Re: Article:Transplant hopeful heads for second opinion

September 16, 2004

I find this whole story and the group’s reaction

to it rather surprising.

Where are those folks who condemned Pat Summerall for

doing almost the same thing? Why

isn’t Conniffe on the receiving end of the same criticisms said about Pat?

Conniffe has the money to fly to Florida

when others may not, he is going to be listed at 2 different hospitals - yet no

one is complaining about him doing it. At least Summerall had an evaluation at the

tx hospital months before going back to FL for his transplant. This guy is going in raw, the center never

heard of him before. Conniffe (if

accepted) will be cutting in line of those already listed in FL. Doctor’s said his chances of

survival nil, yet everyone is silent on this man. Where are those who complained about

wasting a liver? Isn’t he doing

an end run around the system (like Todd’s billboard)? He went to the press, got his name &

picture in the news, isn’t taking no for an answer, and trying to get

around the rules of his local center.

Why is this man getting a free pass when Pat Summerall & Todd didn’t?

I’m surprised by the groups silence…..

Barb in Texas

---------------------

Last week, 49-year-old

Conniffe was turned down for a liver transplant

With no hard feelings, a South

Carolina man seeking a liver transplant flew home to

his family Tuesday before heading to ville,

Fla., for a second medical opinion.

September 16, 2004

>

> I find this whole story and the group's reaction to it rather

> surprising.

Along with recurrent Hepatitis C, Conniffe also has cancer once again

in his transplanted liver.

His daughter can no longer be his living donor so now he is being

listed for a cadaver liver.

I think the whole scenario is bizarre, the lawsuit, the threats.

Mr. Conniffe may very well get that transplant in Florida.

September 16, 2004

Is he being put at the top of the list? Why Florida? Did someone there

say they thought they could help him? Want to make sure I didn't miss

something, I saw the article on this group.

Re: Article:Transplant hopeful heads for second

opinion

>

> I find this whole story and the group's reaction to it rather

> surprising.

Along with recurrent Hepatitis C, Conniffe also has cancer once again

in his transplanted liver.

His daughter can no longer be his living donor so now he is being

listed for a cadaver liver.

I think the whole scenario is bizarre, the lawsuit, the threats.

Mr. Conniffe may very well get that transplant in Florida.

September 16, 2004

----Original Message-----

From: -Tinnell,

Is he being put at the top of the list?

We’ll see, don’t know yet. All we have to go by is the articles Andi’s been sending in.

Why Florida?

Because Florida has a

short wait “List”, so if you get listed there chances are you’ll

get a liver pretty fast. For example;

Transplant center “A”

has a list of 1000 people who need new livers, with only 100 of those listed at

a MELD 25 – if you are one of those 100 listed you’re going to have

to wait for those 99 to get their livers ahead of you and that is going to take

quite some time before you get the call.

Transplant center “B”

has only 50 people listed for new livers – only 10 with a MELD of 25.

So you would only have

to wait until those 9 get their livers before you’d get the call.

Easy to see why

someone in trouble would go to a center with a short list – like Florida.

HTH

Barb in Texas

September 16, 2004

That’s probably why we had trouble

here in Kentucky and had to go to Cincinnati…no one here would ever give

us figures of how many were ahead of Bobby on the “0 negative” list…

RE: Re:

Article:Transplant hopeful heads for second opinion

----Original Message-----

From: -Tinnell,

Is he being put at the top of the list?

We’ll

see, don’t know yet. All we have to go by is the articles Andi’s

been sending in.

Why Florida?

Because

Florida has a short wait “List”, so

if you get listed there chances are you’ll get a liver pretty fast. For

example;

Transplant

center “A” has a list of 1000 people who need new livers, with only

100 of those listed at a MELD 25 – if you are one of those 100 listed

you’re going to have to wait for those 99 to get their livers ahead of

you and that is going to take quite some time before you get the call.

Transplant

center “B” has only 50 people listed for new livers – only 10

with a MELD of 25.

So

you would only have to wait until those 9 get their livers before you’d

get the call.

Easy

to see why someone in trouble would go to a center with a short list –

like Florida.

HTH

Barb

in Texas

September 16, 2004

Barb,

I've been silent because I simply couldn't believe this...I don't

know what I want to say or even what I want to feel about this one. I

don't fault him for kicking, screaming, and doing everything possible

to live, but I do fault the doctors for not having a standard of care

that is the same across the country. Regardless of what the rules

are, they should be the same for everyone everywhere - multi-listed

or not. That's just my two cents...

Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed Ltx 2001, MELD 19

>

> I find this whole story and the group's reaction to it rather

> surprising.

>

September 18, 2004

Barb Henshaw wrote:

> Why is this man getting a free pass when Pat Summerall &

> Todd didn’t? I’m surprised by the groups silence…..

I moved this question to the top, and I'll try expand on my answer a bit

more below. First I'd like to note that I didn't personally follow the

Pat Sumerall situation very closely, and never criticized him.

As far as Todd and his billboard go, I do see a significant difference

in the two situations. Todd solicited a directed donation, which

essentially changed his transplant from a decision made based of medical

criteria to one based on advertising and PR. Conniffe, on the other

hand has simply switched (BTW he's not (I think) actually listed at two

centers... Nebraska declined to list him, so he went to Florida) from

one medical team to another hoping for a different enough situation (and

perhaps doctors with a different philosophy) to justify being listed.

Boy, that was convoluted sentence... read it without the stuff in

parentheses if it's too confusing!

Anyhow, more comments below...

> Doctor’s said his chances of survival nil, yet everyone

> is silent on this man. Where are those who complained about wasting a

> liver?

I didn't see anything about his chances of survival being nil (they said

" unlikely " , which is a different thing). I think in general the

rationale in this kind of situation is that, while some people with

cancer can get a transplant and survive, it decreases the chances of

success enough that most doctors decide to give the transplant to

someone who is more likely to survive. That's what the doctors at

Nebraska Med Ctr. decided when they declined to list him.

The question in this case is whether his chances of survival are good

enough (in the opinion of the doctors in Florida) to justify putting him

on the list. Their list is shorter than the Nebraska list, so it may be

that, in their opinion, the chances that he will deprive someone else of

a liver are small enough that his lower chance of survival doesn't

disqualify him from being listed. Or maybe they'll agree with the other

doctors and not list him. As long as they base their decision on the

medical facts and not on the publicity surrounding it then it's OK as

far as I'm concerned.

> Isn’t he doing an end run around the system (like Todd’s

> billboard)? He went to the press, got his name & picture in the news,

> isn’t taking no for an answer, and trying to get around the rules of his

> local center.

He's not violating their rules, just going somewhere where the situation

might be (but isn't necessarily) different.

In fact if this kind of situation is unfair it's because of the rules

that make it so that lists are different in different places. Wider

sharing of organs would help to even out this kind of inequity, but

there are also (in my opinion) some valid concerns about wider sharing.

I guess in the end, you've just got to admit that having access to

additional resources can get you an advantage in medical care, just as

it can in most other areas of life. Is it fair that people without

insurance and who don't have enough money get turned down cold by some

medical centers? Of course not. But our society seems to have accepted

this inequity, and unless we want to change our society (or at least our

healthcare system) in some pretty fundamental ways, that's how it's

going to stay.

For the time being, I don't think I can change these big things, but I

can decide that for my part I'm going to play by the rules, and not take

something that should have gone to someone else.

athan

September 18, 2004