Newly diagnosed

[Guest guest]

Hi Janice,

Welcome. I bet you have a ton of questions. Sure is quite here right now.

I know the group at MediBoard has Tap users.

Here is the link:

http://www.mediboard.com/cgi-local/ubbcgi/forumdisplay.cgi?action=topics & forum=G\

raves|APO|+Disease+and+Thyroid+Discussion & number=1

And Hello and welcome to you too Bob.

Sorry to hear you are having a tough time.

What are you doing now?

-Pam-

[Guest guest]

Hi Janice,

Everyone is different. I originally started on TAP, had an allergic

reaction (hives) then was placed on PTU for four years without any

problems!! Off meds for a year now. I know of one person who visits this

BB who has been on TAP for over 20 years and doing quite well. Don't

worry, take the meds and visit Elaine's and the ithyroid website about

vitamins and diet. Take care, Mona

Newly diagnosed

> Hello, I am new to the group.

> My name is Janice and I was recently diagnosed with hyperthyroidism.

> I have had a scan and blood tests done and now my endcronologist

> wants me to start on tapazol.

> I was just wondering what other's experiences have been Tapazol?

> Thanks for any information.

> Janice

>

>

>

>

>

>

>

[Guest guest]

Not necessarily, unless you don't respond to treatment. Usually they

hit you hard with steroids then replace with imuran.

> Hi, I was recently (about two weeks ago) told that I have AIH and

am

> actually having a liver biopsy tomorrow (3/27/02) I have had

> elevated liver functions for quite some time and pretty serious

> fatigue. They told me that I had a positive ANA blood test. Is

that

> in combination with the liver function tests enough for a

diagnosis?

> Or is the biopsy the confirmation. I think the doctor said that

the

> biopsy would stage the progression of the disease. Anyway, I came

> across this group when I was doing my research on AIH and thought I

> would see what it was all about. Im a bit overwhelmed by it all.

> There are a lot of sites with info out there but they seem to say

> pretty much the same thing, steroids... Does this mean im going to

> ultimately need a liver transplant??? Is that what happens to most

> people? ANy input would be appreciated. Thanks in advance, Cheri

[Guest guest]

Hang in there Cheri! Hope the biopsy goes well tomorrow.....just relax! It will be over in a little bit and then you will know how your disease has progressed! You are in a wonderful group!

debby

[ ] newly diagnosed

Hi, I was recently (about two weeks ago) told that I have AIH and am actually having a liver biopsy tomorrow (3/27/02) I have had elevated liver functions for quite some time and pretty serious fatigue. They told me that I had a positive ANA blood test. Is that in combination with the liver function tests enough for a diagnosis? Or is the biopsy the confirmation. I think the doctor said that the biopsy would stage the progression of the disease. Anyway, I came across this group when I was doing my research on AIH and thought I would see what it was all about. Im a bit overwhelmed by it all. There are a lot of sites with info out there but they seem to say pretty much the same thing, steroids... Does this mean im going to ultimately need a liver transplant??? Is that what happens to most people? ANy input would be appreciated. Thanks in advance, Cheri

[Guest guest]

Hello, Cheri and all ...I was recently told I have AIH

also. But since I have three years of blood tests

showing Hi levels and symptoms my doctor is skipping

the biopsy and putting me on the steroid Predinsone

and Azathispine. I think because I have Scleroderma,

Sjogrens and Hypothyroid he is trying to spar me the

this test. As you can tell I am Auto Immune popular.

Now, what I am wondering is the side effects and any

coping tips. Advice and or insight.

Please...Thank you for this group, and those that

support communication. Oh yes, I have never been on

steroids and I have bone thinning, this scares me more

than the AIH. I am wondering if I should just let the

AIH continue with out treatment at times? What would

happen? Having a hip replacement or spinal surgery

could be very difficult for me. I am only 47 and have

not had the change. I know I am in for a journey.

Thanks again Lynn in Rochester, NY

--- chch20657 <chchrrn@...> wrote:

> Hi, I was recently (about two weeks ago) told that I

> have AIH and am

> actually having a liver biopsy tomorrow (3/27/02) I

> have had

> elevated liver functions for quite some time and

> pretty serious

> fatigue. They told me that I had a positive ANA

> blood test. Is that

> in combination with the liver function tests enough

> for a diagnosis?

> Or is the biopsy the confirmation. I think the

> doctor said that the

> biopsy would stage the progression of the disease.

