Re: Pat

[Guest guest]

Good morning all:

I know I am very lucky and I even ask myself in a little guilty way why me?

especially when I read the posts of so many people just as, or more deserving

then I for my gift of life. I talk to my donor spiritually and promise to

care for his Christmas gift and together (yes I have a new partner in life my

new liver) we will do what ever we can to advance knowledge in this area and

advocate for more resources to be allocated to fight this epidemic.

I am CEO of a Behavioral Health Care Organization in Connecticut and our

centers are involved in the NIDA clinical trial network. I am well positioned to

be heard!

I feel I may have gone through all of this as a spiritual process to become

a better human being and increase my passion to assist others in the battle

against Hep C.

Merry Christmas/ Happy Holidays to all and I pray for all of you to be

strong, positive, and determined in your individual battles " believe me I

understand! "

[Guest guest]

I was only on the list for three days! I had stage 4 cirrhosis and had HCC

the HCC was zapped and my MELT score went up to 27 or so. I am a AB and the

donor was an AB. I went on the list on a Wednesday and that Friday night I

received a call to come down to Presbyterian in NYC. I got there around 3 AM and

had been told they would be removing the donated liver in Miami at 2 am and

wanted to do the procedure early Sat morning 10 Am or so. I got a little scared

but it was more of a weird situation not expecting a call then 8 hours

latter being prepared for surgery. I was wheeled in the OR and they team

quickly

put me under, the next thing I know was a doctor face close to mine saying it

is all over and you did fine. I was actually taken from intensive care unit

and put on the transplant recovery floor later that night.

I had a morphine pump and was encouraged to use it for pain. The only pain

I really felt was changing position or getting in and out of bed, stomach

muscles were real tender. I had one slight issue with rejection but med changes

quickly addressed that. I went home after 7 days. I was up walking and getting

exercise since the second day after surgery.

All liver tests went to normal range then in about 3 weeks began to rise

Builituben total rose to 15, ALT and ast moved up into the 400s. I was

readmitted to Columbia as they were concerned about the tests and did not know

if it

was rejection or Hep C coming on strong. After biopsies and testing it was

determined that it eas the Hep C so they gave me small doses of interferon and

Ribaviron. The numbers on the tests began to slowly come down. as of last

Monday Total Bilirubin was down to 1.90 ast 103 and alt 166.

I can tell you I was more scared in the hospital during this week then

during the transplant itself. At one time Dr Brown one of the heads of the

program

came in and patted my knee and said you are beginning to worry me! that was

comforting.

I am off to a conference in Washington DC Sunday to participate in a NIDA

Clinical Trial network conference. I got my Hep C as a kid sharing needles

around 1967 or so. I am node CEO of Ct Renaissance a Behavioral Health Care

program in Ct. I am trying to do allot of patient and community education around

Hep C. I do a radio show and I have the docs who are working with me to come

and do a show with me as a case example. So I am upbeat I maintain a good sense

of humor and am taking this head on without seeking out pity or feeling

sorry for myself, everyone deals with these things differently and I always

have

been a survivor and am continuing in that vein.

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[Guest guest]

It is frustrating but the Hep C is Blood Bourn and stays in your system

after the transplant. This is the big challenge the face now with Hep C

transplants. Columbia in NYC is in the process of conducting a multi site

clinical

trial using interferon with the rejection med's. What they are doing with me is

the same as the study.

I got results back a little while ago and the alt went up from 166 to 199

and the AST up from 103 to 135 however Bilirubin id down from1.90 to 1.60. I am

going away for a week and when I get back the Doc wants another biopsy he has

been concerned from the beginning that we do not mistake Hep C for rejection

or visa versa

So we will see. I am going to forget about this stuff for a week and enjoy

Washington

Pat

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[Guest guest]

That's an awesome story Pat! I'm glad you are doing so well and fighting to keep

it that way. I am always amazed when I read stories like yours and how strong

people are when they have to face life's challenges such as this.

MaC

pat500@... wrote: I was only on the list

for three days! I had stage 4 cirrhosis and had HCC

the HCC was zapped and my MELT score went up to 27 or so. I am a AB and the

donor was an AB. I went on the list on a Wednesday and that Friday night I

received a call to come down to Presbyterian in NYC. I got there around 3 AM

and

had been told they would be removing the donated liver in Miami at 2 am and

wanted to do the procedure early Sat morning 10 Am or so. I got a little scared

but it was more of a weird situation not expecting a call then 8 hours

latter being prepared for surgery. I was wheeled in the OR and they team

quickly

put me under, the next thing I know was a doctor face close to mine saying it

is all over and you did fine. I was actually taken from intensive care unit

and put on the transplant recovery floor later that night.

I had a morphine pump and was encouraged to use it for pain. The only pain

I really felt was changing position or getting in and out of bed, stomach

muscles were real tender. I had one slight issue with rejection but med changes

quickly addressed that. I went home after 7 days. I was up walking and getting

exercise since the second day after surgery.

All liver tests went to normal range then in about 3 weeks began to rise

Builituben total rose to 15, ALT and ast moved up into the 400s. I was

readmitted to Columbia as they were concerned about the tests and did not know

if it

was rejection or Hep C coming on strong. After biopsies and testing it was

determined that it eas the Hep C so they gave me small doses of interferon and

Ribaviron. The numbers on the tests began to slowly come down. as of last

Monday Total Bilirubin was down to 1.90 ast 103 and alt 166.

I can tell you I was more scared in the hospital during this week then

during the transplant itself. At one time Dr Brown one of the heads of the

program

came in and patted my knee and said you are beginning to worry me! that was

comforting.

I am off to a conference in Washington DC Sunday to participate in a NIDA

Clinical Trial network conference. I got my Hep C as a kid sharing needles

around 1967 or so. I am node CEO of Ct Renaissance a Behavioral Health Care

program in Ct. I am trying to do allot of patient and community education

around

Hep C. I do a radio show and I have the docs who are working with me to come

and do a show with me as a case example. So I am upbeat I maintain a good

sense

of humor and am taking this head on without seeking out pity or feeling

sorry for myself, everyone deals with these things differently and I always

have

been a survivor and am continuing in that vein.

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[Guest guest]

I feel for your husband that kind of biopsy does not sound like fun!! I have

had about 4-5 liver biopsies and have not found them to be real

uncomfortable but they do use numbing med's before sticking in the " big needle "

Thanks for your kind words

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