Re: More Transplant Anxiety

[Guest guest]

Hi Geri,

From my experience here in NY, yes I got the letter from the HMO officially

letting me know they will pick up the cost. Next, i really don't know how

things work function on the west coast, but here in NYC or maybe other

places they take people on how serious they are. If your lying in the

hospital u will be sure to get one urgent if not depending on the amount of

people that donate organs u have to wait.. It's a good idea to find out in

that area how many people donated or how many transplant were performed.

Here in New York City 242 people received a liver transplant last year.

Meanwhile u have over 5,000 people on the list, so for alot of people it is

not availible...

Another factor to consider what stage u are in. Stage 1, stage 2a or 2b or

3, one being in the hospital and needing one and three to the point u are

in remission and liver functions ok. the a and b separates because of the

fact of how many more complications are coming about. If your going to the

hospital often. I mean it's alot of stuff. Right now i'm in stage 3 moved

up from 2b. Yes you still stay on the list. Remember u are going through

remission, I mean it's not positive, and i for one wish it never happens

but I've gone through it at least four times so the possiblities of me having

a relapse is up there. I really don't know the answer 2 if u turn it down.

In my opinion, i believe that they have a life for u, and the organ they

have has to be a match. It depends on blood type and few other factors. The

decision is yours.

Here in MT. Sinau hospital they are also doing liver sharing, in which they

take a piece of liver from a living individual and give it 2 u.. Only a few

hospitals are doing that, but so far so good. I HOPE that i answer some of

your questions, but that is how they operate here in NYC, so u have to ask

your transplant team these questions to double check..

lol\

miguel

nyc.

[Guest guest]

Geri and Bob Spang wrote:

> From: Geri and Bob Spang <spangs@...>

>

> I've been on the transplant list for more than a year. The waiting period

> is generally 2 to 2 1/2 years, I was told. Does this mean that, although

> I'm in remission, I continue to move higher on the list? What if I'm doing

> well (still in remission) and my " number " is up?

I think the 2 to 2 1/2 year wait is either an average or median waiting time. I

don't believe that simply being on the list for a period of time will

automatically get you a liver. As long as there are people ahead of you on the

list in much worse condition than you are I wouldn't think would get a

transplant.

[Guest guest]

Hey Geri,

Just want to add that i met a few people that told me that they didn't

realize that they had a liver disease until they mention they had passed out

and woke up with a new liver. So i believe their is an exceptions that are

made, and i guess that the matches they look for when doing a transplant, so

that the body doesn't reject it as much i guess. I do believe blood type is

a must.

I have to cousins of mine with lupus, one in Puerto Rico and a another here.

My cousin here wants to give me here liver because she keeps talking about

how she is not doing so good. She needs a Kidney transplant, having problems

with her lungs. She is about 2 years older than me. 35.

I do hear is good to be on the list because if the day comes that you need a

liver and someone else needs one and they only have one then they have to

give it by senority as to who has been on the list longer. It's kind of

depressing to hear how some transplant teams operate but it is the truth.

Depending on your size, as far a body is concern i would need a whole liver i

believe, but for some people who are smaller they can share a liver with

someone else. The Liver will grow or regenerate itself.. Why can't it do it

with the scarring i wonder. OH well!

Another thing which is great about having this group, is the fact that u

learn from other people. I have an appt. well the doc has to squeeze me

in, he is always busy but i get squeeze in instead of waiting for a month or

two for an appt. I'll ask him about what stage am i or maybe i get it from

my transplant team in anyway i will ask, then about budensone, aih stage,

i had already 4 relapses so it must be bad especially with biopsy and being

on the list, so it must not be all that good. I just hope that this summer

goes great, that i get no relapse, lose the weight and ride. I never

mention that I work in a Lifeguard School and like all summers I supervisor

the borough of Brooklyn, the beach and pools, Coney Island, Brighton Beach

and Manhatten beach. Then I go out to the pools make sure that Lifeguards

are doing there job not fooling around. So it gets pretty busy especially if

it gets hot. I had to stay home a couple of summers before, because of the

relapse felt so fitigue, I have enough time in my sick bank, been working 15

years so everything is good.

