Happy re-birthday!

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To Larry (and Nellie!) 11/23/06

from the archives of 2006:

From:

Sent: Friday, December 22, 2006 12:48 PM

To:

Subject: Re: blood type/wait

Hey Stuart,

Good question. I'm not sure how much blood type factors into waiting

time. However, I'm an AB+ blood type, and have had 2 transplants (the

first failed after about 8 months, and I got my second on Thanksgiving

day). I waited 8 days to get my first liver, and 5 days to get my

second. Of course, for my first transplant, my MELD was 22, and for

my second, it was in the high 20's (my bilirubin was 41.7). So, with

my MELD and my blood type, I was able to get a liver quick. Just a

personal story to help clarify and answer your question.

A very lucky and thankful PSC'er,

Larry Cohen

(Tx2 11/23/06, Tx1 2/15/06, PSC 10/04, UC 9/04)

Larry C got a transplant

Hello, all,

Maybe some of you remember us, though, it's been quite some time since

I've posted. Larry was diagnosed in Sept. 2004 with PSC and Oct. 2004

with UC. That year, we went to Birmingham for tx evaluation and Larry's

MELD was only 13.

Since then, we kind of just went on with life as though there was

nothing wrong. We bought a new house. We had a baby in Oct. 2005. We

just lived and Larry kept taking his Urso and Colazal.

Well, Larry's insurance changed when he got a new job, so we had to

change centers and ended up at Emory in Atlanta. Larry had his

evaluation there in December of '05 and his MELD was 17. By the time he

was actually listed, his MELD was 20. His bili was shooting up and he

was very jaundiced. He was officially listed on Feb. 7.

On Feb. 15, at 3 a.m., Larry's phone rang. I roused him from sleep and

reminded him that he now had to answer 3 a.m. phone calls. After an

"Oh, yeah" he got out of bed, picked up the phone and said, "It's

Emory."

After just 8 days on the list, an AB donor liver was available. We were

at the hospital by 5 a.m. At 10 a.m., they informed us that the liver

was a very good one and that the surgery was a go. Also, that Larry's

MELD had gone up to 22.

The procedure began at 1 p.m. The nurse called from the OR to update us

on the major status changes -- first incision made, old liver out, new

liver in, etc. At 6 p.m., Dr. Tom Heffron, our surgeon, arrived to

tell us that everything had gone extremely well. Larry had not needed

any blood (Dr. H said he usually gives around 5 units) and was

extubated in the OR (very rare). And, it turns out Larry needed the

transplant more than we even knew. His liver was in terrible shape and

his spleen was 3 times the normal size. After answering our questions

thoroughly and patiently, Dr. Heffron went home to get some sleep

before coming back at 10 p.m. to perform another AB transplant. He did

3 in 24 hours.

After 6 days, Larry came home. He was home for about a week when his

white count shot up. So, this week, he's back in the hospital, getting

IV antibiotics while they try to figure out why his white count won't

come down. He's scheduled for a CT today. Other than the white count,

his numbers look great. And he feels great. We went for a 30-minute

walk around Emory's campus yesterday and he now refuses to lie in the

hospital bed unless he's sleeping.

In any case, I'm sorry we haven't been very active in this group. Work

and baby have kept us very occupied.

But now that we've been through the transplant, I feel like I need to

make myself available to anyone else who might have questions about the

surgery. including spouses/loved ones/caregivers -- as that's the part

I know most intimately.

We have been very blessed and are thankful every day to the family who

chose to make the momentous decision to donate their loved one's organ

in their time of grief. Now, there is no doubt in my mind that Larry

will be able to see our daughter grow up and grow old with me.

Hope you're all doing well,

Nellie

wife of Larry, 33, PSC 9/04, UC 10/04, Tx 2/06