athan

[Guest guest]

>Would it be a fair statement that Europeans are ahead of us in their

>thinking and treatment of some disorders and their prescribing of

>alternatives....???

Mette's Danish doctor prescribed UDCA..

and has not mentioned any alternatives..

as far as I'm aware there are no known alternatives for UDCA in treating PSC

that have any body of testing to prove or disprove effectiveness..

well, as far as that goes UDCA is not such a proven therapy for PSC either..

we do plan to talk to him about the higher dose level and milk thistle (when

we finally get in to see him)

DenverD: husband of Mette (44), UC '73, dx PSC 6/2000

alive in Denmark <www.Texan.dk>

[Guest guest]

> >Would it be a fair statement that Europeans are ahead of us in

their

> >thinking and treatment of some disorders and their prescribing of

> >alternatives....???

Well, I'm not really an expert on this or anything, and I guess the

answer might depend on what point of view you take, but I have heard

that alternatives are more accepted by the mainstream medical

community there. I think they are also more regulated, which is why

herbals from Europe are supposed to be more likely to be of good

quality, and more likely to actually be what they say they are!

ahtan

[Guest guest]

athan,

Did you reread page 12 ? If I am reading right I wouldn't want TIPS and would rather take my chances with another bleed.

If what you say about organ donor is right ( and that makes sense to me ) thats better than my thinking it's sitting in some cooler some where. But still think it would be awlful for donor family to sit around waiting for their love one to donate -- it could take several hours. What do you think about the new policy ? Barb

No, not everyone has this procedure. Actually I'd be interested to knowif anyone here has had it done, and what the effects were. I'm in theposition that if I have another bleed they'll probably want to do a TIPSprocedure on me (It helps to alleviate some of the problems associatedwith portal hypertension).athan

[Guest guest]

" T.J. Henshaw " wrote:

> > athan,> Did you reread page 12 ? If I am reading right I

> wouldn't want TIPS and >would rather take my chances with another

> bleed.

>

> It's definitely true that a TIPS procedure is a tradeoff. They are

> trying to prevent a rebleed with banding right now, so hopefully that

> will work and I won't need to decide on the TIPS issue. I think that

> my doctor is worried that the bleeding might be a more pressing risk

> right now than liver failure. My liver function has been prety good

> lately, and I'm not able to get on the list, so I may have quite a

> while to wait before I can get a transplant.

>

> Another consideration is the fact that my MELD score is pretty low

> (-3). That means that (at least theoretically) I should tolerate a

> TIPS procedure pretty well. Of course, UNOS seems to think that since

> my MELD score is low I'd also tolerate a bleed pretty well too. At

> least that seems to be their reasoning for not giving it extra points

> in the proposed scoring system.

>

> I'm sure that my doctor would reevaluate all the factors if I do have

> another bleed and make his decision based on what's happening then.

> If I'm on the list by then, and my liver function is siginificantly

> worse, it would probably not be as good of an idea to do the TIPS

> procedure. That's part of why I'm trying to learn about these things

> now. I want to be able to understand what the alternatives are, and

> what the considerations are so that I can have some input into the

> descision.

> > What do you think about the new policy ?

>

> I think UNOS is honestly trying to be fair, and I think the MELD

> scoring system is a reasonable model to use. On the other hand, I'm

> pretty sure it will make me have to wait longer for a transplant,

> especially if they don't give any extra points for life-threatening

> complications like variceal bleeding.

>

> athan

[Guest guest]

Thanks athan for your input. Sounds like you and Tim don't mind the new policy. I on the other hand have several problems with it. I sure don't know how much UNOS will listen to the people they serve but I sure hope they will. Barb

[Guest guest]

Barb,

When are you going to the meeting again? I want to write something but have had trouble sitting and I have been too busy at work lately. I'd like to try to write.

Peg

-----Original Message-----From: T.J. Henshaw Sent: Monday, September 11, 2000 4:53 PMTo: egroupsSubject: Re: athan

Thanks athan for your input. Sounds like you and Tim don't mind the new policy. I on the other hand have several problems with it. I sure don't know how much UNOS will listen to the people they serve but I sure hope they will. Barb

[Guest guest]

What a shame we can't get all of them to be active in letter writing !! We all know at some point they are going to care about the MELD scores. It's much easier to get what we need now before it goes into law - than after. Barb

[Guest guest]

>It's much easier to get what we need now before it goes into law - than after.