Well until later

AIH

nyc

[Guest guest]

,

I don't know if I'm irritated or relieved that my insurance company

neglected to send me the official letter confirming that I'm on the

transplant list. Maybe they hoped that I'd just disappear and save them

some work. I was told yesterday, however, that the letter is in the mail

so I should get it tomorrow.

As far as I'm concerned, I am happy to stay on low priority or even NO

priority for transplant. On the other hand, I have a hunch I might feel

differently if I started getting seriously ill again. As I recall, when I

was first told that I had to be evaluated for a transplant, I thought of it

as a death sentence. I knew nothing about AIH or even liver disease in

general, and even less about transplants. Amazing how something like this

can change your life and your attitudes, isn't it?

I know that there is a horrible discrepancy between the number of people

who need transplants and available organs. I'm just going to have to stay

on the bottom of the list, but I wish I had a better idea of what my

medical situation will be if I have a relapse.

I had stage 3-4 AIH when I was diagnosed and stage IV (scale of I to IV)

cirrhosis. I was also diagnosed with end-stage cirrhosis/liver disease.

But, my labs have steadily improved. I keep hearing that doesn't

necessarily mean anything but I'm hoping that in my case it does. Two

things worry me. The ascites that keeps getting worse and is not

responding to diuretics and the abdominal pain I have. Not severe, but

there's no question that something is going on. I read somewhere that

cirrhosis can't exceed 80% without becoming life threatening. I don't know

how they measure that though.

I thought that the liver was the one organ that doesn't have to be a

perfect match donor to recipient? Or, is it just that they want to have

everything exactly right when they do a transplant so give priority to

matches? I can't get over the fact that you have to basically be in

excellent health to be eligible for a transplant (except for the liver, of

course.) In fact, someone told me that the reason they do the

pre-transplant evaluation right away is so they'll be able to show that the

candidate is in good health so he or she will be eligible. My primary

Hepatologist sends me to a specialist if I hiccup, I sometimes suspect,

just to make sure that I won't develop some other condition. They found

something or other when the did the Thalium (?) EKG and insist that I'll

have to have an angiogram to rule out some heart problem even though

they've told me that for anyone else who isn't a transplant candidate, they

wouldn't worry about it. They've also immunized me against diseases that

I've never heard of. Not surprising that I haven't had a bad cold for more

than a year.

A couple of days ago my husband's niece called. I scarcely know her, but

she asked me about my AIH and I explained how it works. When she asked

about transplants I mentioned the living donor transplants that are

beginning to be done and she immediately began to offer to give me part of

her liver. I know that she was just having a burst of amazing generosity,

but I quickly told her that although I was deeply grateful, I would never

dream of asking her to give me part of her liver. (She's a very young

woman.) On the other hand, my husband says that I can have half of his

liver any time I want it if I promise not to describe the procedure or make

him look at pictures. I told him that he's got enough to worry about,

taking care of his own bod, without trying to give part of it to me.

Thanks , for the information. I'm beginning to have a better idea of

how things are supposed to work.

Take care,

Geri

[Guest guest]

Barbara,

Well, no one is going to drag me kicking and screaming into the OR to force

a new liver on me, that's for sure. I'm guessing that those who are on the

list but in remission, remain on the list but hover towards the bottom.

However, if someone has been waiting for several years and becomes critical

and needs an immediate transplant, I wonder if they still have to wait as

though they just got on the list? I have lots of questions for the

transplant coordinator next time he calls.

Thanks for the info.

Geri

[Guest guest]

Geri,

I read that you have abdominal pain. I ahave the usual pain in my side,

but I also havepain in my lower abdomen, a lot more bloating thatn I ever had

before, and sometimes I feel so full I have the urge to squat like I'm having

a baby! Could this be from the ascites that you were describing? What is

ascites like?

Thanks!

