Liver biopsy

[Guest guest]

When you see a doctor, perhaps you should discuss anti-depressants. Many people with this disease develop depression, which is treatable. Life does NOT suck. Sometime it's very painful, but it's an incredible experience, even at worst.

harper

[Guest guest]

In a message dated 11/14/01 5:51:49 PM Pacific Standard Time, sunshinedotson@... writes:

your daughter is ill????? whats wrong may i ask????

bert.

She is disabled due to an extreme case of Chronic Fatigue Syndrome, CFIDS, for the last twelve years or so.

Harper

[Guest guest]

i am sorry to hear about your daughter......

thank you, for suggesting this.....but i can't take anti-depressants....i have tried several...and they make me vomit....so i refuse to try anymore.....i try other things...like church, meditating, and napping a lot to relieve stress; in turn gives me relief from depression......my favorite though is just having a good time with my kids......they are growing up so fast.....wow!!! i can't believe it sometimes that my oldest will be 18 in just 4 years.....

i know that you have to take the good with the bad in life.....

i know there is a light at the other end of the tunnel....

i will get there.....

thanks, and goodnight.....

bert.

[Guest guest]

i hope i didn't offend anyone, by suggesting that i thought i could be dying from this......i am sorry....

i have just felt so hopeless for so long thats all.....

i am glad that i have a dr. that is looking out for my best interests now.....

what is a "teaching hospital"??

bert.

[Guest guest]

thank you debby......

bert.

[Guest guest]

Hi bert.

ALL of us care ...this is probably the best site with the large group of members who also suffer the effects of AIH. I have 2 children, 14 and 16, and I have told them what my illness is, and why I feel so tired sometimes. They help me with cooking and cleaning and find friends mothers to transport them to various activities that I can no longer do. The fatigue is indeed overwhelming sometimes. The aches and pains that are part of this disease must just be tolerated as we really cannot take any medicines for it. I have had 2 liver biopsies and 5 ICU hospitalizations for esophgeal bleeds. I am a widow, but I fortunately have these two wonderful treasures that support and protect me. It must be difficult for you to have to deal with babies at your state of illness....perhaps you might find some family or friends who could help.

Stay with us...you will find a lot of your questions answered by those in this group.

God bless,

[Guest guest]

Hi Bert so pleased to hear from you when did you say you were having your biopsy? It is very important that you get this done I have had a few and it wasn't to bad. Get in touch when you need to. Jeanette UK AIH 98 Cirrhosis 2001

flatcat9@... wrote: Bert, I'll explain a little more about the importance of a biopsy in diagnosing AIH. My doctor is something of an authority locally (in San Francisco) on AIH. At a major HMO, he has about a dozen patients with AIH. I was extremely ill when I got to a doctor, exhibiting the classic symptoms and lab readings, and I was given a cat-scan immediately. I had a biopsy the first thing the following morning. The point I'm getting to is that, even though I showed all the signs of AIH, my experienced doctor said I should not begin treatment until he got a biopsy report. Treatment is a serious undertaking, and only a biopsy has a high enough probability of giving a definitive diagnosis. (There is no way to be 100% sure that you have AIH, but a biopsy gives very, very strong clues.) I have a friend whom I met after we became ill. She and I began to show the same symptoms at the same time. Her doctor didn't think of AIH, and she didn't get a biopsy or the appropriate treatment. Four months after I was diagnosed and beginning to recover, she was in a coma and getting a liver transplant. Don't fool around with this. Harper (AIH dx 5/00)

[Guest guest]

Bert when you feel the need to get rid of all your tension just go right ahead. I get a lot of pain and have to take regular medication for that and also for the sickness. I have 2 grown up children 27 ( shes a staff nurse) and Ruth 25 who is very happily married. Both of them no about what is wrong with me from the very begining I couldnt hide it as I was very ill in hospital and not expected to live. They both deal with it by not wanting to talk about it and pretending that there is nothing wrong with me and it is all in my mind. My husband deals with it by trying to wrap me in cotton wool and not let me do anything which is very frustrating in its own way. I am sure you will no when the time feels right when to tell them if at all go with your own feelings and do what YOU want. Jeanette UK

galye@... wrote: Bert, Please don't look at this disease as a death sentence because maybe it won't be. As for your pain I have Fibromyalgia so everyday I have to take pain medication in order to cope for the day. You might ask your doc about this. It is chronic pain and seems to go along with liver problems. Many people here complain of the same and many have fibromyalgia. No, your family and friends will not have the strength or ever understand why you feel like you do. Don't allow your family or docs to intimidate you. It is hard to be alone and have many things wrong. I have 12 other major health problems so I take 17 scripts every day. We all understand. gayle trans/6-99 ^oo^ galye@...

