Re: reply H-Pylori

[Guest guest]

Hi Barbara,

I wish someone had mentioned that I'd been biopsied for h-pylori instead of

some other dread condition. But, they found nothing and now I'm wondering

just what's going on with my left side. Pain's getting worse again and now

running down my mid-section to my naval. That's new tonight. Funny, it

doesn't hurt during the day. At least, not much.

I also was only sick for a few weeks before I was diagnosed, but I was

luckier than you. They were talking transplant in positive terms then I

did a turnaround. It's a terrible shock to go from believing that you're

basically healthy and vigorous to learning that you have a potentially very

dangerous condition.

I was a laugh a minute while I was in the hospital. I was too sick to know

I was sick! Probably brain fog, but I wouldn't have known that. I said

and did some spectacularly dumb things. Told Bob to do something about the

dog's barking - we don't have a dog - and told my nephew to quit spending

all of his money on tattoos. He has no tattoos. As soon as I could walk I

staggered down the hall in my bathrobe, hair standing on end, so I could go

outdoors to have a cigarette. Me and one of the hospital maintenance men

became great buddies during those sojourns. I have no recollection of

reading anything, watching TV, or talking to anyone on the phone though I

must have done some of that during those 5 days. Crazy, isn't it? And, I

felt no pain at all. Not even sick. Just goofy.

You've pointed out the insidious thing about AIH and most autoimmune

diseases. They don't get cured. We can have our periods of relative good

health, but it's like having a load of bricks suspended over our heads on a

thin rope. You never know when it's going to fall. Maybe never, maybe

any time. How can anyone live a normal life with that kind of spectre

haunting them?

One of the things that keeps me in a constant state of anxiety is the

knowledge that a damaged liver causes other organs to function improperly,

so even if we can put the progression of liver failure at bay, other things

can be going wrong and we won't know until it happens. Then there's that

other ugly - the fact that we're all prone to additional autoimmune

diseases. We'd go crazy if we thought about the possibilities all of the time.

How are you feeling? You've mentioned a couple of things that sound like

it's not entirely smooth sailing. Is your transplant good and stable and

are you considered basically out of the woods as long as you take your meds?

Take care,

Geri

[Guest guest]

Hi Geri,

I would have been thoughtful of the docs to mention

that they were doing a biopsy for h-pylori or not say

anything at all until the results were in...at least

that's what I prefer. It's just additional

unnecessary stress.

I'm sorry to hear about the pain that you and some of

the others are having. It's not fair that the doctors

don't seem to want to address it. We know they hear

these complaints from other liver patients, makes me

wonder why they seem to ignore it.

I love the tattoo bit, I have to laugh every time I

picture the expression on your nephew's face<g>. It's

amazing how we were both in crisis yet walking,

talking and laughing and feeling so good. I was that

way up to the time of my transplant.

I have no idea what I said (as usual) to make you

think something wasn't copasetic regarding my

transplant. I'll never be home free though.

Something can go wrong at any time, but the way I see

it a perfectly healthy person has no guarantees that

they'll be around tomorrow. I just focus on the

positive and live my life for today. Since I've been

pred free 2.5yrs., my quality of life has improved

dramatically. But, I know people who thrive on it and

fight to stay on it. It just didn't agree with me.

It made me very sad to read about Dianne A's friend

who died of complications from Wegener's. I had never

heard of it, so I checked it out. Talk about

insidious!

It makes my brain scream......WHAT NEXT?

I wanted to ask you if you've found an alternative to

the fosomax. My mom uses the miacalcin nose spray and

so far no negative reaction. I would add that she

also takes a calcium supplement.

I hope the pain decides it doesn't like you any more

and takes a permanent holiday.

TTYL,

Barbara Ann

AIH Transplant Recipient

_____________________________________________________________

[Guest guest]

Barbara,

Bob was in a state of serious anxiety when I had the endoscopy for some

reason though he was assured by everyone including me that it was no big

deal. After it was over, my doctor talked to him and Bob totally blanked

it out. All he can remember was that the doctor told me to keep taking

Prilosec and to make an appointment to see him. He didn't even remember

that I'd had a biopsy! That night he said, " oh, by the way, the doctor did

a biopsy. " HUH??????? Bob had no recollection at all of why a biopsy was

done. The next day the doctor's office called to tell me that they'd have

the results back by Friday or Monday (endoscopy was on Wednesday). But,

Bob took the call and didn't think to ask why the biopsy was taken.

Finally Friday they called with the negative results and when I asked, his

nurse told me that it was a biopsy for H-Pylori.

Now, I'm having a new pain, fairly sharp, down my mid-section to my navel.

I mentioned it to Bob for the first time tonight and he said, " well, the

doctor did say that you have gastritis. " Bob forgot to tell me that, too.

To explain, Bob's far from uncaring. He's a little too anxious about my

health. I tend to not mention pain or feeling sick to him or even to my

doctor most of the time, so when I do say something he goes into

semi-panic. Which is one of the reasons I usually don't mention pain or

other problems.

About the pain, my doctor doesn't brush it off at all -possibly because I

generally tell him I'm feeling " fine " no matter how I'm feeling. So, when

I did tell him that I was bothered by left-sided pain, he ordered a

colonoscopy. In fact, I've been scheduled three times and cancelled it

each time. The new pain worries me so I'm going to have to go through with

it this time, but not until we get back from Oregon. Probably not until

the end of September. We're leaving on the 25th. and will be gone a couple

of weeks. Of course, if something extreme happens, I'll do the right

thing, but there's no blood and the pain is worse at night and seems to be

relieved by food which implies a possible ulcer or maybe increased

gastritis. I don't have diarrhea or enough nausea to even think about it,

but I don't eat anything all day (except a very light breakfast) and we eat

dinner late at night which is probably why the pain is worse at night

before dinner or several hours after dinner, like right now.

For the first few weeks after I got out of the hospital I took my nephew

with me everywhere I went because I was doing things like leaving my wallet

at the check stand in the grocery and forgetting our phone number when I'd

go to Blockbuster to rent a video. I was in pretty good humor all of the

time though I looked like death warmed over. Funny how little I remember

about those first few weeks after I got out of the hospital. It must have

been the meds because I didn't have that problem pre-pred and Imuran.

I thought that you mentioned some elevated labs? Also pedal edema? I know

that the doctors don't seem to react strongly to edema, but it's not a

natural condition and to me, it means something's cockeyed. In many ways,

I have more fear of a transplant than I do of AIH. It's like the last

resort and if that doesn't work, what next? Yeah, I know. Another

transplant. I've heard that people generally feel better post-transplant

but I thought I felt fine until just before I was hospitalized.

I'm not taking Fosomax or an alternative yet. I see the new Internist next

Wednesday and I'll discuss it with him, but I'm definitely going to ask for

the spray. I haven't had any oral/dental problems so far, but from current

discussions, I shouldn't push my luck. Also, I'm having a LOT of back and

leg pain all of a sudden. It takes me at least 2-3 hours now to get

functional after I wake up, because of the pain, grogginess and fatigue.

Why now, I wonder? My labs just two weeks ago were really very good. My

meds have been at the same level for months - just 5 mgs. of pred and still

50 mgs. of Imuran. No big stress. No big nothing. I'm really

treasuring this remission thing and intend to keep it permanently come hell

or high water!

Take care,

Geri

[Guest guest]

Thanks Leona I will try that. Can anyone give me some info. on

Rhuemotolgist what exactly is there purpose?

Pa.