Re:

[Guest guest]

Lynn

How long has Mike had UC and when did he start having problems with his

liver....

Tyler was diagnosed with Crohns at 10 and is 17 now and the liver problems

are already there....PSC and AIH...

my other son has had UC since he was 3....he is 22 now....so far no

other problems but wonder what we should be looking for.....He doesn't get

labs done....and insurance won't pay for it for no reason since he is doing

well....I worry about him because he is doing well and he doesn't want to go

to the docs....One reason being that they always think that they can't get

anything....the other I truly believe is that he might be afraid to find out

something else could be going wrong....He is very active...and like everyone

else is never sick with colds or flu etc...He also works at a job with no

insurance and then he is a performer...also no insurance....It was so much

easier when he was younger and I was in charge and made the appointments and

he didn't really have any choice....Just wondering about the length of time

for UC patients before they start to have other problems....

My thoughts are with you and Mike....Is he in Mass. this week? Hope he is

getting some help...

Luanne Ty's mom

[Guest guest]

Luanne:

Try to get your son to go in for a physical. Most insurances will pay for an

annual physical. If the Dr knows the history he should run some blood tests.

I had UC and went in for my physical and thats how they found my LFT's were

all messed up. I had had UC for 12 years at that point. That was the first

year the LFT's were different so the PSC was just starting. I have been on

Actigall since with no progression. I know it's hard to lean on the kids but

I think you need to. I have 2 sons, 26 and 32 and still need to remind them

of this kind of stuff once and a while.

Good luck

Dwight

Re:

> Lynn

> How long has Mike had UC and when did he start having problems with his

> liver....

> Tyler was diagnosed with Crohns at 10 and is 17 now and the liver problems

> are already there....PSC and AIH...

> my other son has had UC since he was 3....he is 22 now....so far no

> other problems but wonder what we should be looking for.....He doesn't get

> labs done....and insurance won't pay for it for no reason since he is

doing

> well....I worry about him because he is doing well and he doesn't want to

go

> to the docs....One reason being that they always think that they can't get

> anything....the other I truly believe is that he might be afraid to find

out

> something else could be going wrong....He is very active...and like

everyone

> else is never sick with colds or flu etc...He also works at a job with no

> insurance and then he is a performer...also no insurance....It was so much

> easier when he was younger and I was in charge and made the appointments

and

> he didn't really have any choice....Just wondering about the length of

time

> for UC patients before they start to have other problems....

> My thoughts are with you and Mike....Is he in Mass. this week? Hope he is

> getting some help...

> Luanne Ty's mom

>

> ------------------------------------------------------------------------

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[Guest guest]

Lynn,

He said that he does have a lot of support from family and friends. I'm

not sure where he is from. Thank you!

Love,

[Guest guest]

Thanks so much for the info, Aubrey....This makes much more sense to me.

I hope I can be " post transplant " soon.

Aubrey Goldstein wrote:

> Hi ,

>

> I got my tx in Canada. We don't use UNOS criteria, but our criteria are

> very similar. I don't think cholangitis attacks are specifically

> mentioned, but, obviously being hospitalised is included as a problem in

> your favour, as long as it has something to do with your liver disease.

> I agree that this symptom/sign should be significant if it results in

> hospitalisation for antibiotics. Because that is a serious complication.

> High bilirubin counts mean different things in different diseases and

> that's perhaps why they are counted differently by UNOS.

> Aubrey

>

> ------------------------------------------------------------------------

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> http://click./1/2622/5/_/24674/_/953842308/

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> eGroups.com Home: /group//

> - Simplifying group communications

[Guest guest]

Michele,

I just unsubscribed " MishBruno@... " , and directly added

" MishBruno@... " to the support group. In the future, if any members

would like to change their e-mail address in the group, you can send these

requests directly to me at PSCMODERATOR1@..., or you can:

Unsubscribe (your current e-mail address) by sending mail to:

-unsubscribeeGroups

Subscribe (with your new e-mail address) by sending mail to:

-subscribeeGroups

Love,

[Guest guest]

Hi Barby, hope all is well! I have heard good things about kansas! Mom of 5

boys, wow! Hands full. This is so strange...I just found this site

yesterday. Of all things, today we received papers from the Mayo.

will finally be starting the " open-label

pilot study evaluating Mycophenolate Mofetil ( cell cept) in patients with

PSC,

IRB 1166-9900 " . We were sooo happy! One of only 30 patients. Still a

little nervous about being a " lab rat " so to speak, but....it is for

the good of everyone that has this!!! Anyway, we will keep you posted....