> Anyway, I came

> across this group when I was doing my research on

> AIH and thought I

> would see what it was all about. Im a bit

> overwhelmed by it all.

> There are a lot of sites with info out there but

> they seem to say

> pretty much the same thing, steroids... Does this

> mean im going to

> ultimately need a liver transplant??? Is that what

> happens to most

> people? ANy input would be appreciated. Thanks in

> advance, Cheri

>

>

__________________________________________________

[Guest guest]

Hi and Welcome Cheri...

From what I understand the liver biopsy is needed and then they may even want to do an ERCP...which won't get done for a couple of weeks...if they need it...

My son who is now 19 has positive ANA...but that was because he has other auto-immune diseases....plus really high liver counts...As far as treatment...prednisone is something that most take at one time or another....and with AIH...it doesn't mean that you will definately need a tx....if the meds work for you you can do well for years....

My son also has another auto-immune liver disease...PSC...and with that he will most likely need a tx...plus the fact that he has been sick since he was 9...right now he is doing pretty good....knocking on the wood desk here....

you will find that everyone does differently....some better than others....knowledge is a great thing...and you will find plently here....and the best thing is the support you will get from lots of people here....been there done that....which you will not be able to get with friends and family....they just don't know...

well anyways welcome to the group....hope to see more about you soon...

Luanne Ty's mom

[Guest guest]

Thanks , So does that mean they really arent sure about the diagnosis?

This is my first liver biopsy so its possible they could say the blood tests

are irrelevant that the liver biopsy is negative? Maybe??

[Guest guest]

Well in my case the diagnosis was definitely AIH. Biopsy just confirmed it.

I had already been on prednisone and Imuran at that point. They didn't do

one at first because my LFT's and clotting factors were dangerously abnormal

and they didn't want to risk bleeding. Anything's possible. Keep your

finger's crossed. From what I've read on the support group a lot of people

respond very rapidly with prednisone and Imuran or Cellcept. (I'm now on

Cellcept as Imuran made me terribly nauseated)

I haven't been that lucky. Things are now as controlled as they have been in

2 years however, I take many meds and they have caused side affects of their

own, however, as Harper said in one of her posts today " At least I'm still

here " and staying off the transplant list. I still work but this is a large

struggle. Hang in there it gets easier.

[Guest guest]

,

I found out in July (while of vacation at Disney World) that I have

cirrhosis. It is from an unknown source.

I went through all of the emotions that everybody else does, and there is

light at the end of the tunnel (and it is not a train).

They put on the liver transplant list September 1st and told me that I would

need a transplant in about 6 months. Well, that time has gone by and I am

still getting through all of the questions, stress, fluid gain, up days and

down days.

I highly suggest that you find a close friend or family member that you can

talk to and share your fears with, I have found a lot of faith through my

friends at my church.

If you have any more concerns or need more input please feel free to email

me.

PS I am having a live donor being checked out for the potential of me

receiving half of his liver. " Live Donor Transplant, " just something to pray

about for me.

Randy (age 49)

[Guest guest]

Hi, Im another new member to the group. Thanks to the other new members for

asking such good questions. They were ones that I was thinking of but just

didnt ask. Also another question to those of you who have had this disease

for a while...

From what I have read on this group so far it doesnt seem like the prednisone

is a whole lot of fun and that seems to be the most common treatment. What

about the live donor transplant? This is going to sound like a really silly

question but why should we suffer for all these years when a surgical

procedure could fix it, right? Granted, I really dont know the first thing

about what is involved, forgive my ignorance. When I ask around im hearing

that transplants are not as difficult as they once were but this is coming

from the general population not any particular medical person. Does anyone

know this to be true? I know the old saying though, if it sounds to good to

be true it probably is....Im guessing it just isnt that simple. Anyway, I

expect to hear about my liver biopsy in the next week. Wish me luck

Cheri

[Guest guest]

, Randy and all newly diagnosed people,

I was diagnosed age 27 and didn't know anything about the disease, actually

I don't think the medical community knew that much about it. At the time it

was called CAH, Chronic Active Hepatitis. I can't of course offer any

comparisons, the course of the disease at the time of diagnosis makes a

difference, I know two people, a man and a woman who both went into liver

failure & needed transplant before they were diagnosed. I think Gayle in

this group also went into failure first .. Gayle am I right? Diagnosis leads

to treatment and prednisone as much as we all hate it does stop the

inflamation. There are now other drugs being used, others in this group are

on combinations. Back in my day they pretty much just used prednisone.

