RE: Is it worth it to have a transplant?

[Guest guest]

I have asked myself this same question, but maybe with a different

reason. I believe the suffering should come to an end. I've had health

problems all of my life and a transplant isn't going to change that. Due

to the work Jesus has done on the cross and I have accepted. when I die

I will go to heaven. Being apart of this list has educated me that there

is no getting rid of this disease (I was told about 10 years ago a

transplant would end this disease).

[Guest guest]

,

What makes you say this? A transplant will

get rid of PSC in 80% of the cases. Yes, there is recurrence in a small portion

of the transplanted, and yes, you will have to keep take medication for the

rest of your life, but you will HAVE a life. Your health will improve, you will

be able to do things you can't do now, some of us even take part in a triathlon,

one of us won an Olympic medal after transplant (please, please read the book

" to the edge and back " by Klug). Being a believer doesn't mean

you shouldn't try to live! What you are doing here is committing some form of

suicide in my humble opinion. I don't know how things work in Christianity, but

in Judaism you are obliged to do anything in your power to save your own life

and that of others. Our scripture says " Saving one life is as if you saved

the entire world " . What about all the good things in life you could be

missing out on? I think quite a few people on this forum will take offense to

what you wrote. I haven't had a transplant, and I hope I will never need one,

but when I do I will cross that bridge and I will fight to get to the other

side. If you give up before you start you will definitely not make it.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of spiritualrebith@...

Sent: Thursday, November 08, 2007

00:37

To:

Subject: RE: Is it

worth it to have a transplant?

I have asked myself this same question, but maybe with

a different

reason. I believe the suffering should come to an end. I've had health

problems all of my life and a transplant isn't going to change that. Due

to the work Jesus has done on the cross and I have accepted. when I die

I will go to heaven. Being apart of this list has educated me that there

is no getting rid of this disease (I was told about 10 years ago a

transplant would end this disease).

[Guest guest]

I agree , heaven looks better everyday. Does that mean we just give up, no. I guess I am just trying to figure out what the balance is for me.

RE: Is it worth it to have a transplant?

I have asked myself this same question, but maybe with a differentreason. I believe the suffering should come to an end. I've had healthproblems all of my life and a transplant isn't going to change that. Dueto the work Jesus has done on the cross and I have accepted. when I dieI will go to heaven. Being apart of this list has educated me that thereis no getting rid of this disease (I was told about 10 years ago atransplant would end this disease). __________________________________________________

[Guest guest]

wrote:

>

> I agree , heaven looks better everyday. Does that mean we just

> give up, no. I guess I am just trying to figure out what the balance

> is for me.

--------------------

Hi , and welcome to the group!

As soon as I read your earlier post, I knew I must reply, but I wanted

to wait a bit and let others speak first. My situation is a bit

different from the vast majority of those in the group; I am one of

the very few who is NOT on the transplant track!

When I was first diagnosed with PSC in 2001, it didn't even dawn on me

that transplant **IS** a decision. The dr. I had at the time didn't

get my reaction at all, just swept me right in that direction. He

informed us that I have this disease by breezing into the exam room,

announcing, " I want you in ton as quickly as possible to meet

with the transplant team! " Yes, it was that abrupt and knocked us

right off our feet, emotionally speaking.

After a couple of months I began to realize that I wasn't being

permitted any input in the process of what was happening. Then, I

realized that the course of treatment in any illness should be very

much in my hands. My husband (who is a Presbyterian minister) and I

spent quite some weeks researching the disease and the treatments,

listing pros and cons, and weighing our options as best we could. We

switched drs. and - working with him as a team - we made the decision

not to go for transplant.

Like , I've been sick for many, many years and feel great hope at

the thought of life in heaven. One of the more critical factors for

me is that I have a complete Pseudocholinesterase Deficiency and,

thus, cannot tolerate anesthesia (without which, transplant surgery

would be just a bit much!!). However, I can tell you that my decision

to forego transplant would have been the exact same decision without

that factor. Transplant wouldn't do a bit to alleviate my Crohn's

Disease (and, in fact, might well exacerbate it), or my asthma, my

spinal stenosis, my peripheral neuropathy, my severe carpal tunnel, or

my sleep apnea. I would still be struggling with all of those, plus

even more pills than I swallow now, and in addition we would have that

constant fear of recurrence, like the sword of Damocles hanging over

our heads. I'm sorry, but that's not the route for me!!!