>Barb

Yes, that's true. Actually I think that if they do make this change it

will be almost impossible to go back the other way even if they decide

that the change isn't working out as well as they thought. Since

they're going to emphasize more medically urgent patients, the less

medically urgent patients won't have lost their chance at a transplant

(for the most part)... it will just have been postponed. But if they

try to go back the other way, and emphasize transplantation at the most

medically effective point of liver failure, then those who have already

passed that point will miss out on their chance of transplant

altogether!

I don't know if that makes sense! I think it does, but I'm not sure I

expressed it very understandably!

athan

[Guest guest]

>It's much easier to get what we need now before it goes into law - than after.

>Barb

Yes, that's true. Actually I think that if they do make this change it

will be almost impossible to go back the other way even if they decide

that the change isn't working out as well as they thought. Since

they're going to emphasize more medically urgent patients, the less

medically urgent patients won't have lost their chance at a transplant

(for the most part)... it will just have been postponed. But if they

try to go back the other way, and emphasize transplantation at the most

medically effective point of liver failure, then those who have already

passed that point will miss out on their chance of transplant

altogether!

I don't know if that makes sense! I think it does, but I'm not sure I

expressed it very understandably!

athan

[Guest guest]

> Hmmm. I wonder how this figures in with the Mayo PSC model

UNOS used 4 different models to come up with MELD - one of which was the

MAYO PSC Model. They didn't publish all of them , and alot of people were

mad because they couldn't figure out - like you where non- TIPS fit in.

They were very sorry and promised to do better publishing their reports.

- significant enough to be an accurate predictor. If that's

> what they're saying, and if they're right, that's a good thing. I still

> question whether it is actually true though.

This is exactly what they are saying -- I have alot of paper work that I

( shall we say " lifted " while they were at lunch )

haven't had time to read , but one chart lists:

MELD MELD w/Risk Factor

Variceal bleed :

Historical cirrhotics: 182 189

Hospitalized cirrhotics 92 93

Ascites :

Hospitalized 90 96

Encephalopathy:

Hospitalized 90 100

So you see they are saying the score isn't much changed by adding risk. Also

on this chart is the " P " (dealth) factor

and the MELD & MELD/risk #'s are even closer.

Barb

[Guest guest]

> OK That gave me a score of 7... but the page used to have a choice of

disease type (alcoholic or cholestatic vs. all others), and it's not there

now

athan, Did you go to the address I gave ?

The Meld score on that page just gives whole #'s, but they said it would

round up. I don't think disease is weighing as heavy as before.

> Actually they're all symptoms of liver damage. Yes, they're secondary

> symptoms, but the cause is still the same.

I know for a fact I'm not getting all this right. I tryed real hard to write

down everything they said. But they were talking to doctors who understood

what they were saying, and I don't think they would of been happy with me if

I stood up and said slow down or how to you spell that ? Besides when they

just happened to mention that bleeds etc. didn't matter in the big picture

I kinda " lost it " of course you all know me --- sweet thing that I am.

They were really lucky I let them all live. So there may be parts I didn't

get or got wrong. It was hard to see with all the smoke coming from my

ears. The thing I do know is this MELD is a done deal. So like it or not

( I'm not 100% happy about it ) we have to fight with UNOS inside the lines

of MELD

[Guest guest]

You're a kick! I would have liked to have been there. I think you did an

excellent job. I can't even keep up with your description without zoning

out - that's no reflection on your description, just I'm so tired of all

this stuff and can't concentrate on the figures of it. I guess I'm kind of

feeling WHAT'S THE USE! Sorry. Some day I'll try to figure it out.

Peg

[Guest guest]

Hi there..

Today Ty go up about 9 and did some homewrok some computer stuff and then got

ready to leave for band practice....this is marching band...outside for hours

and then off to a competion....he gets thru a day like this better than one

where he is not very active...very odd....he probably won't be home till

midnight...but tomorrow he will get the usual nap that his body needs....and

by 9pm he is ready for bed...The hardest thing is to be tired and not be able

to sleep at night....

