Re: Lung Transplant Eligibility

[Guest guest]

Patty,

I am not a doctor, but have read a million things on lung tx and CF.

To be eligible for lung tx, you have to pass many physical tests and if you

have some major health issue, they may turn you down. But, usually there is

another tx center that will be willing to do you, because they are more

expereinced.

Here are a couple of ideas. I know a few CFers who had a liver tx, and their

lungs were fine. They had the livere tx, and low and behold their lungs

improved and years later they still do not need lungs... so my question

is...once

you get the liver fixed, does it take away the need for lungs? Maybe the fact

it is working at full power makes you healthier and your lungs do better? I

have no clue. Also the other thought is that there are people who have lung

and liver tx at the same time. I know one just occurred here in the states

yesterday. In fact I will put the article below.

I guess just cross that bridge when you need to cross it. Who knows what the

future will bring in way of CF therapies and transplantation.

Joanne

13-year old first in state to receive double lung-liver transplant

By JEANNIE KEVER

Copyright 2004 Houston ChroncileIt was almost 11:30 Sunday night, and

Carol McGowen was struggling to get her 13-year-old son to bed. The

holidays were over, and it was time to get back to normal. Whatever that

was. There had been nothing normal about the past 8 1/2 months, when

McGowen and her son, Chase, moved to Houston to save Chase's life. Their

wait ended Monday. Chase, who has cystic fibrosis, became the first

person in Texas -- and one of fewer than 20 in the world -- to have a

double lung-liver transplant. He was in good condition Tuesday in the

intensive care unit at Texas Children's Hospital, feeling strong enough

to complain about the breathing tube lodged in his throat. There had been

three false alarms in the preceding months, when the transplant

coordinator had reported a possible match only to say later that it

hadn't worked. But from the beginning, this call was different. Chase and

McGowen were still awake, talking with McGowen's sister, Kim Zimmermann,

who had moved to Houston with them, and Zimmermann's husband, Mike, who

was visiting from town, when the phone rang about 11:25 p.m. " We

have it, " Jaymee , the liver transplant coordinator at Texas

Children's, told McGowen. " This is it. " McGowen called her husband, Tom,

who was back home in Austin with their daughters, Tara, 15, and Casey,

10. Within an hour, Tom McGowen and the girls were preparing to roar down

U.S. 290 toward Houston, and Chase was settling into a room at Texas

Children's Hospital with his mother and aunt. Reality was setting in. " It

definitely feels different, " Chase said, comparing the post-midnight

activity with the waiting and ultimate disappointment that had followed

the previous calls. He alternated between poring over the 2004 edition of

the Guinness World Records book -- the largest tumor, the fattest man --

and cracking jokes. " What's up with your hair, dude? " he asked as Dr.

Mallory, a pulmonologist and head of the lung transplant program

at Texas Children's, walked into the room. " It's a mess. " Mallory dished

back, and a nurse kept the pre-op medications flowing, even as testing

continued on the lungs and other organs. LifeGift, the organ procurement

agency in Houston, Fort Worth, Lubbock, Amarillo and surrounding

counties, would say only that the lungs and liver transplanted into Chase

-- along with three additional organs that went to three other people,

and tissue that will be transplanted in the future -- came from West

Texas. Tom McGowen and Pam Jacks, Carol McGowen's best friend for more

than 20 years, arrived from Austin about 4 a.m. after dropping the girls

off to stay with Mike Zimmermann. Less than 90 minutes later, Chase was

wheeled into surgery. Chase had been diagnosed at age 2 1/2 with cystic

fibrosis, a genetic disease that causes the lungs to clog with mucus,

making it hard to breathe, and damages other vital organs. At first, he

remained stable with medication and breathing therapy, but by 2002, he

was in bad shape. After a year of constantly collapsing lungs and several

near-fatal episodes, doctors in Austin last spring recommended a lung

transplant. The lung transplant program at Texas Children's Hospital was

new -- it started in July 2002, and Chase's was only the 10th transplant

performed there -- but the McGowens felt its shorter waiting list and

proximity to home made it the best choice. In addition, Tom McGowen's

parents, and Norleen McGowen, live in Pearland. Two months after

Chase arrived in Houston, doctors said his liver had been so badly

damaged by the cystic fibrosis that he needed a liver transplant as well.

