Re: New member: a few Qs

[Guest guest]

Hi , welcome.

You seem to have a full plate with the loss of your brother and both

husband and niece sick. I hope in the midst of everything, you get to

keep up your strength.

I have only been a member of this group for only a few months and it

is my son , 18 who has both PSC and UC, diagnosed about 6 months ago.

The answers to some of your questions as I believe them to be are:

I believe his doctors will determine when he has to be listed

depending on what they see as to his liver's condition. I don't know

where you live but I know from reading and learning from some of the

members on this site that one is able to even be listed at more than

one place because some places have shorter lists than others. I think

your insurance company may have a say in this.

His itching will be related to his bilirubin levels. Some have it bad,

others itching they can cope with.

How long he can live post tx. With any surgery or ailment, people

recover differently because we are all physiologically different. A

reason why under the same conditions of environment, food, water,

drugs,etc, one still finds differences in results. Apart from some

who may have complications, I believe it is possible to live to a ripe

old age and die of other causes. Some people have the PSC re-occuring

some time after transplant but we all hope that does not occur. I

don't think the doctors can even predict if or when there may be a

re-occurance.

Again due to physiological differences and general health of the

patient, recovery time will vary. I have read of someone who was out

of hospital 4 days after a transplant and others taking weeks.

I haven't answered every question. I know there are others on this

site who will be able to answer those questions better eg brain fog

and also the rest of the questions you ask.

Rita

[Guest guest]

Dear ,

You ask some great questions and I know that many will answer you. In

the meantime check out our PSC Partners website for lots more

information.

www.pscpartners.org

Click on the past issues of our newsletters, our brochure and look at

our literature site.

There is a lot to take in so take your time.

Lee

> My husband is 40 and was diagnosed with PSC '94. Dr. says he is in

> early stage liver failure; diabetes, GGT hovers around 600 with some

> spikes to 1500, other indicators always just above " normal, " short

> term memory difficulties, bronchitis off/on since July'05. Also

> seeking colon biopsy to confirm UC or Crohn's. Under care now of

> hepatology clinic at University of Washington Medical Center.

>

> We have some apprehension about some of the unknowns:

> " how long until tx? "

> " how fast can the liver fail and need to be listed? "

> " when will the itching start and will we know related to PSC? "

> " how long will he live post-tx? "

> " will he be able to work as liver continues to fail? "

> " will this fatigue get worse or is it because he's 40 and works hard? "

> " is concentration and brain fog part of PSC? "

> " what is recovery time post-tx? "

[Guest guest]

Greetings ,

My younger 38 yr. old brother had PSC this time last year. He

received his transplant in June and is doing great now. Like you I

knew little about PSC and had many questions. We learned

quickly and got through it. Your prep work will pay off.

As for working my brother continued to work as he battled fatigue

and water retention for about 1.5 years. His health took a sharp

drop on a February morning and that was the end of working

until transplant and recovery were completed in September.

Your husband's MELD score and organ availability at your

hospital will determine when the tx happens. Couple docs told

me that PSC can progress unpredictably so it's hard to say how

fast it will deteriorate. Some states have more availability than

others so an option is to go where you can get the job done.

Your MELD number and blood type are all you need to get an

idea how many are ahead of you. The only certainty is that tx is

your only solution and organs are in short supply. Post-tx with no

problems he should live a full life expectancy.

After tx he was in the hospital for 9 days, had a few minor

problems that were resolved. Other patients were up and

walking some earlier within the week. The anti-rejection meds

took some to get used to but after a couple months improvement

really progressed. Some patients had other complications that

required stents and meds adjusted, but most recoveries that I

saw were problem free. It was hard work though for all of us and

well worth it.

Pre-tx turned out to be the most dangerous and difficult time. The

big three symptoms were water retention (ascites), internal

esophageal bleeding, and confusion-fogginess

(encephalothapy). Our family worked like firemen, watching for

and putting out fires while they were small. The bleeding was the

worst and landed us in Emergency in critical, watch out for black

stools. The confusion can be bizarre, many days when he did not

know his name or where he was. These symptoms can be

managed but you have to watch for them and stay in front of

them. He had other minor symptoms like the skin yellowing,

some itching, huge weight loss and fatigue, and cramping due

to diuretics. Probably varies a lot by person. The threat of cancer

developing was a serious concern, we did everything possible to

accelerate the process. Time is not on your side.

Very sorry to hear about your brother's passing. You are doing

the right thing now by preparing for what's ahead and can make

it through this. Our sister also died three years ago from MS. I

told my brother that he was going to have it make it cause I was

not going to be the last one.