Tami

[Guest guest]

Tami,

Most of my pain has been in my left side. Ascites is accumulation of fluid

in the abdomen but there is a medical explanation for it and it definitely

goes with liver disease. Apparently some have worse problems than others,

but my arms are still so slim that my wristwatch slips around, while my

tummy feels like a bag of water sitting on my lap. That's ascites! I hate

it but I've never gotten rid of it for more than a year. The pressure you

feel could be from the extra fluid in your abdomen but maybe not. Have you

told your doctor about it? I don't feel pressure like you describe, or at

least not painful pressure. It's like the worst bloating imaginable, in

my experience. I think that the left-sided pain I have is caused by fluid

but my doctor, ever cautious, wants to do a colonoscopy just to be sure

it's not something else ugly like colon cancer. Since the pain went away

when I lost a lot of the edema recently, it seems to indicate to me that it

MUST be fluid. Mine moves around and sometimes I feel it mid-section and

lower but I had aches and pains before I had AIH and I probably would if I

was perfectly healthy. My Mom used to call them growing pains. I'm

definitely growing, according to my scales. It's always best, though, to

let your doctor know if something feels not right or if the pain becomes

severe. Also, watch out for any sign of rectal or other bleeding.

Gee, listen to me giving advice like I know what I'm talking about?

Take care,

Geri

[Guest guest]

,

Your cousin sounds like a wonderful person, to be thinking about you when

she has so much to deal with herself. Sometimes it takes life's " worst "

crisis to bring out the best in people.

I'm a listed organ donor, or at least that's what's on my driver's license.

So was my Dad but I didn't know it until after he died. He wore a chain

around his neck with a tag saying that he was a donor and yet the mortuary

who initially picked him up when he died didn't bother to tell me about it.

It must have been important to him or he wouldn't have bothered to have a

medallion made.

Recently I talked to a long-lost cousin who told me that when her teenaged

son was killed in an auto accident many years ago, she donated all of his

organs to Loma Hospital near Barstow, California. She said that he

was one of the first multi-organ donors in that hospital's history and

there's a plaque on the wall dedicated to him. She feels very good about

knowing that the loss of her son at least gave life to others. The

proposed federal regulation requiring physicians to ask the families of all

potential donors about donating sounds good but I wonder how difficult it

would be to implement. Our oldest son died in late 1997 but he died in

Mexico. He had Lou Gehrig's Disease but most of his organs were strong and

healthy.

I wonder how often potential donors are simply overlooked? The last thing

that would occur to a family during a time of intense grief would be to

offer organs for transplant. Someone has to bring this up to them though

I'm sure that it would not be an easy job for those assigned the task.

<< I do hear is good to be on the list because if the day comes that you

need a

liver and someone else needs one and they only have one then they have to

give it by senority as to who has been on the list longer. >>

That was also my understanding but I wasn't sure about it. I hope to never

use my " place " but like all of us, I'd like to know that I'd at least have

a chance if my status were to change.

Since you're on the " list " , you undoubtedly do have somewhat advanced AIH.

Remission is a wonderful relief, though, isn't it? Imagine being

unrelentingly ill all of the time, year in and year out. I worry about

relapses sometimes but now I've decided that I simply won't have one. Mind

over matter. Ha!!

I think that you're doing great. Amazing that you are managing to lead

such a full life despite all you're dealing with. Believe me, you're an

inspiration. I hope that all your wishes for this summer are granted and

that you never have to go through another relapse.

Take care,

Geri

[Guest guest]

Geri,

I really think you would have much less fluid retention & ascites if you cut

out things like popcorn and barbequed ribs (fat, presumably with salted

barbeque sauce). Also, your husband is taking Zocor. The recent drug of

choice is Lipitor, which is what I am taking. It is amazingly more

effective on all counts: HDL, triglicerides, overall cholesterol, LDL, etc.

Most doctors havn't got the word yet. Have your husband ask the doctor to

put him on it. See the book " Pills That Work, Pills that Don't " by Bosker.