If there is enough healthy liver tissue the liver can restore itself and

some people do really we. Everyone does not end up with with a transplant.

That said, I support Randy's advice about early consideration of a potential

living donor. Now after I've said that I can tell you I would find that very

difficult. The transplant center I was at had done a few living donors when

I got my transplant (2/98)and the subject never came up. It does now, all

the time and asking someone to give you part of their liver is a big deal!

Kidney donors have however been doing it for a long time!

Another Randy in this group received a part of a liver from his wife Cheryl.

They can respond more about this. Most peolpe don't realize it does not have

to be a relative. Kidneys match on many factors, with livers it is generally

size and Blood type (then there are some health and structural issues).

Hang in there, ask questions and believe me you can live a long time.

Patty (Miami)

Re: [ ] Newly Diagnosed

,

I found out in July (while of vacation at Disney World) that I have

cirrhosis. It is from an unknown source.

I went through all of the emotions that everybody else does, and there is

light at the end of the tunnel (and it is not a train).

They put on the liver transplant list September 1st and told me that I would

need a transplant in about 6 months. Well, that time has gone by and I am

still getting through all of the questions, stress, fluid gain, up days and

down days.

I highly suggest that you find a close friend or family member that you can

talk to and share your fears with, I have found a lot of faith through my

friends at my church.

If you have any more concerns or need more input please feel free to email

me.

PS I am having a live donor being checked out for the potential of me

receiving half of his liver. " Live Donor Transplant, " just something to pray

about for me.

Randy (age 49)

[Guest guest]

Patty,

Thanks for the information. My donor and I are schedule to meet with the

transplant doctor the middle of April. (The donor will be going through the 5

days of test April 15-19.)

The medical center does the live donors often, but they would still rather

use a cadaver instead. But with the liver shortage it is almost mandatory for

them to do more liver donors.

The medical center officials and myself have really put the donor (who goes

to my church) through the ringer in explain all of the possible problems. But

it is something he really wants to do. He is single and 26 years old.

I will keep all of you updated on the transplant. The only medicine problems

I have are the large amount of fluid pills and lactose (to keep my ammonia

level down).

Later, Randy

[Guest guest]

Cheri,

I am not a doctor but I have cirrhosis (discovered in July) and I have been

on the transplant list since September.

I am tired all of the time and I have a problem keeping my ammonia level

down. It has been very tough emotionally, because you have problems working,

going out with friends and other things we took for granted.

At first the medical center wanted to wait for a cadaver for a transplant,

but recently they have decided to talk to a couple of friends who want to

donate part of their liver.

From what I understand the recovery from surgery is very painful, but for me

and the donor. But hey, what choices do we have . . . although it has been

tough explaining the possible dangers to the donor.

My donor is getting his test for the transplant April 15-19 and at that time

(if he passes the test) we will talk to the head surgeon on the 19th to

schedule the transplant.

I will keep everyone update and let you know how painful it is for me and the

donor.

God Bless, Randy

[Guest guest]

Randy, thank you so much for sharing your information. It is interesting to

hear everyones opinion and experience on this issue. If anyone ever wants to

email me directly please feel free chchrrn@... you too Randy and best

of luck, keep us posted

[Guest guest]

Randy,

What wonderful news. I will keep my fingers crossed for both you and your

donor friend. What a wonderful gift. Donors are such selfless people.

There is no gift that anyone could give as wonderful as the gift of life. I

am so happy for you. Good luck.

I'll keep you in my prayers.

[Guest guest]

,

Thanks so much. Have you had a transplant?

Randy

[Guest guest]

Patty,

I am having it at MCV in Richmond VA.

[Guest guest]

Not yet, the donor goes for his 5 days of test on April 15-19 and we both

meet with the surgeon on the 19th. My guess the surgery will be schedule for

end of April if he checks out OK.

Randy

[Guest guest]

Hi Patty,

Yes I went into complete liver failure and had an emergency transplant I was 36 hours from dying in fact I started to go into the light 2 times. My kidneys were 2 hours from failing and I never even knew how sick I was or at all. My liver failed very fast. I was taking Tylenol, Ibuprofen, Motrin. I was never diagnosed with Fibromyalgia when I should have been so I took a handful of Tylenol which I now Know how dangerous Tylenol can be. In fact I can't take any OTC drugs.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