[Guest guest]

Harper, does your daughter also have an autoimmune disorder, or is her

illness not related?

Peggy/AI??

[Guest guest]

Bert,

No I take all the medications to help all of my medical problems I take 3 different meds for my pain. The other medications are used to help me stay alive and keep my liver happy. It is a chore since I have to take these meds twice a day. My doctors and nurses became confused when I was in the hospital in October for me taking them is routine. You mentioned you wish you could be you again, you will have to make many adjustments and we are never the same. That is not something to look bad at. You will find your way to a new you. Don't push or expect that only sets you up for disappointment. I look at this as we are now special people and strong and courageous, and we carry a special message. Relax it takes a while.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

<This is NOT a death sentence. It's simply a disease. >

I like that harper!

debby

[Guest guest]

Welcome Bert.....this is a great place to find information! THey have helped me tremendously!

debby

Re: [ ] LIVER BIOPSY

thank you very much harper.....i needed that right now.....good advice is hard to come by sometimes.....bert.

[Guest guest]

Dear bert,

Your plate is indeed full...please use this group whenever you need to vent. We are not alone with this disorder and perhaps there will be more medical advances to help us ....right now, it is best to stay on the regimen that your GI or hepatologist prescribes. Try to avoid herbal or over-the- counter meds. Those folks who have had to go to transplant recommend this. Keep your faith up and know that your body is trying to heal itself....and it will.

Liver biopsies will give you the best diagnosis and they are not painful if you ask your doc for "sedation meds" that just put you to sleep for about 30 min and you may need to stay lying in a particularly designed position (you need a drive home). We have about 200 AIH worldwide....please ask your questions.

Best regards and prayers to you, family, and all with AIH,

[Guest guest]

Hey Harper....we love you! I am so very sorry that you are not feeling so good right now! Gentle hugs, dear friend! You are so helpful to me! Sometimes our messages seem to be brusque, but the underlying message is of caring. If we didn't care, we wouldn't be here..at least that is my opinion!

I hope you feel better tomorrow!

debby

Re: [ ] LIVER BIOPSY

In a message dated 11/14/01 6:45:49 PM Pacific Standard Time, sunshinedotson@... writes:

i hope i didn't offend anyone, by suggesting that i thought i could be dying from this......i am sorry.... i have just felt so hopeless for so long thats all..... i am glad that i have a dr. that is looking out for my best interests now..... what is a "teaching hospital"?? bert. I don't think you could have offended anyone by anything you wrote. We're sorry you're having so many things to deal with, all at once. And, I'm sorry to say, people do die from this. That's the way it is. Most don't, especially if they have access to medical care. Most of us have, I think, quite a few aches and pains, and it's especially difficult for us to deal with them because we don't usually know where they come from or when/if they will go away. I hope my suggestion about anti-depressants wasn't brusque. I realized afterwards that I should have written it differently. Right now I'm rather uncomfortable physically, and the resulting tenseness may be, unfairly, reflected in my messages to the group. Harper

[Guest guest]

thanks gayle.....i will relax.

ohhhh..and i am a candle freak..hahaha...i light them in the middle of the day or early morning.....to destress...

my dr. appt. with my new intern is tomorrow....he already knows my situation and that i am coming in on an emergency basis and will refer me to a GI. immediately!!! just gotta get that DARN PAPERWORK and INSURANCE together 1st !!!!!!! you all know the drill i m sure......

otherwise i wouldn't be getting in until FEB!!! no thanks,

ummm....not waiting that long!!!

i want to get in, have a biopsy and get treatment right away....

i do hear ya about living for today...i will try harder.....thanks for the pep talk everyone.....i sure needed it!!!!!!!!

you all are great......

ttyl....bert.

[Guest guest]

In a message dated 11/15/01 6:37:49 PM Pacific Standard Time, scott_p@... writes:

Harper, I like that... springing a leak! gotta have a sense of humor!

Patty

We're basically just one big fancy plumbing job, anyway.

Harper

[Guest guest]

Bert,

I was diagnosed about 15 months ago, and had a bit of a vent a few

weeks ago. Harper said something to me that really made sense to me

it went something like this...

We are the same person we were before, we are also a different

person than before...