Re: [ ] More Transplant Anxiety

> From: Geri Spang <spangs@...>

>

> Tami,

> Most of my pain has been in my left side. Ascites is accumulation of

fluid

> in the abdomen but there is a medical explanation for it and it definitely

> goes with liver disease. Apparently some have worse problems than others,

> but my arms are still so slim that my wristwatch slips around, while my

> tummy feels like a bag of water sitting on my lap. That's ascites! I

hate

> it but I've never gotten rid of it for more than a year. The pressure you

> feel could be from the extra fluid in your abdomen but maybe not. Have

you

> told your doctor about it? I don't feel pressure like you describe, or at

> least not painful pressure. It's like the worst bloating imaginable, in

> my experience. I think that the left-sided pain I have is caused by fluid

> but my doctor, ever cautious, wants to do a colonoscopy just to be sure

> it's not something else ugly like colon cancer. Since the pain went away

> when I lost a lot of the edema recently, it seems to indicate to me that

it

> MUST be fluid. Mine moves around and sometimes I feel it mid-section and

> lower but I had aches and pains before I had AIH and I probably would if I

> was perfectly healthy. My Mom used to call them growing pains. I'm

> definitely growing, according to my scales. It's always best, though, to

> let your doctor know if something feels not right or if the pain becomes

> severe. Also, watch out for any sign of rectal or other bleeding.

>

> Gee, listen to me giving advice like I know what I'm talking about?

> Take care,

> Geri

>

>

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[Guest guest]

Hi ,

You're absolutely right about the popcorn, though I've only had been

craving it (and eating it) this past week and I've had the ascites problems

for 15 months! We've only had ribs twice this year and we trim all of the

fat from the ribs before smoking them (a Kansas City recipe). But, I

agree, salt can definitely be a culprit. Generally, we use virtually no

salt or prepared foods when we cook, using herbs and spices instead,

European style. Also, I know that salt can be " sneaky " and foods or drinks

that might seem healthy can be loaded with sodium (like V8 juice). Tonight

we had a frozen curried rice dish we bought from a health food market, with

Chicken Vindaloo, also low salt, using curry powder and spices instead. I

bake my own dinner rolls and a recipe for 15 rolls only uses 1 tsp. of salt

and flour that we buy by mail order from King Arthur's. Otherwise, my

entire intake for the day has been a glass of Minute Maid " fresh " orange

juice without concentrates supposedly, a slice of toast and 2 Fig Newtons.

Tonight I'm swollen as much as usual. Some days when I'd expect to have

more fluid retention, I actually will drop 2-3 lbs. I think that ascites

can be affected by more than just salt but perhaps also fluids because I do

drink a lot of bottled water. We have a water purifying system and that

kind of water is loaded with salt so we don't use it for drinking, just for

cooking and the cats.

My husband just had all of his meds changed around and one of the only

drugs his doctor retained was Zocor. However, we're planning on going to

Scripps Cardiovascular Disease Clinic as soon as he can get in to see the

doctor there. The Medical Director there, who has seen Bob in the past, is

listed in the " Best Doctors in America " and is a Fellow of the Council of

Clinical Cardiology of the American Heart Association. We hope that he will

see Bob again and if not, will refer him to one of the cardiologists at

Scripps. I wouldn't be surprised if his medications aren't changed yet

again after that. It's hard to keep up with the new meds that come out and

sometimes it's not a good idea to shift from drug to drug too rapidly.

Thanks for letting us know about Lipitor. Have you had good results? I'll

put it on the list of things Bob is going to ask his cardiologist about.

Bob's cholesterol levels and blood pressure have been absolutely perfect

since he started taking Zocor but that didn't seem to prevent his heart

attack last week - which unfortunately seems to have been caused by some

kind of venous stenosis instead of a blockage.

Seems there is always something to worry about. If we let it, health

matters can take over our lives and we end up having almost no quality of

life at all. We try to ride down the middle road, having seen that no

matter how careful we are, something totally unexpected can happen and all

of the years we might have spent in anxiety and being ultra-careful will be

meaningless.

Take care,

Geri

[Guest guest]

Geri,

Wow, what a fast response. At 7:40 am eastern time. If you live in Las

Vegas, it must be about 4:40 am there. I didn't get clear what you guys do.