I am a mom, 16 daughter and 7 year old son. Just sweethearts. Ok, now I

have brain fog, how long have you had this, what are you doing for it, meds,

etc. sorry, been on the net alot today.

Take care!!!!

[Guest guest]

In a message dated 04/17/2000 8:16:27 PM Central Daylight Time,

Kkbhirsh@... writes:

<< how long have you had this, what are you doing for it, meds,

etc. >>

,

lol I understand about brain fog and usually can't even blame it on the

PSC! Trying to keep up with everyone's schedule around here is enough to

put me in a tizzy.

I was definitively dx in Nov. 99 but had inklings that it was coming from

when I had my gallbladder removed in 95. Actually my docs aren't doing

anything for it right now. Only the antibiotics for the cholangitis

attacks. I just finished my last dose of antibiotic on Thurs. and am

already experiencing the pain of the infection again. I will call the doc

tomorrow and maybe I can talk them into given me a standing order at the

pharmacy. Since my brother is my pharmacist he won't let me take anything

the wrong way!

I have gone through the pre transplant workup just this month and depending

on what they say at the team meeting will be listed. My liver function tests

all came back normal and am not sure what to think of that.

What is cell cept? Is it testing a new drug? Just showing my

ignorance.....

Barby

married 20 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR 1994

PSC- dx in 1999

[Guest guest]

Hi Barby, don't feel ignorant, lol! Know what you mean there, and I dont

even have psc, hubby does.... Our poor children, they have both parents with

brain fog, HA!

Cell cept ( Mycophenolate Mofetil) , as I understand, used for post trans

patients, but now trying on pre patients. Forgive me, I repeat myself alot,

cant keep up with the net, anyway, just received the papers from the

Mayo, to be a participant in the study of cell cept in patients with psc, one

of only 30 people. Probably saw my mail earlier about that. You know what

is strange? He has had a very good year, so I have neglected to read,

research as I usually do. I would have to dig out all of my material to be

of much help to anyone. I feel bad about that, but, I still push the organ

donor awareness program all over the place. Later,

[Guest guest]

Hi Lynn,

Thanks for your advice! We have only eliminated red-meat from the diet. We

eat lots of fish and chicken and turkey, cheeses, and eggs. After reading so

much about colon cancer, (check out the mayo clinic's website), they state

the only thing that they have ever " proven " to stave off colon cancer is

eliminating red-meat (that means pork, (the pork industry did a major

public-relations campaign to make people think they are " white meat " , meats

are either red-meat or poultry or seafood, there is no " white meat " category.

Mitch's liver specialists was very positive about eliminating red meat from

the diet. I have done that for 11 years now and feel the world would be

better off eliminating this because of the difficulties of digesting these

products.

[Guest guest]

Hi Lynn!

Your first sentence brought back a flood of memories. I remember your

saying almost the same thing to me when I was trying to find a site like

this one!! You have been such a good friend!

Your talking about protein made me think. I am not to have but 2 oz. of

protein a day, no carbs, no sugar -- almost nothing and I am not losing that

much weight. I just don't know what to do. I am so very disgusted with the

weight thing. I am looking so bad -- everything is pointing south, if you

know what I mean!! Drat -- even my knees are falling!! What a depressing

sight I am. The fat under my chin is now " blowing left and right in the

wind " !! I just hate to die looking like this. But there is one good thing,

whomever gets my skin after I am dead -- they will have enough to help at

least 50 people and they won't have to scrape the skin off -- just cut and

there will be plenty to go around!!!