There are cetain things that I've learn about myself and about life

that are completely positive and I wouldn't give them away for

anything now. Sometimes I talk to people and I think.. you don't

have a clue about what life is really about, or how strong a person

you really are.

Good luck with your biopsy it will be ok.

(age 22 London UK)

[Guest guest]

Harper, I like that... springing a leak! gotta have a sense of humor!

Patty

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Wednesday, November 14, 2001 2:53 AM Subject: Re: [ ] LIVER BIOPSYIn a message dated 11/13/01 11:23:24 PM Pacific Standard Time, TREE-P@... writes:

well i am finally getting it done ist thing monday morning nov, 19th almost 2 1/2 months since my ist liver blood tests came back abnormal i am very nervous any words of wisdom or feedback would be appreciated thanks theresaRelax; for most people it's no worse than uncomfortable. Arrange for someone to drive you home afterward and to avoid exertion for a couple of days to avoid springing a leak at the biopsy site. Take a book with you, and use the bathroom before the biopsy, as you'll have to lie still for a couple of hours afterwards. Good luck, and congratulations on getting the biopsy appointment. Harper

[Guest guest]

Joanna,

It bothers me to not be able to do what I use to do either. Coming from a very physical busy person that I was to this sucked and has taken me so much time to deal with. I loved tearing my house apart to clean it spotless and go through things now I am lucky to get my bathroom cleaned in a day. The energy does limit you but now I just go take a nap or watch a movie.

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Gayle,

Thank you for this. I think the one thing that bothers me the most

is not being the person I was before I became ill. I get so

frustrated at times because I cannot do all the things I used to do

and want to do. The adjustment is hard and I am trying.

Hugs,

Joanna

AIH 8/01

-- In @y..., galye@a... wrote:

> You mentioned you wish you could be

> you again, you will have to make many adjustments and we are never

the same.

> That is not something to look bad at. You will find your way to a

new you.

> Don't push or expect that only sets you up for disappointment. I

look at this

> as we are now special people and strong and courageous, and we

carry a

> special message. Relax it takes a while.

>

> gayle trans/6-99 ^oo^

> galye@a...

[Guest guest]

Joanna. I thought that I just needed some extra vitamins because I'm tired alot. After reading and hearing about others I guess it comes with the territory. I hate feeling tired all the time. I'm like you in a way. Very active, but now I don't seem to have the energy to get out of my own way . Take care. Ann Re: [ ] Re: LIVER BIOPSY Joanna, It bothers me to not be able to do what I use to do either. Coming from a very physical busy person that I was to this sucked and has taken me so much time to deal with. I loved tearing my house apart to clean it spotless and go through things now I am lucky to get my bathroom cleaned in a day. The energy does limit you but now I just go take a nap or watch a movie. gayle trans/6-99 ^oo^ galye@...

[Guest guest]

Joanna, I too get bothered by the fact that I can not do the things that I once did....it gets REAL FRUSTRATING at times!!!!! Just wanted you to know that you are not alone....I am sure I speak for everyone in this message....

Hang in there...

With hugs....

Bert. (AIH DX 9/01)

[Guest guest]

In a message dated 11/17/01 5:05:43 AM Pacific Standard Time, seafarer52@... writes:

Joanna.

I thought that I just needed some extra vitamins because I'm tired alot. After reading and hearing about others I guess it comes with the territory. I hate feeling tired all the time. I'm like you in a way. Very active, but now I don't seem to have the energy to get out of my own way . Take care.

Ann

Ann, please don't take "extra vitamins" for your fatigue. I don't have answers for you -- I have the same problem. However, extra vitamins can be very, very dangerous.

Harper

[Guest guest]

Bert,

Thanks for the reply, so nice to know that I am not alone in this.

This group has helped me so much and my education has really improved.

Joanna

> Joanna, I too get bothered by the fact that I can not do the things

that I

> once did....it gets REAL FRUSTRATING at times!!!!! Just wanted you

to know

> that you are not alone....I am sure I speak for everyone in this

message....

> Hang in there...

> With hugs....

>

> Bert. (AIH DX 9/01)

[Guest guest]

>

> Ann, please don't take " extra vitamins " for your fatigue. I don't

have

> answers for you -- I have the same problem. However, extra

vitamins can be

> very, very dangerous.

> Harper

Harper,

My dr has asked me to take a multivitamin a day, plus 1200 mg of

calcium w/D. Is this considered dangerous? I also have osteoporosis

and osteoarthritis.

Joanna

AIH 08/01