Do you live in Las Vegas and commute to California for your medical care?

We are in Manchester, N.H. and don't feel our gastro has enough experience,

but recently saw a supposedly " world renouned " hepatologist " in Boston but

found the consultation to be an anti climax. More a " feel good " session to

tell us our local guy is doing everything right. We still don't buy that.

Re: [ ] More Transplant Anxiety

> From: Geri Spang <spangs@...>

>

> Hi ,

> You're absolutely right about the popcorn, though I've only had been

> craving it (and eating it) this past week and I've had the ascites

problems

> for 15 months! We've only had ribs twice this year and we trim all of

the

> fat from the ribs before smoking them (a Kansas City recipe). But, I

> agree, salt can definitely be a culprit. Generally, we use virtually no

> salt or prepared foods when we cook, using herbs and spices instead,

> European style. Also, I know that salt can be " sneaky " and foods or

drinks

> that might seem healthy can be loaded with sodium (like V8 juice).

Tonight

> we had a frozen curried rice dish we bought from a health food market,

with

> Chicken Vindaloo, also low salt, using curry powder and spices instead. I

> bake my own dinner rolls and a recipe for 15 rolls only uses 1 tsp. of

salt

> and flour that we buy by mail order from King Arthur's. Otherwise, my

> entire intake for the day has been a glass of Minute Maid " fresh " orange

> juice without concentrates supposedly, a slice of toast and 2 Fig Newtons.

> Tonight I'm swollen as much as usual. Some days when I'd expect to have

> more fluid retention, I actually will drop 2-3 lbs. I think that ascites

> can be affected by more than just salt but perhaps also fluids because I

do

> drink a lot of bottled water. We have a water purifying system and that

> kind of water is loaded with salt so we don't use it for drinking, just

for

> cooking and the cats.

>

> My husband just had all of his meds changed around and one of the only

> drugs his doctor retained was Zocor. However, we're planning on going to

> Scripps Cardiovascular Disease Clinic as soon as he can get in to see the

> doctor there. The Medical Director there, who has seen Bob in the past,

is

> listed in the " Best Doctors in America " and is a Fellow of the Council of

> Clinical Cardiology of the American Heart Association. We hope that he

will

> see Bob again and if not, will refer him to one of the cardiologists at

> Scripps. I wouldn't be surprised if his medications aren't changed yet

> again after that. It's hard to keep up with the new meds that come out

and

> sometimes it's not a good idea to shift from drug to drug too rapidly.

> Thanks for letting us know about Lipitor. Have you had good results?

I'll

> put it on the list of things Bob is going to ask his cardiologist about.

> Bob's cholesterol levels and blood pressure have been absolutely perfect

> since he started taking Zocor but that didn't seem to prevent his heart

> attack last week - which unfortunately seems to have been caused by some

> kind of venous stenosis instead of a blockage.

>

> Seems there is always something to worry about. If we let it, health

> matters can take over our lives and we end up having almost no quality of

> life at all. We try to ride down the middle road, having seen that no

> matter how careful we are, something totally unexpected can happen and all

> of the years we might have spent in anxiety and being ultra-careful will

be

> meaningless.

>

> Take care,

> Geri

>

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

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[Guest guest]

I hate prednison. It does so many weird things to your body. I had to take

60 mg for almost a year and now i am finaally off of it. I am so glad. It

will take me a while to loose all the weight I have gained from it.

I told my doctor I would never take it again.

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sat, 8 May 1999 13:11:42 EDT

>

>From: Chollyfam@...

>

>Geri,

>

>I told my GP about it. He did an ultrasound, but basically didn't find

>anything. Really didn't have a clue. Basically said I had to live with

>it.

>It's been low on my priority list, but I guess I should mention it to my

>specialist. I go again on Monday. Kind of dreading it because my GP did a

>test for Rheumatoid arthritis; came back negative, but my FANA was

>extremely

>elevated. Afraid I am going to have to raise my prednisone again. : ( I

>hope not, but I guess it may be a necessity. Thanks for talking with me;

>it

>helps a ton!

