but my heart is with his family

and friends right now.

Take care,

Geri

[Guest guest]

,

I thought I read somewhere that UNOS keeps an available list of candidates

but maybe I'm wrong. It might be difficult to get a confirmation because

of privacy laws, though I would think the information would be available to

the transplant candidate.

Last Friday Clinton signed something into law that says that doctors and

medical facilities cannot withhold a patient's files from them nor can they

give out the files without documented authorization from the patient. The

law has " teeth " in that there are large fines for violation. I knew I

wasn't listed after all because my insurance company told me that the

process hadn't been completed then finally the doctor admitted it. What's

more upsetting is that just a couple of weeks earlier he'd told me that I

was on the " list " but very low priority. The transplant coordinator at the

hospital had told me the same thing just prior to that. So, it turns out

that they'd outright lied to me. I'm concerned about why they did

this. I've worried ever since about what could happen if I took a sudden

downturn.

The whole issue was further confused when my insurance company called me

and told me that they were going to set me up with a pager and connect me

with the " Flight For Life " people because I'd have to fly from Las Vegas to

San Diego if a liver was there for me. The person who called me was

disturbed, he said, because that hadn't been done earlier. This of course

had me in a big uproar, wondering why after a year they were getting

concerned about the pager, etc. The same person told me that I should have

received written confirmation of my transplant eligibility and status from

someone or other and he didn't understand why it hadn't been sent

yet. That's what got me started asking questions and what led to the

knowledge that I'd never been listed in the first place.

I certainly don't want to have a transplant. In fact the concept terrifies

me. But, I also don't want to die because of blunders or other factors

that didn't have to exist. I managed to go from high priority to low

priority to, apparently, no priority in under two years. I hope that means

I'm very fortunate and not getting swept under the table somehow.

I'm not certain who to ask about all this. Transplantation seems to be a

very sensitive subject to many and I feel like I'm counting coins in the

temple if I dare to question the way things work. But, if I hadn't asked

questions I'd still be sitting here blissfully believing that I was moving

up on the waiting list because of the length of time I'd been listed.

>I was also told that I'd move up the list rapidly if my status

>changed. But, how could that happen? I wonder mainly because there are a

>thousand? thousands? of people who die every year because of lack of a

>donor organ. It's not like someone's holding my place in line.

If you have a doctor who's easy to talk to, ask him flat out if you're on

the UNOS list and what your status is. Anything you can find out, please

let me know. I KNOW I'm not on the list, but if that changes, you can bet

I'm going to check it out.

How are you doing now? You look great in your photo, but we all know how

little that can mean, darn it. (I don't even look great, but that's due

process for my age.)

Yes, I agree, we have an obligation to ask questions and to insist on

answers. Platitudes and reassurances aren't enough for me. If I would

worry about getting blunt answers and accurate information, think of how

I'll worry as I count the last days of my life, wondering if I'll make it

high enough on the list in time - should it ever come to that.

Take care,

Geri

[Guest guest]

Geri

Hi...The reason Walter Payton was taken off the list is because he developed

cancer of the bile ducts.....They (the news people) only say that it was

complications to a rare liver disease...

but I did hear on the sports channel about the cancer...

Ty was pretty upset when he heard....Had a lot of questions...Can tell his

mind was in over drive..

and my mind is not working at all ..I think...

My mom who lives with us and has had 2 strokes...had a problem last

night...had to call EMTs...She's in the hosp and will be heading out there

again soon...So things here have been pretty crazy..

Well everyone can say a little prayer for both my mom and Tyler...We go for

labs tomorrow..Hes been running a fever(on and off) for a couple of

days...Noticed yesterday that is urine is on the dark side...no pain

though....His band finals are friday night in Giant Stadium...The end of a

very successful season...Hoping he is ok and can get thru this...I am anxious

about his labs though..

Waiting for a call from my moms doctors and then take everything from

there......

Luanne Ty's mom

[Guest guest]

LuAnn,

My prayers are with you all....

[Guest guest]

Luanne,

What happened to Walter Payton must be very frightening to Tyler. Even

teens without medical problems can become very anxious about the

possibility they'll develop some terrible disease. My kids needed constant

reassurance that they were well, though none of them ever had a serious

condition - just normal kid stuff.

I have to say, you're getting 20 people's share of heartache and anxiety to

deal with. It can't be doing your own health any good. How is your Mom

doing now? We went through many similar problems with my Mom but she was

very stubborn and refused to live with us or anyone else except once when

she was very weak following surgery. I can't allow myself to remember

those final months. There has been too much family grief for me to

reconcile in my mind and I shut it out for my own self preservation. Your

mother is lucky to have you but who is looking after you?

How has Tyler been today (Tuesday)? Any better? No urgent call backs

after his labs? I hope he goes through the band finals feeling strong and

proud and most of all, feeling good.

One day at a time, Luanne. Take care and we're all thinking of you.

Geri