Take care. As I posted just a while ago, I didn't know anything about

. I am so very worried about my mind thing -- I wasn't to swift

before this stuff, but now it is awful. Couple the PSC " brain fog " thing and

add high ammonia levels, you have a blubbering idiot!! LOL

Hugs and love,

Biddy

> Hi, my name is Lynn and my husband Mike has PSC............All I wanted to

> mention was to be very careful about eliminating protein from your husband

> diet. . If one doesn't have the adequate amount of protein then the body

> takes it from the muscle mass....that's when you loose tone and

> weight....and I really don't think that's good....However check with your

> doctor.

> Lynn

>

>

> ------------------------------------------------------------------------

> Good friends, school spirit, hair-dos you'd like to forget.

> Classmates.com has them all. And with 4.4 million alumni already

> registered, there's a good chance you'll find your friends here:

> http://click./1/2885/5/_/24674/_/956615249/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

Hi ,

I am assuming you are new to the group? I haven't been on in awhile. I

just wanted to welcome you and introduce myself. I am 39, mother to 8 year

old (male) who was diagnosed with PSC in 8/99. He's doing fine as far

as his PSC but we do struggle with many other issues with him (and his two

brothers) who also have ADHD, ODD, Anxiety and Depression and possible

Bipolar tags after their name (all mental health disorders). I'm here today

and gone tomorrow - not literally but I alternate back and forth between

support groups and lately the Bipolar Support has been my life line. Nice

to meet you. I'll try to keep up on my mail and get to know you!

Re: Long time frame-Biddy

> RE: Fatigue and getting nothing done......You know what my husband says

about

> that....(psc since 97) " It will get done on a day when I feel

good... " ..And

> that is a quote from a workaholic....Hope that I stated that

correctly...Now,

> when is tired, he does more relaxing things, rather then pysical.

Read,

> watch movies, talk on the phone, visit with family and friends, etc... He

was

> always on the move, but now, takes it easy and enjoys. I am just the

spouse

> that observes, and, I rather enjoy that he sits down once in awhile...But,

as

> a spouse also, I also see the frustrating side when he really wants to get

> something done. I also get bummed out when he goes to bed at 6pm..Would

like

> to share the day with him, but knows he needs his sleep. First things

first,

> ya know? I can understand the psc patients furstration.....

> Try to look at the good side of fatigue.... Kellly

>

[Guest guest]

Aubrey,

What you risk the doxycycline? Things are going so well for him right now

I'm afraid of upsetting something. My husband says...if he gets diarehea of

any side effects he just stops the medication. He's to have a LFT profile

done in a month to see if it makes his LFT's rise. Right now, they're

normal. What would you do, just suffer through the horrible acne, or try the

antibiotic? Do I trust the doc's or just not risk it? HURRY...he took his

first one this morning.

> Hi ,

>

> Doxycycline is not an anti-inflammatory. It is an antibiotic related to

> the tetracycline family that have been used for many years in the

> treatment of acne. It tends not to affect the flora of the gut and

> therefore may not cause problems there, but it's not guaranteed to have

> no effect there.

> Uveitis is an inflammation of the eye seen more commonly in people with

> UC. It is fairly easy to treat when it happens and should be watched for

> in anyone with UC. Yearly Ophthalmology checkups are a good idea in

> anyone with UC.

> All the best to you and your son.

>

> Aubrey Goldstein, MD

> Liver tx, May/98

>

> ------------------------------------------------------------------------

> Life's too short to send boring email. Let SuperSig come to the rescue.

> http://click./1/3805/5/_/24674/_/957463888/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Congrats !

Here's hoping for a speedy recovery!

Gracie and Ed

[Guest guest]

You must be so happy to be coming home to NY. Congrats!

Dawn

[Guest guest]

Hi,

I'm at work and will show Ed your message when I get home. But I

just wanted to tell you that I'm beginning the process of living

donation at NE Med. In July I'll have the Cat Scan, MRI and

bloodwork. We met with Dr. Freedman and I felt a lot better about

everything afterwards. I hope the process brings good news for you

soon and I hope I can get similar good news.