>

>Tami

>

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[Guest guest]

Geri,

I told my GP about it. He did an ultrasound, but basically didn't find

anything. Really didn't have a clue. Basically said I had to live with it.

It's been low on my priority list, but I guess I should mention it to my

specialist. I go again on Monday. Kind of dreading it because my GP did a

test for Rheumatoid arthritis; came back negative, but my FANA was extremely

elevated. Afraid I am going to have to raise my prednisone again. : ( I

hope not, but I guess it may be a necessity. Thanks for talking with me; it

helps a ton!

Tami

[Guest guest]

I was on it for about a year and it took them almost two years to ween me

off of it.

One time they took my down a dose to fast and my body hurt so bad. It hurt

anyway from just little adjustments. I feel so much better being off of it.

I am on Immuran now. It works really well. I dont really feel any side

effects but i think the side effects are long term

>From: Chollyfam@...

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sat, 8 May 1999 15:19:58 EDT

>

>From: Chollyfam@...

>

>,

>

>You went from 60 mg to completely off? I was resigned to the fact that I

>would have to take it forever. It's nice to know I have the chance of

>getting off!

>Tami

>

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[Guest guest]

,

You went from 60 mg to completely off? I was resigned to the fact that I

would have to take it forever. It's nice to know I have the chance of

getting off!

Tami

[Guest guest]

I am not sure exactly what the FANA is except that it is some kind on

antibody. I used to keep up on all this stuff, but I guess I had become

apathetic. Now I am again interested in what is going on and trying to find

what kind of life I will be living. I want some kind of control back. They

aid that I don't have the Rheumatoid Arthritis because of the test, but do

duspect Lupus. It seems nvver ending. I know it's silly, but sometimes I am

justso tired of being sick! I do suspect after hearing you speak opf the

fluid retenetion, that that is what is going on with me. I have indentations

in my body anytime I wear anything that is restrictive on my body. I just

hadn't figured it out as fluid retention. I will check with my Dr. tomorrow

on the diuretics. Hope it helps, although you said they did not help the

ascites. Thanks Again for all you do for us!!

Tami

[Guest guest]

Hi ,

I totally agree with you about the prednisone. You're going to hate me for

saying this, but the bottom line is that it worked for you. I took it along

with imuran for two months and it didn't stop the damage to my liver. I had a

transplant, wound up taking it for two more years. I had all the horrible side

effects as well, including steroid arthritis. I think the only side effect I

didn't get was diabetes, although my glucose levels were slightly higher than

the norm. I recall telling the transplant surgeons how much I hated it and that

it should be illegal. They laughed and said " It is, that's why you need a

prescription to get it. " At the time, I wasn't amused and felt like punching

them in their faces. I'm a non-violent person by nature, so that gives you an

idea how nutty I was while on the prednisone. I've been off it for almost 2 1/2

years, so now I can look back and laugh (just a little). There could possibly

come a time when I might have to take it again. Right now, it's easy for me to

say NEVER, but if the tide should turn, and it becomes a question of life or

death as it is with most people who are taking it for liver disease, I will

probably start praying that it has the desired effect. I'm not going to tell

you to be thankful that it's worked for you in the past, because I fully

understand the importance of QUALITY of life. Just try to hang in, because

there are several new drugs in testing right now. I think that maybe the most

important thing we both have to focus on is not allowing any damage, or further

damage to our livers. You have my deepest admiration for the courage you have

had, to endure everything that's been dumped on you, especially at an age when

you should just be out there enjoying life and having fun. Being sick really

sucks but, life is so dynamic, in constant motion, with a little luck, the worst

things will get better. Maybe, it's just a question of time. Hopefully, not

too far in the future, at very least, we will have drugs able to control these

diseases without the drastic side effects.

In your earlier post you mentioned that you write poetry, just curious, have you

written any while you were on prednisone? The reason I ask is because my

girlfriend gave me a journal and told me to write all my feelings, happenings,

etc. I did this for several weeks, when I read it back from the beginning I was

so shocked. It sounded like the ravings of a deranged mental case. I was

afraid that someone might find it and have me committed, so I tore it up into

tiny little pieces. I wish I'd had a shredder back then. I'm curious to know

if there's a different tone to what you wrote while on steroids as compared to

now.