Cheri,

Having a transplant is not easy and is the most difficult major surgery you could ever have. And each person reacts differently which makes this a personal disease. Livers are not easy to come by. And not every person who needs a liver will get one. I volunteer for Donor Awareness and Donor Alliance. This is still so new that there is not enough education towards people with liver disease. 16 people a day die from needing a liver. So some people are going to hear about a list you are put on and rated by points of where your disease is. The new Meld system is now taking the sickest person needing a liver over someone that can still hang waiting for their new liver. There is not enough education to make people aware of how important being a donor can be. Then there are some who can manage getting half a liver from a relative, but many of them don't do well. I heard the other day about a living donor family. The donor was not strong enough and that person died. The docs prefer cadaveric livers still. They gave me a life of my liver 5 years before I may have to have another liver. I know from experience having a liver transplant was hell to stay strong to get through this and I had no education I didn't even know I needed a liver and I had an emergency transplant. There are around 7,778 on the list nation wide and only a handful will either need or get a transplant. Some people have been on the list for over 4 years. Then Like me some people have secondary medical problems due to your medical history. As for me I have 15 other medical issues that I spend much of my time in hospitals and docs offices. I am not trying to scare you, not everyone will have the same story. Like Kris Klug went back on the slopes snowboarding 2 weeks after his transplant and came home on the 4th day of transplant. He is know going all over the United States telling his story and making people aware of how important it is to learn and be made aware of liver transplants. I will be glad to share stats as I get them from Donor Awareness. So if you have more questions write me if I don't know them I will get you an answer right away.

surgical

procedure could fix it, right? Granted, I really dont know the first thing

about what is involved, forgive my ignorance. When I ask around im hearing

that transplants are not as difficult as they once were but this is coming

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

Randy,

Lactulose is the worst! ick! but boy does it work. I'm sorry you have

encelapalopathy. It is reversible and your mind will come back. That was my

biggest fear as my mind as that is the way I make a living (I am a

professor). My appreciation goes out to your potential living donor. I

can't imagine a larger gift. Nothing in life can compare. Best of luck. I

agree the cavaderic is the best way to go, Risk is always present, Where are

you having the transplant done?

Patty (Miami)

Re: [ ] Newly Diagnosed

Patty,

Thanks for the information. My donor and I are schedule to meet with the

transplant doctor the middle of April. (The donor will be going through the

5

days of test April 15-19.)

The medical center does the live donors often, but they would still rather

use a cadaver instead. But with the liver shortage it is almost mandatory

for

them to do more liver donors.

The medical center officials and myself have really put the donor (who goes

to my church) through the ringer in explain all of the possible problems.

But

it is something he really wants to do. He is single and 26 years old.

I will keep all of you updated on the transplant. The only medicine problems

I have are the large amount of fluid pills and lactose (to keep my ammonia

level down).

Later, Randy

[Guest guest]

No, fortunately not. I just went to Hepatologist in Charlottesville

yesterday. He thinks I now may have a problem with my gallbladder. I'm to

have a gallbladder scan next week and if this shows stones he wants me to

start on Urso which helps desolve gallstones. The good news is I can lower

prednisone to 2.5 one day and then 5 the next if LFT's are OK. Labs are

pending. MCV is a top notch transplant facility for livers. You are in good

hands. I live in Richmond but chose to go to Charlottesville UVA as I have

had some good results with them in the past over other health issues. My

prayers are with you. Good luck and let us know how things progress. Maybe

while your here in Richmond we could meet?

[Guest guest]

Hi Randy...

Boy am I confused...there is 2 other Randy's here...one already had his tx....his wife was the LTD...and the other Randy just had his first ERCP...so when I was reading yours...I was really getting confused...but I guess there are 3 Randys...

OK..now that I have that figured out....

I have read all the emails from you this week...it seems that you have a potential donor...hope his tests all go well...and that everything works out for you...

I will be looking for updates with you and your donor....

Luanne Ty's mom

[Guest guest]

,

I am on the liver transplant list at MCV in Richmond.

They are great people and they have excellent results in the transplants. At

times it will seem that they are moving slow, but they just want to be sure

of everything.

I have a young man in my church who is being tested the week of April 15-19

to see if his liver is big and healthy enough for a live transplant.

If you need any input for a fellow liver patient feel free to write me.

God Bless, Randy

[Guest guest]

Luanne,

Let's make it more confusing, my name is Randy and I am on the Liver

Transplant List at MCV in Richmond.

I am currently having a friend in my church being tested for a Live Donor

Transplant (test are April 15-19).

So now that you are totally confused, I will keep you updated and if I can

ever give you some feed back, please feel free to write.

God Bless, Randy