I wholeheartedly believe in transplants and the good they can do (I'm

a volunteer for Donate Life South Carolina and also a member of their

Advisory Council). I stand ready to give all possible support and

encouragement to those who choose that route. But I also have the

right to choose the road less traveled. Since making that decision (6

years ago now!), I have had an unwavering, deep sense of absolute and

utter peace. This is the peace which I believe can come only from God

and which I believe is His affirmation that, in my case, this was the

right decision. Suicide? Not by a long shot, honey!!! One might

consider it suicide if I stopped all my meds (and I don't take Urso

anyway!), took up drinking and had a big ol' cheesecake for every

meal! That, IMHO, would be throwing away what God has given me. As

it is, I'm doing all I can, short of extreme measures, to care for

this body and fulfill my role as a child of God to the very best of my

ability. I'm willing to accept what I've been given in life, much as

did Job who was able to say, after losing everything, " The Lord giveth

and the Lord taketh away; blessed be the name of the Lord! "

Transplant is not for everybody, any more than college is right for

everybody, or marriage is right for everybody, or childbearing is

right for everybody. It is one of the most personal decisions you

will ever have to make. It's also one that others somehow feel they

have the right to question. They don't have that right. This is YOUR

decision!!!! If you feel at peace with your decision, then it's the

right decision for you.

My family and (more surprisingly, perhaps), my doctors are all

strongly supportive of my decision. And I have found that by being

willing to accept death at whatever time God chooses for me, I have

gained an appreciation for and enjoyment of life in the bargain!!

Life to me is rich!!!! Life is good!!!! Life is vivid and

unparalleled for me now. My perspective is very different now from my

earlier years (I'm 49, if you were wondering) and I am deeply grateful

for and blessed by this rare perspective. My drs. agree with us that

this unfathomable burst of " health " during this past year can be

chalked up exclusively to what we call " Prayer and medication! "

Four years ago we were told that my bile ducts probably wouldn't last

more than another 2 years. I firmly believe that my sense of peace

and enjoyment of life has been a major reason that I'm still alive

(and ... not just alive, but -- thanks to the Xifaxan -- doing better

than I had for the past 10 or 12 years at least).

In the book of Lamentations 3:19-24, we are reminded that in spite of

our suffering, indeed BECAUSE of our suffering, and

" Because of the Lord's great love we are not

consumed, for His compassions NEVER FAIL. They

are new every morning; great is Your faithfulness!

I say to myself, 'The Lord is my portion; therefore

I will wait for Him.' "

My life and my body are completely in God's hands, and I'm very happy

to have it so.

Kind Regards to All,

Carolyn B. in SC

[Guest guest]

>>> What about all the good

things in life you could be missing out on? I think quite a few people on this

forum will take offense to what you wrote. I haven't had a transplant, and I

hope I will never need one, but when I do I will cross that bridge and I will

fight to get to the other side. If you give up before you start you will

definitely not make it.

I waited a while to answer this question and every day I came

up with a different answer in my head.

I think most will agree that my son had more than his fair share of complications

with his 2 transplants. Plus, he’s

going to need a 3rd transplant.

Was it worth it? I

could list all the things he’s doing right now that he wouldn’t/couldn’t

be doing if he hadn’t had the transplants and the joy those things give

him. I could list all the plans he’s

making for the future. I could list

all the people who love him whose lives would have been forever changed if he

hadn’t had the transplants and passed away. I could make list after list, but it

wouldn’t matter.

Life is what YOU make of it.

Pure and simple. Some people

had terrible childhoods, yet rise to great levels. Some people are far, far sicker than any

one of us will ever be, yet live life to it’s fullest. Some people have horrible life circumstances,

yet find laughter everywhere. Life

is what YOU make it. That’s

why they call it: The Gift of Life.

HTH Barb in Texas

[Guest guest]

>

> Then, I

> realized that the course of treatment in any illness should be very

> much in my hands. My husband (who is a Presbyterian minister) and I

> spent quite some weeks researching the disease and the treatments,

> listing pros and cons, and weighing our options as best we could. We

> switched drs. and - working with him as a team - we made the decision

> not to go for transplant.

Hi Carolyn

Thanks so much for taking the time to put together a thoughtful reply.

My idea of a forum such as this, is where you can put forward your

ideas for others to consider.

Hopefully a transplant for me is way over the horizon, so I haven't

even given it a thought....yet

Carolyn over the time I have view this group you have given such

considered opinions that I thought you must be in your 50's or 60's

with years of life experiences packed in and I was taken aback to see

how young you are....blush.

Thanks again