Double lung-liver transplants are rare -- Chase's was the first in Texas,

and just 13 had been performed in the United States as of Oct. 31,

according to Anne Paschke of the United Network for Organ Sharing, which

oversees transplants around the country. Because so few have been done,

there are no statistics on success and survival rates, she said. About 80

percent of cystic fibrosis patients who have a lung transplant alone are

still alive one year after the surgery, according to the Organ

Procurement Transplant Network; that figure drops to 61.3 percent after

three years. Even getting a transplant is a long shot. More than 80,000

people are waiting for a transplant in the United States, and 17 of them

die every day. Monday, Chase got his shot. And his parents settled in for

a different sort of waiting. Dr. Dean McKenzie, a pediatric heart surgeon

who is the lead lung transplant surgeon at Texas Children's, began

separating Chase's diseased lungs from his chest walls even before the

new lungs had arrived by Lear jet at Hobby Airport, although he didn't

remove them completely until the new ones were in the operating room.

Just before 9:30 a.m., an ambulance pulled up to the emergency room,

lights flashing, and a surgeon jumped out and rushed the new lungs

upstairs. " This is surreal, " Zimmermann whispered as she watched Dr.

L.S. Morales whisk by on his way to the elevator. She and Jacks

ducked into the elevator with him, and then raced back into the waiting

room. " We rode up in the elevator with Chase's new lungs, " Zimmermann

told the McGowens. Dr. Goss, the lead liver transplant surgeon,

accompanied the new liver into the hospital less than an hour later. Goss

was among the doctors who had harvested the organs in West Texas, and he

personally delivered the liver he would transplant into Chase later that

day. Lungs must be implanted within a few hours of being removed, so

LifeGift sent them first. Goss had more time, both because the liver

remains viable for a longer window and because he couldn't start the

transplant until McKenzie had the lungs in and working. Just after noon,

Mallory walked into the waiting room. " Things are going well, really

well, " he said. The transplant won't solve Chase's medical problems,

merely change them. " Keep the faith, " Mallory told the McGowens. " The

good thing is, we're going to move on to a whole new set of issues and,

hopefully, much more solvable ones. " Shortly before 6 p.m., Goss walked

into the waiting room, his cool manner belying the drama of the moment.

" I think we're finished, at least for today, " he said, only briefly

alluding to the fact that, even for an experienced transplant surgeon,

doing a double lung-liver transplant is a rare opportunity. " I've never

done this before, so I don't know, but he seems to be fine. " Tuesday, as

Chase continued to do well, Goss said the multiple transplant required a

different type of incision but otherwise had little impact. It will

require doctors to coordinate his follow-up care to ensure that care for

one new organ doesn't negatively impact the other, he said. " He's doing

fine, " Goss said. " He's doing very well. " Monday evening, as Chase was

being moved to the intensive care unit, Carol McGowen took a deep breath.

" I can't thank you enough, " she told Goss. He smiled. " That's what we're

here for. "

> Hi to all...and a special note to Natalia...I am excited for you re

> lung transplant.I am not familiar with what is involved, must be

> lengthy process, but i think youre tough as ive mentioned before...so

> hang in there, sounds like help is on the way:):)

>

> My question is eligibility for lung transplant people.Is it true

> because my son has severe liver disease(which, i dont think its that

> bad but gi told me he'll probably eventually need a liver tx), that

> he would never be eligible for a lung tx?

>

> And what about vice versa?Having cf disqualifies him for liver tx

> because of lung difficulties, or " otherwise unhealthy " ?

>

>

> Do i even need to start worrying yet,lol?

> Probably not but little glimmer of hope left when i read something of

> that nature:(:(

>

> Patty, mom to ty 8wcf and 2 lil ones wocf

>

Joanne M. Schum

Cystic Fibrosis

Bi-lateral Lung Transplant Recipient

September 12, 1997

University of North Carolina Hospitals Chapel Hill

Residence: Upstate New York

email: luckylungsforjo@...

Manager of: Transplant Support - Lung, Heart/Lung, Heart

http://groups.msn.com/TransplantSupportLungHeartLungHeart

" Taking Flight - Inspirational Stories of Lung Transplantation "

Compiled by Joanne Schum

Authored by lung recipients around the world

http://www.trafford.com/robots/02-0497.html

http://www.trafford.com/