RE: very interesting phone call -- long note to group

[Guest guest]

Penny,

THANK YOU for sharing your story. It is encouraging to those of

us that are still fairly new to the diagnosis. And I am so happy for you that

things in the liver department seem to be going good now. All my best to you

and your continued good liver health!

Rick

From:

[mailto: ] On Behalf

Of P R Weller

Sent: Friday, January 09, 2009 11:36 AM

To: PSC

Subject: very interesting phone call -- long note to group

My transplant coordinator called yesterday. She suggested

that I be taken off the inactive list and I told her that I would check with my

new GI on Monday when I see her.

The tx coordinator said that she had checked my labs from Oct. and

felt that I no longer needed to be listing since time on the list is no longer

a determining factor in getting a transplant. I agree, but will check

with my doctor.

For those of you who don't know me, I was evaluated for transplant

in the winter of 1997 -- shortly after my surprise diagnosis. In April of

1997, I crashed due to a nosocomial infection in my liver due to an ERCP.

It took two transplant surgeons seven hours to piece me back together, dealing

with abscesses inside and outside my liver and an eroded common bile

duct. I would have died if they hadn't acted so quickly. What followed

was being put on the fast track for a liver. I had the beeper, I was told

to wait for the call. I slowly improved, but had many hospitalizations

along the way. It was rare to go a few months without a trip to club

med. The ER staff used to meet me at the door with my ID bracelet.

If I wasn't home in the evening, my son called the ER -- it was that awful.

I have fibromyalgia so I asked all my doctors if I could take SAM-e

since it's supposed to help joint pain. They said that it wouldn't hurt my

liver and said that I could use it. About that time, I resisted invasive

procedures and slow, but steady improvement began. I did have an issue

with fungal " balls " -- peanut-sized masses in my liver from prolonged

use of high dose sulfa to combat the abscesses after the original drug,

gentamicin wreaked havoc on my inner ears and caused vestibular loss (loss of

balance). We used high dose Diflucan to get rid of the fungal masses and

reduced the sulfa dosage which I remain on to this day.

MRCPs initially showed improvement and the last one this fall

showed one minor area where there may be some disease progression. My

doctors seem unconcerned.

Fast forward to yesterday. I'm sending this to show that this

disease progresses differently in all of us.

I am grateful to have lived the last twelve years and to have had

the joy of holding my five grandchildren.

I just wish I could still play tennis!

Penny