Best wishes,

[Guest guest]

,

I do not have an answer to most of your questions, as PSC treats all of us in a different way and on an individual time table. What I can do is give you hope that things can get better.

I'm very sorry about your husbands brother passing away. Leukemia treatment is a terrible thing to go through, both for the patient and family. Our daughter got leukemia when she was 25 and we had quite a time of it, but, she came through it with a cure. She is now 36, happily married and a mother of a beautiful little girl, one yr old.

I recieved my new liver on Aug 2, 2002, from my wifes brother, after he committed suicide and we turned out to be a perfect match. I've had a few bumps in the road, but am healthier and more active than I had been for a long time.

Please take every day knowing that there is light at the end of the tunnel and in my opinion, ther really is a santa claus. Tim L

----- Original Message -----

From: tomalimattich

[Guest guest]

Rita,

Thank you for your note. I guess, given everything that has happened

with my brother and how long Tom has been ill, I just wish there were

finally some clear cut answers. In reality, I know there aren't and

it will be as individual to Tom as we each are. I appreciate your

input. Have been so hesitant to join a group for fear of

seeing/hearing things I/we weren't ready to hear yet but know that it

is something we can't hide from and must face with courage, faith and

strength.

Thanks again!

>

> Hi , welcome.

> You seem to have a full plate with the loss of your brother and both

> husband and niece sick. I hope in the midst of everything, you get

to

> keep up your strength.

>

> I have only been a member of this group for only a few months and it

> is my son , 18 who has both PSC and UC, diagnosed about 6 months

ago.

> The answers to some of your questions as I believe them to be are:

> I believe his doctors will determine when he has to be listed

> depending on what they see as to his liver's condition. I don't know

> where you live but I know from reading and learning from some of the

> members on this site that one is able to even be listed at more than

> one place because some places have shorter lists than others. I

think

> your insurance company may have a say in this.

> His itching will be related to his bilirubin levels. Some have it

bad,

> others itching they can cope with.

> How long he can live post tx. With any surgery or ailment, people

> recover differently because we are all physiologically different. A

> reason why under the same conditions of environment, food, water,

> drugs,etc, one still finds differences in results. Apart from some

> who may have complications, I believe it is possible to live to a

ripe

> old age and die of other causes. Some people have the PSC re-

occuring

> some time after transplant but we all hope that does not occur. I

> don't think the doctors can even predict if or when there may be a

> re-occurance.

> Again due to physiological differences and general health of the

> patient, recovery time will vary. I have read of someone who was

out

> of hospital 4 days after a transplant and others taking weeks.

> I haven't answered every question. I know there are others on this

> site who will be able to answer those questions better eg brain fog

> and also the rest of the questions you ask.

>

> Rita

>

[Guest guest]

,

Wow, what an incredible journey for your family and brother.

Inspiring that it is possible to get past some of what sounds like

very dark and difficult days. Like I learned with caring for my

brother these past years, somehow, and from some secret place, the

energy seems to find US when we need it the most and to do whatever

needs to be done. Right now I almost feel like we are being gifted a

reprieve to recharge before Tom's health declines. Plus, I also work

and we have 3 children (12 yo, 8 yo & special needs, and a 10 month

old). An odd blessing really. Your family sounds so strong.

I appreciate the specifics (am kind of a detail junkie) I always feel

a little more calm when I am prepared with facts and anything

concrete I can get my hands on. I usually fall apart after the fact,

when everyone is on the mend.

I have always worried about the post-tx piece as the research I have

seen shows 80% chance of 5 year survival then with LeDoux

(country singer) dying of bile duct cancer nearly 5 years exactly

post-tx for PSC. However, I am incredibly encouraged by the post

dates I see after everyone's names and the amount of years involved.

Many thanks again for sharing with me and I look forward to reading

everyone's input and researching the PSC site.

> Greetings ,

> My younger 38 yr. old brother had PSC this time last year. He

> received his transplant in June and is doing great now. Like you I

> knew little about PSC and had many questions. We learned

> quickly and got through it. Your prep work will pay off.

>

> As for working my brother continued to work as he battled fatigue

> and water retention for about 1.5 years. His health took a sharp

> drop on a February morning and that was the end of working

> until transplant and recovery were completed in September.

>

> Your husband's MELD score and organ availability at your

> hospital will determine when the tx happens. Couple docs told

> me that PSC can progress unpredictably so it's hard to say how

> fast it will deteriorate. Some states have more availability than

> others so an option is to go where you can get the job done.

> Your MELD number and blood type are all you need to get an

> idea how many are ahead of you. The only certainty is that tx is

> your only solution and organs are in short supply. Post-tx with no

> problems he should live a full life expectancy.

