Re: Liver Transplant Info Please!

[Guest guest]

Hi Pamela,

After transplant you can gain your life. However life after transplant will be full of adjustments, medicine, blood work, Drs. appointments. And depending how healthy your husbands body is now besides the liver will make a difference. It is not easy but well worth the changes made. Your husband yes will be able to do most of what he is doing now. I have had my transplant for 2 years, for me has been difficult and long. I have heard from many people claim it can take up to a year or more to feel better. There are many emotional changes that go along with the trauma of transplant. I still have pain and will take drugs for pain probably the rest of my life. But all in all a person can overcome the whole ordeal. I am thrilled to be able to watch my grandbabies grow. I work part time for a television station. And I am working towards being just as active as before. It is something to look forward to. Keep the faith.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

> Hi Everybody,

> I'm new to the group. My husband has AIH and has been on the

transplant list

> @ NYU Medical center for 2 years.

>

Hello Pamela:

A transplant is an amazing gift and like all gifts it should be

treated with the upmost grattitude and respect. I received my gift

almost 10 years ago now (November 1991). My family saw a change in

me immediately - in fact they even commented on how much better I

looked while recovering in ICU only hours after the operation. Not

all patients respond so quickly but most do. As the President of the

local Liver Foundation Chapter I have a circle of friends who have

all received the gift of a liver transplant as well. One fellow

received his 6 months before me and the most recent recipient was

just this past Easter Sunday. The ones that are doing the best are

the ones that take their medication when they are supposed too. They

are the ones that get their flu vaccine and avoid situations that

could get them into trouble by exposing themselves to health risks

etc. In other words the people that use common sense and respect the

new opportunity that they have been given are the ones that go back

to perfectly normal lives. Those who don't usually pay the

consequences.

I will give you a quick summary of how it has changed my life. After

suffering with AIH for 11 years I could hardly function. I slept

almost 18 hours a day. I had little interest in life and was ready

for the worst. After my transplant I was able to go back to work

within 6 months (people go back quicker now). I went back to playing

hockey for excercise and now I play an average of 5 times per week.

I was able to live and love again and have a completely different

perspective on life than most people I know. I was confident enough

in my recovery and new found good health to get married and start a

family. Life has never been better or more full. And again, most

people who have received transplants and that don't just take in for

granted as being something that is owed to them by our

technologically advanced society, all feel pretty much the same way.

Life has never been so wonderful.

I wish you and your husband all the best and I will keep you in my

prayers. - ph

[Guest guest]

Hi Pamela,

My name is Barbara, I just rejoined the group and saw your

email. I had a liver transplant 12/94. I agree 100% with

everything ph said.

Especially********

" In other words the people that use common sense and

respect the new opportunity that they have been given are

the ones that go back to perfectly normal lives. "

You will find organ recipients who are doctors, lawyers,

scientists, teachers, programmers, etc. All working and

doing very well. We are all individuals from entirely

different backgrounds and experiences, so each of us reacts

differently.

For myself, the transplant has been a true blessing. I

have no fatigue whatsoever, no pain, sleep very well every

night, can eat whatever I want. The only medication I take

is Prograf for antirejection and a blood pressure pill due

to a side effect of Prograf. I do NOT take anti

depressants, sleeping pills, mood elevators, or whatever.

I try to walk 3 to 5 miles every day. I used to run but my

knees aren't what they used to be. If you want to get an

idea of the full scope of the results of transplantation do

a search on transplant olympics and read some of the

stories. Those folks are more active and in better shape

than most.

I hope your husband gets his gift of life very soon. My

prayers are with you. Please feel free to write to the

group or to me privately if I can answer any questions.

I'm sure you will be hearing from other recipients on this

list.

Barbara Ann

barbara99ann@...

__________________________________________________

[Guest guest]

I know that everyone is different, of course, however, what is the likelihood

that someone with AIH will also need a transplant. Doesn't the Prednisone stop

the effects of the antibody or the need for a transplant?

Toni (AIH 6/01 and pregnant )

>>> barbara99ann@... 08/24/01 03:57PM >>>

Hi Pamela,

My name is Barbara, I just rejoined the group and saw your

email. I had a liver transplant 12/94. I agree 100% with

everything ph said.

Especially********

" In other words the people that use common sense and

respect the new opportunity that they have been given are

the ones that go back to perfectly normal lives. "

You will find organ recipients who are doctors, lawyers,

scientists, teachers, programmers, etc. All working and

doing very well. We are all individuals from entirely

different backgrounds and experiences, so each of us reacts

differently.

For myself, the transplant has been a true blessing. I

have no fatigue whatsoever, no pain, sleep very well every

night, can eat whatever I want. The only medication I take

is Prograf for antirejection and a blood pressure pill due

to a side effect of Prograf. I do NOT take anti

depressants, sleeping pills, mood elevators, or whatever.