Hope you are having a nice weekend....

Luanne Ty's mom

[Guest guest]

Hi there..

Today Ty go up about 9 and did some homewrok some computer stuff and then got

ready to leave for band practice....this is marching band...outside for hours

and then off to a competion....he gets thru a day like this better than one

where he is not very active...very odd....he probably won't be home till

midnight...but tomorrow he will get the usual nap that his body needs....and

by 9pm he is ready for bed...The hardest thing is to be tired and not be able

to sleep at night....

Hope you are having a nice weekend....

Luanne Ty's mom

[Guest guest]

Hi, Luanne. Your day sounds a lot like mine. My son is also in the

marching band at High School, and he also had competition today. He had to

go to Bay Minette, Alabama. The band received Superior rating. How did

Ty's band do? Where does he go to school? I know you probably don't live

anywhere close to us, but it was unusual that both our sons had band

competition today. Sue in Florida.

Re: athan

> Hi there..

> Today Ty go up about 9 and did some homewrok some computer stuff and then

got

> ready to leave for band practice....this is marching band...outside for

hours

> and then off to a competion....he gets thru a day like this better than

one

> where he is not very active...very odd....he probably won't be home till

> midnight...but tomorrow he will get the usual nap that his body

needs....and

> by 9pm he is ready for bed...The hardest thing is to be tired and not be

able

> to sleep at night....

> Hope you are having a nice weekend....

> Luanne Ty's mom

>

>

>

>

>

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[Guest guest]

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

From: " athan "

I always worry that they'll test my ammonia etc. and decide that I don't

have it after all...

I'm not sure if I agree with you about testing. After all,

tests were made by humans ( who are not perfect ) to measure different

things. Since we know for a fact that no 2 people are alike, seems to me

what might be normal for me couldn't possibily be normal for you.

I think " normals values " are more like guidelines. So while ammonia #'s are

important and should be looked at. It's my thinking that both you and your

wife are a much better judge on " fog " .

How many stories have you heard where a patient goes to the doctor with a

problem and the doc says everything is ok . Only later to find out something

was wrong , and the patient knew it all along.

Driving past a red light with your wife in the car is not something you

would do - even if you were thinking about something else - we just don't do

that - it goes against every thing we have been taught. It's not

" plain stupidity " . Barb

[Guest guest]

I believe we've been told that ammonia levels aren't conclusive on testing

for Brain fog too.

Course even though I've been taught not to go through a red light, I have on

occasion stopped at a light and then gone through, when my mind was not on

my driving for me who doesn't have PSC, it is stupidity or lack of

concentration.

I believe you are on lactalose aren't you. The doctor said if it helps you

then it probably is brain fog. Phil tried it and thought it helped but I

had to admit it didn't make much difference for him an since he isn't into

cirrhosis yet I guess I have to agree that his is more distraction and lack

of concentration rather than brain fog. I am in my mid 50's and have been

having memory problems for a long time so I'm sure that can happen at

earlier ages so determining brain fog has got to be one of the biggest

challenges and I hate to think we wouldn't do anything about it until one

totally forgets where they are and can't get home from someplace or has more

serious complications.

Peg

[Guest guest]

I agree that it probably is brain fog. Especially after I accidently

left work an hour early the next day! I just got up and walked out, and

drove home. My wife said " your home early! " and I realized I'd left at

4:00 instead of 5:00! I have no idea where I got the idea it was time

to leave...

As far as testing the ammonia, I guess the thing I'm afraid of is that

the test will come out normal, and the doctors will decide there's

nothing wrong with me after all. I'm pretty convinced that something's

going on, and so are my doctors... I just don't want them to change

their minds (not because I want there to be something wrong, but because

I think there is and I want them to recognize it.)

athan

[Guest guest]

Especially after I accidently left work an hour early the next day! I just

got up and walked out, and drove home. My wife said " your home early! " and

I realized I'd left at

4:00 instead of 5:00! I have no idea where I got the idea it was time to

leave...

I know it's not really funny but I'd sure like to have an excuse like that

to leave work early.