>

> After tx he was in the hospital for 9 days, had a few minor

> problems that were resolved. Other patients were up and

> walking some earlier within the week. The anti-rejection meds

> took some to get used to but after a couple months improvement

> really progressed. Some patients had other complications that

> required stents and meds adjusted, but most recoveries that I

> saw were problem free. It was hard work though for all of us and

> well worth it.

>

> Pre-tx turned out to be the most dangerous and difficult time. The

> big three symptoms were water retention (ascites), internal

> esophageal bleeding, and confusion-fogginess

> (encephalothapy). Our family worked like firemen, watching for

> and putting out fires while they were small. The bleeding was the

> worst and landed us in Emergency in critical, watch out for black

> stools. The confusion can be bizarre, many days when he did not

> know his name or where he was. These symptoms can be

> managed but you have to watch for them and stay in front of

> them. He had other minor symptoms like the skin yellowing,

> some itching, huge weight loss and fatigue, and cramping due

> to diuretics. Probably varies a lot by person. The threat of cancer

> developing was a serious concern, we did everything possible to

> accelerate the process. Time is not on your side.

>

> Very sorry to hear about your brother's passing. You are doing

> the right thing now by preparing for what's ahead and can make

> it through this. Our sister also died three years ago from MS. I

> told my brother that he was going to have it make it cause I was

> not going to be the last one.

>

> Best wishes,

>

>

[Guest guest]

Tim,

Your post made me smile - why is it we stop believing in Santa after

we find out he has helpers??

It was my brother who passed but he and my husband were best friends

for 18 years! We too are very encouraged by my nieces progress with

her leukemia treatments. She and her father (my brother) even took

some of the same chemo together. I still remember the two of them

bald as bowling balls, snuggling together in bed helping each other

gets through the side effects.

Would you mind sharing more about your story? Was it very sudden

when you knew things changed and your condition was deteriorating or

did you just regularly get your MELD re-verified and modified your

listing placement? What kind of timeframe?

Thank you again.

>

> ,

> I do not have an answer to most of your questions, as PSC

treats all of us in a different way and on an individual time table.

What I can do is give you hope that things can get better.

> I'm very sorry about your husbands brother passing away.

Leukemia treatment is a terrible thing to go through, both for the

patient and family. Our daughter got leukemia when she was 25 and

we had quite a time of it, but, she came through it with a cure. She

is now 36, happily married and a mother of a beautiful little girl,

one yr old.

> I recieved my new liver on Aug 2, 2002, from my wifes brother,

after he committed suicide and we turned out to be a perfect match.

I've had a few bumps in the road, but am healthier and more active

than I had been for a long time.

> Please take every day knowing that there is light at the end of

the tunnel and in my opinion, ther really is a santa claus. Tim L

>

>

> ----- Original Message -----

> From: tomalimattich

>

>

>

>

>

>

[Guest guest]

,

I had PSC for 25+ yrs before my tx, although it had been misdiagnosed for a good number of years. I had been on the list for about a yr when my BIL died. I tried to get the Drs attention for about 6 mos, because I could feel my body changing, I believed for the worse, but I didn't have any solid proof to hang my hat on. We sold our house and moved into a condo, because I wanted my wife to be ok after I was either gone or too sick to take care of things. Again, no scientific data for the Dr, just a sure feeling I was going down.

When Joe died and the family wanted me to have his liver ( they didn't realize all the things that had to go right for that to happen ) I was not sick enough for tx to be immiment and the surgeon did not want to give it to me. We had a pretty spirited discussion in my room about it and he left to look at Joe's liver, because he had heard it was fatty. We were getting ready to go home when he came back in and said it was a go and that Joe's liver was as good as any that he has transplanted. I think my Hep helped convince him, because at least 5 other lives were saved that day because I needed a liver. Without that Joe's organs would not have been donated. My FIL still talks about burying his son as an empty shell.

I digressed, After thee sugeon opened me up and took out my liver, another Dr in the OR later told me he stopped and said, "we did the right thing". There was a large funky ( his word ) on the side of my liver which contained a hepatoma, of which, no one had a clue.

Probably more info than you wanted, but I think that we should be armed with all the info we can get. my point being that without this groups info and my research, even looking at the pictures of txs, I may not have won that argument, given up and gone home. Would I be alive today? Who knows, but knowledge is definitely power when advocating for yourself or others.