Stay well, we're all pulling for you.

Barbara Ann

--

--

On Sat, 08 May 1999 12:01:32 wrote:

>From: " " <teers@...>

>

>I hate prednison. It does so many weird things to your body. I had to take

>60 mg for almost a year and now i am finaally off of it. I am so glad. It

>will take me a while to loose all the weight I have gained from it.

>I told my doctor I would never take it again.

>

>

>

>>From: Chollyfam@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] More Transplant Anxiety

>>Date: Sat, 8 May 1999 13:11:42 EDT

>>

>>From: Chollyfam@...

>>

>>Geri,

>>

>>I told my GP about it. He did an ultrasound, but basically didn't find

>>anything. Really didn't have a clue. Basically said I had to live with

>>it.

>>It's been low on my priority list, but I guess I should mention it to my

>>specialist. I go again on Monday. Kind of dreading it because my GP did a

>>test for Rheumatoid arthritis; came back negative, but my FANA was

>>extremely

>>elevated. Afraid I am going to have to raise my prednisone again. : ( I

>>hope not, but I guess it may be a necessity. Thanks for talking with me;

>>it

>>helps a ton!

>>

>>Tami

>>

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[Guest guest]

,

<< Wow, what a fast response. At 7:40 am eastern time. If you live in Las

>Vegas, it must be about 4:40 am there. >>

Caught in the act - I'm guilty of being an incurable insomniac. I rarely

get to bed before 5:00 AM. Been this way for a couple of years.

We live in LV but most of our medical care is through Scripps Clinic or

Research Center in La Jolla, near San Diego. Las Vegas has grown but it's

taking awhile for the medical community to catch up with the population

growth. Those who live here and can, frequently go to California for

medical care. One problem is a shortage of specialists and

state-of-the-art diagnostic equipment. Some medical centers and

specialists have out-reach programs, where specialists travel monthly to

different Nevada locations to see patients with serious medical problems

that can't be addressed locally.

I've run into the same problem you describe, where a specialist basically

says the local doctor is doing everything right. I think that you have to

tell them definitively that you want to change from your local doctor to

the specialist. The Hepatologist from San Francisco who I originally saw

commented to me that UCSF was dealing with an " epidemic " of serious liver

disease (hepatitis) and that except for the most seriously ill, there was a

waiting period of several months. He told me that in December, 1997, and

the crisis is even bigger now, with greater awareness of Hep C. One way

that you can change your wife's primary care is to ask for a written

referral from your local doctor, though that might be awkward to do.

Scripps accepted me without that but I sent them all of my lab reports and

records when I first contacted them and my condition was very serious at

the time. Cedars-Sinai in Los Angeles wouldn't even talk to me without a

written referral from my LV doctor.

How is your wife doing? Nothing has changed in a negative way, I hope?

Take care,

Geri

[Guest guest]

Tami,

What's FANA? Rheumatoid Arthritis is another autoimmune disease and

there's always the risk of developing multiple autoimmune diseases if

you're susceptible. Osteoporosis (low bone density) can be a possible

result from long-term Prednisone use. It sounds like they're watching you

closely. When you're my age, you take it for granted that your bones and

joints will creak and groan. But, you're young and it's not time for you

to have to deal with that yet, so it's good to be vigilant about any

possible negative changes.

I also had an ultrasound recently because of the pain on my left side.

Negative. That's why my doctor wants to do a colonoscopy, but I don't

" feel " like I have colon cancer and anyhow, I asked him to do a test for

occult blood instead. Also negative. Could it be that the pressure you

feel is due to the fluid retention and the weight you aren't accustomed

to? Occasionally I also have something that almost feels like an internal

muscle spasm, like bearing down when having a baby. It doesn't happen

often and passes quickly, but it's a strange and startling sensation.