Stay in touch and have fun on the Cape. I used to go to S. Yarmouth

every year. It's beautiful.

Gracie

[Guest guest]

,

You have my love, hugs and prayers. Pass them on to Dalton as well, and

keep on hangin' on. You have amazing strength and courage.

Love,

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

> UPDATE:

> Dalton was supposed to get transferred to a Children's hospital in

> Columbus Ohio. Everytime we get the date that we are going, there's a

> setback. Right now, his muscles are VERY tight, even though they are

giving

> him muscle relaxers through his PEG tube, and through patches on his arms.

I

> think he's starting to glare at me, just as much as he does the nurses

<grin>

> I do mouth care on him frequently, and also do range of motion on his

arms,

> legs, etc...

> Last night, while my dad was changing Dalton's bed... I was holding

him,

> and singing to him. I got the faintest of smiles out of him... which of

> course cheered me up.

> Everything changes from moment to moment. Sometimes he has a good

gag

> reflex, and other times he doesn't have one at all. Things like that come

> and go.

> Please everyone, keep praying for him. Although I'm going to love

him

> regardless of how he is, it doesn't seem fair that he's going to spend his

> life in a hospital bed/wheelchair.

> I'm going to try to keep my appointment for my ERCP on May 25th,

> depending on how Dalton is doing. I'll let everyone know how that goes.

> Love,

>

[Guest guest]

Wonderful news !!!!! You and your living donor will be in my thoughts

and prayers.

Dawn

[Guest guest]

Friends star 'doesn't need liver transplant'

Friday 26 May 2000 (Reuters)

_____________________

Friends star is not in hospital awaiting a liver

transplant, his spokeswoman says.

The 30-year-old actor, who plays Chandler in the hit television

series, spent two weeks in a Los Angeles hospital after being

admitted with stomach cramps.

But his spokeswoman said he had left hospital a number days ago and

is now feeling much better.

She said: " Contrary to what is being reported as fact in regard to

's health, it is completely untrue that he needs a liver

transplant. "

, who has battled an addiction to painkillers in the past,

escaped unhurt after his Porsche crashed into the porch of a house in

the Hollywood Hills area at the weekend.

He had swerved to avoid another car and police said he was not under

the influence of drugs or alcohol at the time of the accident.

[Guest guest]

I am also going to send one of since I talk about him also....This was

from last summer....He was in a Drum Corp....Cadets of Bergen County...This

was in a Sunday paper on the front page in Wisconsin...where finals

were.....He aged out(at 22) last yr...so this year they asked him to help

write and teach the show....So he has been gone for a couple of weeks and

will be on tour for the rest of the summer.....

already saw this pic months ago.....thought he was cute and we had

even talked about getting together when he and I were in Ohio for Winter

Guard finals.....didn't work out.....she had to work....and when I got back I

found out that Dalton had been hurt.....same weekend.....and next year the

Winter guard finals are in Wisconsin...so we will not get that chance

again.....Sad....

I am done with My pictures of my boys....I hope nobody gets upset.......

PS...My daughter who is 25 is beautiful also....but no picture in the

computer....

Luanne Ty and Trav's mom

[unable to display image]

He is the one with the rifle....

[Guest guest]

LuAnn,

The pic still does not appear to be downloaded to view. I will attach the

one of that I have saved. Hope it works

Dianne A.

[Guest guest]

LuAnn,

What a handsome son!!! I'm glad I finally got to see the pic.

Barby

[Guest guest]

Hi, Gracie,

No, I didn't get the e-mail. Please try again. When does your eval. start

again?

Gracie and Ed Reynolds wrote:

> Hi ,

>

> I sent you an email privately. did you get it? If not I'll have to

> check your email address to see if I have the correct one.

