RE: Interesting Transplant Video presentation/ 4 stories

[Guest guest]

Now I see that two of our own are featured in one of the stories!!! :-)

A friend of mine that is the director of the Florida Public Health Institute just sent this to me and thought I would pass it along.

http://www.pittsburghlive.com/x/pittsburghtrib/news/s_556307.html

Jeff in FL

PSC 1989

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[Guest guest]

Thanks for posting this. Unfortunately (well not really) I'm on vacation and

can't pull up the article. Would some one mind giving me a brief description. I

would also be curious to know who are our 2 featured. Thanks

Joanne (mom of Todd)

Sent from my Verizon Wireless BlackBerry

Re: Interesting Transplant Video presentation/ 4 stories

Now I see that two of our own are featured in one of the stories!!!  :-)

 

In a message dated 3/9/2008 9:38:55 P.M. Eastern Daylight Time,

Jeffsullivan@... writes:

A friend of mine that is the director of the Florida Public Health Institute

just sent this to me and thought I would pass it along.

 

http://www.pittsbur

http://www.pittsburghlive.com/x/pittsburghtrib/news/s_556307.html>

ghlive.com/x/pittsburghtrib/news/s_556307.html

 

Jeff in FL

PSC 1989

 

 

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[Guest guest]

Joanne,

One of the articles discusses balancing the benefits of transplant against the risks and has a brief interview with one of our tireless advocates, Barb Henshaw, and her son Ken. The series also discusses the economic incentives of liver transplantation and how some of the busiest transplant programs make use of organs other regions have passed by to treat patients with lower MELDS. It sounds as though you have a greater chance of getting a "marginal" donor liver if you are transplanted at a low MELD. It further evaluates the point at which (MELD of approx. 15) the statistical benefit of surviving a year becomes greater with transplant than without. This has led to the Share 15 Policy which dictates that those with a score of 15 or higher get first crack at the liver. First chance at the liver is within the transplant center's local area. If no one takes it there, the liver is offered within a wider regional area that can include several neighboring states. I would say that the basic slant of the series is that there are a lot of transplants being done unnecessarily and what efforts are being made to address it. From my perspective what the series does not address that PSC'ers have the added burden of weighing the major risk of cholangiocarcinoma. Also, I think that PSC really is different animal than a lot of other liver diseases in that a great many of us can be relatively well, but are prone to bouts of cholangitis and pancreatitis so severe as to be life threatening in and of themselves. Anyway, it is a very interesting series with a lot of valuable information and I would encourage everyone to check it out.

Jeff

Thanks for posting this. Unfortunately (well not really) I'm on vacation and can't pull up the article. Would some one mind giving me a brief description. I would also be curious to know who are our 2 featured. Thanks Joanne (mom of Todd)Sent from my Verizon Wireless BlackBerry Re: Interesting Transplant Video presentation/ 4 storiesNow I see that two of our own are featured in one of the stories!!! :-) A friend of mine that is the director of the Florida Public Health Institute just sent this to me and thought I would pass it along. http://www.pittsbur <http://www.pittsburghlive.com/x/pittsburghtrib/news/s_556307.html> ghlive.com/x/pittsburghtrib/news/s_556307.html Jeff in FL PSC 1989 ----------------It's Tax Time! Get tips, forms and advice on AOL Money Finance. <http://money.aol.com/tax?NCID=aolprf00030000000001> ----------------It's Tax Time! Get tips, forms and advice on AOL Money Finance. <http://money.aol.com/tax?NCID=aolprf00030000000001>

[Guest guest]

Ken and I are pretty upset by the first part of this article and we

learned a very hard lesson to swallow.

One we hope others will learn by.

We will probably be featured either in today’s or tomorrow’s

paper (it’s a 3 part series.).

The reporter found us

by trolling through another support group I belong to. Oddly enough I almost never post in that

group and the one day I did, he wrote to me. He also found Ken’s caringbridge page with his e-mail address on it (I have

since removed it.) I asked this man

flat out, “it sounds like you have a preconceived notion that transplants

with low MELD scores are bad” and he assured me that wasn’t

true. If you read the article there

is no other conclusion to draw! He

also never mentioned he would be writing anything negative (marginal livers) about

transplants either.

Ken said in passing that he was going to Pitt for a liver and small

intestine, so I can’t hold that against the reporter, because Ken said it. But Baylor

hasn’t told us that, and they are still in discussions trying to decide Ken’s fate. Now I’m

worried that both Baylor & Pitt won’t be happy with the article (how

could they be anything else but unhappy?) and will look unfavorably at us.

A woman in another

group was also written about, she was very excited (like we were) about the

article BEFORE it came out. Yesterday

she wrote to the reporter, basically telling him off for all the errors he

printed about her and the direction he took the article. She’s worried she will lose her

disability, because of what he wrote.

He agreed to change the article, but it is already in print, so all he

could do, is change the on-line version.

Besides being in the newspaper, you know how easily things get passed

on-line as Jeff passed it from Florida. So thinking no one

outside of Pitt will see it just isn’t so.

Please folks, learn

from us. *IF* you speak to a reporter, make sure you

have in writing (and yes e-mail is a legal document) his promise to let you

read and approve what he writes about you – BEFORE - it goes to

print. We thought we were doing a

good thing, so far nothing positive we said has made it into the article and we’re

not sure what repercussions we’ll have to face. Please learn from our mistake.

Barb & Ken in Texas

[Guest guest]

What ever happened to the ethics in journalism?I guess the days of the impartial, accurate reporter are gone.It seems that today it is just all about what sells even if it isn't the truth.Do you think you could ask the editor of the paper to have another reporter do a better job?Thanks for trying Barb. Thanks to Ken too.LeeKen and I are pretty upset by the first part of this article and we learned a very hard lesson to swallow.  One we hope others will learn by.  We will probably be featured either in today’s or tomorrow’s paper (it’s a 3 part series.).  

[Guest guest]

I’m

really not sure he did anything wrong, except -mislead me- about the direction

the article was going.

Like I told Ken, it’s really all about “how” you present a

story. You can say 1 in 10 people

die or 9 in 10 live depending how you resent it.

It’s just not

the happy upbeat life saving we wanted it to be. It’s our own fault for not knowing

to ask to read his work and approve it before he published it.

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

Do you think you could ask the editor of the paper to have

another reporter do a better job?

[Guest guest]

Granted, none of this is exactly great PR for organ donation and

transplant.

But I think there is a crucial message here for everyone waiting for

transplant -- Wait as long as you can.

The key questions: What are my chances of dying within one year after

transplant? What are my chances of dying within that year without

transplant?

Pam

(mom to Quantell, 17, dx 1996, tx 2001, dx recurrance with AIH overlap

2006)

[Guest guest]

Barb-

I am so sorry -- as if you and Ken need anything else to worry about or be concerned with!

Not fair, nor right, which is why (and sorry to any journalists out there) it has made me nervous talking with them, on the few occasions I have in the past.

Again, sorry both of you have had to deal with this.

Joanne H

(, Ca)

Ken and I are pretty upset by the first part of this article and we learned a very hard lesson to swallow. Please folks, learn from us. *IF* you speak to a reporter, make sure you have in writing (and yes e-mail is a legal document) his promise to let you read and approve what he writes about you – BEFORE - it goes to print. We thought we were doing a good thing, so far nothing positive we said has made it into the article and we’re not sure what repercussions we’ll have to face. Please learn from our mistake.

Barb & Ken in Texas