In all seriousness I think the doctor said that things like you are doing

more describe brain fog than the ammonia testing can do. I think you are

given points for that. Be sure to let your doctors know. I'm surprised

that they haven't listed you cause with that and the bleeding varacies I

would think you should be listed. When Phil went for listing the coordinator

told us to let them know if Phil was doing things like that.

Peg

[Guest guest]

Peggy Alfeld wrote:

>

> I believe we've been told that ammonia levels aren't conclusive on testing

> for Brain fog too.

>

> Course even though I've been taught not to go through a red light, I have on

> occasion stopped at a light and then gone through, when my mind was not on

> my driving for me who doesn't have PSC, it is stupidity or lack of

> concentration.

>

> I believe you are on lactalose aren't you.

Yes. It seemed to help, but recently I've been having some more strange

episodes. Before I went on it I'd forget things, but realize that I'd

forgotten something. More recently, I've been forgetting things, but

not realizing that I'd even forgotten!

I guess if it was just once going through a light, I'd probably just

pass it off, but there were enough things happening that just weren't

normal for me (especially before I went of the lactulose) that I think

something is wrong... It is hard to tell though, 'cause it's so

subjective, and has to be compared with what's 'normal' for each

person. Also it tends to develop so gradually, that by the time it gets

bad, you've gotten used to it and developed coping mechanisms. I used

to be very good at remembering things without writing them down... never

took any notes in college (except for once in a while to write down

assignments etc.), now I carry a notebook in my pocket all the time, and

if I don't write something down within about 10 seconds of when I hear

it, it's gone!

I guess that's enough rambling for now!

athan

The doctor said if it helps you

> then it probably is brain fog. Phil tried it and thought it helped but I

> had to admit it didn't make much difference for him an since he isn't into

> cirrhosis yet I guess I have to agree that his is more distraction and lack

> of concentration rather than brain fog. I am in my mid 50's and have been

> having memory problems for a long time so I'm sure that can happen at

> earlier ages so determining brain fog has got to be one of the biggest

> challenges and I hate to think we wouldn't do anything about it until one

> totally forgets where they are and can't get home from someplace or has more

> serious complications.

>

> Peg

>

[Guest guest]

> I'm surprised that they haven't listed you .

athan, I'm with Peg on this. In my view you should push to be listed.

I think anyone who is " close " to being listed, should - because of new rules

you might be much better off Grandfathered in. Barb

[Guest guest]

Again, I encourage you to report these things to your doctor because the

transplant coordinator stressed that was the kind of stuff to look for and I

really think you should be pushing to get listed. Where do you live? Is it

somewhere where getting listed and tx happens fairly quickly, course that

may change with the new Regs. I agree with Barb who agrees with me that you

should push so the MOM's have spoken.LOL

Peg

PS - You still seem very sharp to me!!!! Do you have periods of extremely

lucidity and then the forgetful times? That's how Phil is although, at this

point I'm agreeing with the doctor that he doesn't have brain fog yet. Have

you cut your animal protein intake? I think you are a lot like Phil - very

intelligent - so when you are not that way all the time it is very

distressing. Phil has going in so many directions I'm sure that adds to his

memory problems, but being very intelligent, not working without having some

other purposes other than keeping house would drive him crazy and would be

very depressing.

[Guest guest]

athan

I have told Ty the same thing...slap for awhile...because the way he digs

with the itching he will be a mess....

As far as your furniture rubbing....carpet scuffing..desk massaging...You

guys are truly a funny sight....can spot you PSCers a mile away.....LOL

Luanne Ty's mom

[Guest guest]

>I never recieved the original post from

there have been several in the last few days who have missed postings..

I wonder, if those were all AOL folks..

maybe there was a mail delivery problem within AOL..

maybe.

[Guest guest]

" T.J. Henshaw " wrote:

>

> Are you still having nausea ??

Yes, but not as bad as I was... now I'm having abdominal pain :-(

I don't really like the idea of hypnosis... I'll see if I can hold out.

The nausea actually isn't too big of a problem as long as it's not so

bad that it makes me throw up. Mainly concerned about the varices...

Thanks for the info though... I'll keep it in mind!

athan