I try to walk 3 to 5 miles every day. I used to run but my

knees aren't what they used to be. If you want to get an

idea of the full scope of the results of transplantation do

a search on transplant olympics and read some of the

stories. Those folks are more active and in better shape

than most.

I hope your husband gets his gift of life very soon. My

prayers are with you. Please feel free to write to the

group or to me privately if I can answer any questions.

I'm sure you will be hearing from other recipients on this

list.

Barbara Ann

barbara99ann@...

__________________________________________________

[Guest guest]

> I know that everyone is different, of course, however, what is the

likelihood that someone with AIH will also need a transplant.

Doesn't

the Prednisone stop the effects of the antibody or the need for a

transplant?

>

> Toni (AIH 6/01 and pregnant )

Hi Toni, first of all CONGRATULATIONS! ! !

I think the number of AIHers who need a transplant is very, very

small. I don't have any numbers, but of all the people I know with

transplants, only a very few had AIH. I think early diagnosis and

treatment seems to be the key. I felt fine and had no symptoms until

I had 12% of my liver function. I think treatment was too late at

that point.

Don't even think about transplants. You have plenty of other things

to think about now, and you'll be too busy after your baby arrives.

Enjoy your pregnancy and the arrival of your baby.

Best wishes to you and your family.

Barbara Ann

AIH tx 12/94

[Guest guest]

flatcat9@a... wrote

" A study showed that liver transplants who go into the

process with high expectations and a " good attitude " have

poorer recovery rates than those who do not. The

researchers believe that those with depression and low

expectations don't push to do too much too early and

therefore recover better. "

Just to set the record straight.

This so called study was comprised of mere 55 people in

Austria.

The study focused on PERCEPTIONS of quality of life after

transplantation compared to EXECTATIONS prior to

transplant. It had nothing to do with actual recovery.

Survey results IMO: People who have low expectations in

life are more easily satisfied than those who reach for the

stars.

Barbara Ann

AIH tx 12/94

__________________________________________________

[Guest guest]

> Thanks, Barbara Ann. Before writing, I'd tried to find the

original to see

> if I was remembering correctly, but I couldn't track it down.

> Harper

Harper,

Thanks, I can find the article if you'd like to see it. Personally,

I thought it was very misleading and gave people strange ideas about

transplantation.

Barbara Ann

transplant 12/94

[Guest guest]

> ph,

> Tell me more about being president of the liver foundation. Is it

Hi Gayle,

Volunteering for the liver foundation is very rewarding. I've been

involved for almost 8 years now and I also do public speaking to

promote organ donation awareness. I believe I owe my community and

society as a whole, a great deal for giving me the opportunity to

live these additional 10 years. (Maybe in another posting I will

share the things I've learned about life since first being diagnosed

with AIH over 20 years ago.) Volunteering in general is very

rewarding and I encourage anyone who has the energy, to do it. None

of us truly have the time...but if it's important enough to us, we

make it.

As for the liver foundation I can't speak for other countries (I am

Canadian) but I am sure they are probably quite similar. We have a

National office and then chapters throughout the country. Local

chapters are volunteer boards with board members coming from all

walks of life. Not all have liver disease, but they do have an

interest in promoting research and education of liver diseases. The

boards have different committees established and each of the

committee chairs is responsible for recruiting a team of volunteers

to help them achieve their annual targets and objectives. For

example my board is comprised of the following committees: Media and

public relations; fundraising; education; communications; memorials

and support services. Each committee develops a plan with me,

outling what they would like to do in the year and then they go do

it. The board meets monthly to discuss progress in each area and to

offer support to any committee that may have encountered some

unexpected road blocks to meeting their goals. The key to it all is

remembering that it's meant to be both fun and rewarding so committee

chairs and members need to pick areas of interest to them. This is

most important so that they don't feel like they are doing a job.

Afterall, they are all volunteers!

My favorite area is the FUNdraising (note the emphasis on fun in the

word fundraising). Each year outside of the scope of the liver

foundation, and through the support of my family business, I host a

golf tournament with all proceeds going to the Canadian Liver

Foundation (CLF). This year we (the local CLF chapter)are working on

holding a beer tasting night with all proceeds going to the cause.

That's right...a beer tasting night. There are over 100 different

types of liver disease and only one is alcohol related. Yet,

everyone seems to think that if you have a liver disease you must

have a drinking problem. The CLF has nothing against the consumption

of alcohol so long as it is in moderation. So, in order to break

this stigma and to promote our point of view, what better way than

with a beer tasting night? Since this is something new to not only

our chapter but all chapters across the country, it will probably

take over a year to plan and more than 150 people to pull it

together. This type of project isn't for everyone, but I can hardly

wait!

Anyway, I'm rambling on here. As I said before, if you can,

volunteer for some good cause. You will feel a whole lot better

about yourself and just imagine how great our world would be if

everyone did it!

ph - trans Nov. 91