RE: No idea what to do!!Help

April 29, 2008

-----Original

Message-----

From:

[mailto: ] On

Behalf Of Chaim Boermeester

You

are the only one who can make a decision like this. The

mere fact that you are even considering to accept the offer from the doctors

seems to show that your QOL is down the drain and you are pretty desperate. I would go for the evaluation and go through the entire

process of being listed. The worst thing that can

happen is that when you get " the call " you decide against it (or not). I hope there will be people with more

" hands on " advise soon.

Ken and I have “hands

on” advise.

And Chaim is absolutely right! This is such a personal decision that

you have to be the one that makes it. I know you’re only looking for guidance

here, but on this question we just can’t walk in your shoes. You simply must do what you believe you need

to do.

Barb (Proud mom of Ken) in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

April 29, 2008

Chaim and Barb are correct in it being a personal decision. I can tell you this: My son was 7 when he was diagnosed with PSC. At that time, he had minimal symptoms. He was listed, then, for a double lung transplant due to pulmonary fibrosis. He received that transplant 2 weeks after his 8th birthday. Once we reached the 6 month mark from his lung transplant, they listed him for his liver. His numbers were okay, though his entire left lobe was cirrhotic and his right lobe wasn't much better. From the time of his diagnosis in October of 05 through the next 18 months, had a total of 15 ERCP's to place stents in his liver, and one EGD to remove the final set. We had to do it on a set schedule because if he kept the stents for as long as 3 weeks, they clogged up and he had cholangitis. Once we reached about 6 months after diagnosis (maybe a little more

or less, I don't remember now), 's QOL went drastically downhill because of his liver. Between the ERCP's, his constant itching, fatigue, weight loss, constant vomitting and diarrhea, and the fact that his liver was so big it had caused gastroporesis so he stopped even digesting what little food he DID eat, I had no problem listing him. That little boy was miserable and had no life outside of the hospital or his bed at "home" ( Mc House, 2 1.2 hours from home). I don't think letting the docs list you for QOL reasons is a horrible thing. If there is someone whose liver is worse than yours and is failing, they will give it to that person, so if you're concerned that you would be keeping someone else from getting one who needs it more, I don't think that's a problem. And, as the others said, you always have the option of turning it down if you get the call and don't feel that you're ready. I

think it's better to be on the list in case something DOES come and you are sick to death of being sick, so you at least have the option of doing something about it. Also, if it comes down to a choice between two people who are equally in need of a particular liver, the one with the most time on the list will be offered it first. And if your liver has begun declining faster, you may want that. With , his liver itself was doing okay. One day, out of the blue it seemed, he went into hepatorenal failure and landed in the PICU on dialysis for 2 weeks with his liver numbers climbing, also. He finally got his liver. That was 9 months ago. Today we've been home for 7 months, he's been back in school for 6 months. is riding his 4-wheeler again, going to phy ed class, and rejoicing at the fact that he can now play outside, eat what he wants and DIGEST IT, drink milk, be HOME,

not itch every second of the day. Poor QOL may not lead to death, but sometimes a person wishes it would. That's my opinion. AmiTerri Haarburger wrote: Hi all:) Hope everyone is well. I hvan't written for a while, but always reading the emails. Has anyone had a transplant more on the basis of quality of life then liver failure? Well thats what my dicision is about at the moment. My quality of life over the last year has deteriorated horribly. Vomitting most days, lossing weight all the time, major fatigue and the worst being Continual pain.I am a full time student, and battling to pass with all these symptoms. At the moment I am, but it is really taking it out of me.My actual cholangitis attacks are more regular then ever. The doctors are ready to put me on list for quality of life reasons. It not only quality of life though because my actual liver has deteriorated more in the last 5 months then it did in 6 years since diagnosis. Im

now in late stage 3. I know my liver would have to be a lot worse if I was to be transplanted for liver actually failing. But the Doctors taking both quality of life and liver deterioration are keen to put me on the list.. On the one hand I feel like I have no quality of life but on the ohter hand I don't know if it acceptable to go into an operation of this severity unless your liver is in complete liver failure and you have no choice. Please Any comments will be greatly appreciated. I think this email was bit all over the place, apologies just in a bit of a state. Love Terri(19) Diagnosed PSC 2002Send instant messages to your online friends http://uk.messenger.yahoo.com Ami - Migraines, FMSmom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfoxmom to Emma - 14 yrs - Migrainesstepmom to - 15 yrs - ADHD, ODD~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

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April 29, 2008

As everyone has said, this is a very personal decision. I was listed

for tx about 11 years ago -- I had the beeper and was very ill. At

first, being listed was frightening, but I soon came to realize that

being listed was great insurance. Hopefully, you'll never have to use

it (I still have my own liver), but it's great to have in case of

emergencies. You are very young and this is a daunting situation, but

-- this is only my opinion -- quality of life is a HUGE issue for a

young woman like you.

Penny

>

> Hi all:)

> Hope everyone is well. I hvan't written for a while, but always

reading the emails.

> Has anyone had a transplant more on the basis of quality of life

then liver failure?

April 29, 2008

As everyone has said, this is a very personal decision. I was listed

for tx about 11 years ago -- I had the beeper and was very ill. At

first, being listed was frightening, but I soon came to realize that

being listed was great insurance. Hopefully, you'll never have to use

it (I still have my own liver), but it's great to have in case of

emergencies. You are very young and this is a daunting situation, but

-- this is only my opinion -- quality of life is a HUGE issue for a

young woman like you.

Penny

>

> Hi all:)

> Hope everyone is well. I hvan't written for a while, but always

reading the emails.

> Has anyone had a transplant more on the basis of quality of life

then liver failure?

April 30, 2008

>

> The doctors are ready to put me on list for quality of life

reasons. It not only quality of life though because my actual liver

has deteriorated more in the last 5 months then it did in 6 years

since diagnosis.Â Im now in late stage 3. I know my liver would have

to be a lot worse if I was to be transplanted for liver actually

failing. But the Doctors taking both quality of life and liver

deterioration are keen to putÂ me on the list..

Hi Terri

I had hoped seeing we hadn't heard from you for a while that all was

well with you, but it seems not

Please consider that in our day to day activities that we very rarely

have anything to do with chronically ill people...(unless you go to a

PSC conference...grin) wheres Doctors deal with people with health

problems day after day. They would be looking at your medical

records, your psycholigical profile and would have made a descion to

suggest putting you on the list. They would have considered this

very carefully. Please put yourself in their hands, but keep asking

questions, its almost as if you have moved from the PSC arena to the

Liver Transplant arena which has a whole different set of rules.

I don't know your families dynamics, what are their thoughts on you

being on the transplant list?

Please do keep in touch and best wishes for your school studies, you

are doing so well.

from NZ in the same hemisphere as you.

April 30, 2008