Ti L

Re: New member: a few Qs

Would you mind sharing more about your story? Was it very sudden when you knew things changed and your condition was deteriorating or did you just regularly get your MELD re-verified and modified your listing placement? What kind of timeframe?Thank you again.>> ,> I do not have an answer to most of your questions, as PSC treats all of us in a different way and on an individual time table. What I can do is give you hope that things can get better.> I'm very sorry about your husbands brother passing away. Leukemia treatment is a terrible thing to go through, both for the patient and family. Our daughter got leukemia when she was 25 and we had quite a time of it, but, she came through it with a cure. She is now 36, happily married and a mother of a beautiful little girl, one yr old.> I recieved my new liver on Aug 2, 2002, from my wifes brother, after he committed suicide and we turned out to be a perfect match. I've had a few bumps in the road, but am healthier and more active than I had been for a long time.> Please take every day knowing that there is light at the end of the tunnel and in my opinion, ther really is a santa claus. Tim L > > > ----- Original Message ----- > From: tomalimattich > > > > > >

[Guest guest]

Dear Tim,This is why it is good to share our collective stories. Knowledge is definitely power, I urge everyone that can to come to the conference in Pittsburgh. The information that is shared is just incredible and helped me so much last year.This year with Dr. Lindor should be just awesome.Hope to see lots of new faces this year, and I can't wait to see everyone from last year.LeeProbably more info than you wanted, but I think that we should be armed with all the info we can get.  my point being that without this groups info and my research, even looking at the pictures of txs, I may not have won that argument, given up and gone home.  Would I be alive today? Who knows, but knowledge is definitely power when advocating for yourself or others.Ti L-

[Guest guest]

Lee,

I made our hotel reservations as soon as it was available. Tim L

Re: Re: New member: a few Qs

Dear Tim,

This is why it is good to share our collective stories. Knowledge is definitely power, I urge everyone that can to come to the conference in Pittsburgh. The information that is shared is just incredible and helped me so much last year.

This year with Dr. Lindor should be just awesome.

Hope to see lots of new faces this year, and I can't wait to see everyone from last year.

Lee

Probably more info than you wanted, but I think that we should be armed with all the info we can get. my point being that without this groups info and my research, even looking at the pictures of txs, I may not have won that argument, given up and gone home. Would I be alive today? Who knows, but knowledge is definitely power when advocating for yourself or others.

Ti L

-

[Guest guest]

Tim,

No need to apologize for the details - I prefer it actually. Having

been through so much medically (12 brain surgeries with my brother)

and helping care/clean him at home, as well as being a mother, there

just isn't that bugs me anymore. I agree that knowledge is power as

long as we don't allow it to make us paranoid and over-react. It has

served me well in the past, all my research and inquiries, as I knew

what questions to ask BEFORE so that then AFTER the

surgeries/procedures I actually was more informed and was able to

better explain things to my brother and /or when it was my husband to

calm his nerves a bit.

I appreciate the information. Gathering info from those who

have " been there-done that " enables us to be knowledgeable about a

larger variety of possibilities and thereby hopefully eliminate too

many surprises. There are sooo many things to take care of when

caring for someone who is ill.

> >

> > ,

> > I do not have an answer to most of your questions, as PSC

> treats all of us in a different way and on an individual time

table.

> What I can do is give you hope that things can get better.

> > I'm very sorry about your husbands brother passing away.

> Leukemia treatment is a terrible thing to go through, both for

the

> patient and family. Our daughter got leukemia when she was 25

and

> we had quite a time of it, but, she came through it with a cure.

She

> is now 36, happily married and a mother of a beautiful little

girl,

> one yr old.

> > I recieved my new liver on Aug 2, 2002, from my wifes

brother,

> after he committed suicide and we turned out to be a perfect

match.

> I've had a few bumps in the road, but am healthier and more

active

> than I had been for a long time.

> > Please take every day knowing that there is light at the

end of

> the tunnel and in my opinion, ther really is a santa claus. Tim

L

> >

> >

> > ----- Original Message -----

> > From: tomalimattich

> >

> >

> >

> >

> >

> >

[Guest guest]

Great, can't wait to meet you! You and I must have been the first two to register. LeeLee,I made our hotel reservations as soon as it was available.  Tim L Re: Re: New member: a few QsDear Tim,This is why it is good to share our collective stories. Knowledge is definitely power, I urge everyone that can to come to the conference in Pittsburgh. The information that is shared is just incredible and helped me so much last year.This year with Dr. Lindor should be just awesome.Hope to see lots of new faces this year, and I can't wait to see everyone from last year.Lee

[Guest guest]

Lee has given you excellent resources, so I won't go there. Also great

advise to pace yourself.. My thought would be everyone is individual for

some symptoms never become debilitating in the sense of loss of employment

prior to transplant, at the other extreme some never make it to transplant.

We have all been reminded of these events again most recently. It is just

like Forest Gump philosophy " life is like a box of chocolates........ya

never know what you'r gonna git " ...........

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...