Doesn't really hurt. I used to think that me and my body had become well

acquainted but now I find that we don't know each other at all!

Take care,

Geri

[Guest guest]

Dear Sue,

I'm so sorry that you're having such a hard time of this. It seems like

you really strive to do the things that make you feel good, despite how hard

the illness makes it. Your daughter sounds wonderful, and I'm glad you have

such a valuable support. I hope the Budneside is effective for you, without

the side effects of the Prednisone.

Take Care,

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sun, 9 May 1999 00:16:30 EDT

>

>From: Roselle50@...

>

>:

>

>Welcome to the group. Yes prednesone is bad but it is about all you can

>take

>to keep you going at this time.

>

>My daughter is 15 and she has been very supportive of me since I got

>AIH

>in October of 1997. Ofcourse some days it is very hard. The predisone

>that

>really be bad. But one more day and I will be only taking the new drug

>Budneside that the Mayo Clinic gave me. I am on a study group and I

>really

>hope that this will be better for me.

>

>Again Welcome:

>

>Sue AIH

>Wisconsin

>

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>

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>

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>

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[Guest guest]

Tami

Is FANA the same as the ANA test? What do your DR's consider high? Just

curious.

Thanks

SUsie

[Guest guest]

:

Welcome to the group. Yes prednesone is bad but it is about all you can take

to keep you going at this time.

My daughter is 15 and she has been very supportive of me since I got AIH

in October of 1997. Ofcourse some days it is very hard. The predisone that

really be bad. But one more day and I will be only taking the new drug

Budneside that the Mayo Clinic gave me. I am on a study group and I really

hope that this will be better for me.

Again Welcome:

Sue AIH

Wisconsin

[Guest guest]

I really enjoy all this support.. I am so glad i joined this list. I am not

taking prednisone anymore just immuran... I like it a lot better..

I have to get another liver biopsy in a couple months. I really hate

getting this done..

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sun, 9 May 1999 00:16:30 EDT

>

>From: Roselle50@...

>

>:

>

>Welcome to the group. Yes prednesone is bad but it is about all you can

>take

>to keep you going at this time.

>

>My daughter is 15 and she has been very supportive of me since I got

>AIH

>in October of 1997. Ofcourse some days it is very hard. The predisone

>that

>really be bad. But one more day and I will be only taking the new drug

>Budneside that the Mayo Clinic gave me. I am on a study group and I

>really

>hope that this will be better for me.

>

>Again Welcome:

>

>Sue AIH

>Wisconsin

>

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

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>

>Answer: ONElist. Check out our homepage for details!

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

>Please support the American Liver Foundation!

>

>

>

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[Guest guest]

Susie,

FANA is fluorescent antinuclear antibodies. I think it is the same as ANA or

at least similar. I am not sure what is really high. I don/thave my labs in

front of me, but mine were something like 1:420 and they are supposed to be

less than 1:65. Or something close to that, Have a happy Mother's Day!

Tami

[Guest guest]

Tami,

I know what you mean about getting sick of being sick. I've been battling

headaches off and on for days and once I wouldn't have worried about them

but now I find I wonder if there's some sinister significance. I'm also

having some dizziness, which is no doubt due to the headache I have right

now. I'm a bit reckless about my health. I take my medications and follow

direct " orders " from my doctors but otherwise I don't give much thought to

whether I should get more sleep or to my diet. I do, however, want to know

everything there is to know about AIH. The more I've learned, the less

frightening it's become.

I think that Lupus is identified through a blood test so you should know

something by the time you talk to your doctor. I certainly hope you don't

have to add that to your woes. On the other hand, I've read that sometimes

Lupus isn't easily identified. Someone online who has Lupus undoubtedly

knows more about that than I do.

If diuretics won't do you any harm and might actually help, I hope that

your doctor will let you try them. It doesn't help my ascites but it

might help you. I still get those little indentations and can tell that

I'm starting to retain fluids again when my watches, which are all too

loose, start leaving marks on my wrist. Also, edema causes my feet and

ankles to ache.

Hope you're having a good weekend.

Take care,

Geri