>

> Gracie

>

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[Guest guest]

Aubrey,

This is what Ken's 2 Dr.s are telling us. PSC causes all vitamins to diminish in the system. Thats why so many have anemia. In Ken's case he is real low on Vitamin A and K. They seem to think thats why so many with liver disease have cancer. It may be only a theory. But might be worth more thought. Remember Pam said Quantell needed Vitamin K shot to stop his bleeding gum. The vitamin A over load I worried about is for people who have normal levels, so the Dr. says. They are trying to bring Ken up to normal. I haven't seen any studies on vitamin levels and PSC. But when I have time I'll look for some. Barb

Dental Implants

As mentioned PSC can cause osteoporosis and/or poor poor bone growth andrepair. This is thought to happen because the liver is responsible forhelping to convert Vitamin D into the active form of the molecule.Sunlight also is involved in this process as are your kidneys. Becausenot enough is converted into the active form bone growth and repair isnot normal. This means that your bones will become weaker, any surgeryon the bones, including your jaw/maxilla, will take longer to heal. Inyour case the implants won't take because the pegs inserted into holesdrilled into the bone won't 'cement' in. The possible answer to this is Calcitriol (the active form of Vitamin D)plus calcium and perhaps a bisphosphonate such as Fosamax (or others) inorder to stimulate normal bone metabolism. This should definitely bepart of a post-tx treatment regimen and, I think, a good idea for pre-txtreatment for liver disease patients. Ask your doctors. Aubrey

[Guest guest]

Hi !

I tried emailing you from here by clicking on your email address and

then at mlt145@.... I guess neither way worked! My evaluation

is July 26th. Here's my message:

Hope you're feeling well. I've been reading about your posts

concerning nominating Handi for Oprah's award and I'll do my part in

voting for her. Ed and I are devoted animal lovers as well as PSCers

so we are behind you all the way!

I have a question for you, or Handi. It sounds trivial but I

need to know something concerning health insurance, if you don't

mind. I believe the " double " transplant is covered by the transplant

recipient's Health insurance, but, until then my health insurance is

responsible for the tests I'll go through. I don't like my health

insurance provider, as they pick and choose what they will and won't

pay for. I need to get a referral for NEMC for the tests which are

already set up. Do you have any advice? Should I speak with the

transplant dept. about wording the tests like they're to diagnose

something for me? Or do they do that automatically? I don't think my

insurance will pay for " elective " tests for an experimental

procedure. I'm worried that if they put down that it's for an

elective procedure they won't pay. Again, I know money isn't the

important thing here, but, we are just scraping by as it is and I

need to be prepared if I'm going to have to pay for these tests.

Thanks a lot !

[Guest guest]

HI, Gracie,

Health Insurance: I have Cigna. My insurance paid for the recipient's and

donor's costs, from date of surgery forward. Cigna does not cover eval.

expenses, so we're raising money for those (upward of $15,000 at least is

needed). I think each policy is different. Contact Marlon Vaillencourt at

the tx office. He knows all the answers and will help.

Gracie and Ed Reynolds wrote:

> Hi !

>

> I tried emailing you from here by clicking on your email address and

> then at mlt145@.... I guess neither way worked! My evaluation

> is July 26th. Here's my message:

>

> Hope you're feeling well. I've been reading about your posts

> concerning nominating Handi for Oprah's award and I'll do my part in

> voting for her. Ed and I are devoted animal lovers as well as PSCers

> so we are behind you all the way!

>

> I have a question for you, or Handi. It sounds trivial but I

> need to know something concerning health insurance, if you don't

> mind. I believe the " double " transplant is covered by the transplant

> recipient's Health insurance, but, until then my health insurance is

> responsible for the tests I'll go through. I don't like my health

> insurance provider, as they pick and choose what they will and won't

> pay for. I need to get a referral for NEMC for the tests which are

> already set up. Do you have any advice? Should I speak with the

> transplant dept. about wording the tests like they're to diagnose

> something for me? Or do they do that automatically? I don't think my

> insurance will pay for " elective " tests for an experimental

> procedure. I'm worried that if they put down that it's for an

> elective procedure they won't pay. Again, I know money isn't the

> important thing here, but, we are just scraping by as it is and I

> need to be prepared if I'm going to have to pay for these tests.

> Thanks a lot !

>

> ------------------------------------------------------------------------

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