Re: New member introduction, *very* long indeed!

[Guest guest]

You're right, that is quite a story. You so very fortunate that your doctor had

the insight to rush you to the hospital! With Finland being so small, have you

been given

any idea how long you'll have to wait for a transplant? Good luck to you...

Jaana <jfogl@...> wrote:

Hello everyone!

I promised an introduction yesterday, so that is what I am

about to give here. But be warned - this is going to be a long

and winding story, so if you don't feel quite up to it, just

jump straight to the end! :-)

Here goes:

My name is Jaana, I am a female living in Helsinki, Finland

and am 46 years of age. I was diagnosed with AIH around 2,5

ago. I had a history of autoimmune diseases, which the doctors

say is often the case with AIH patients - in my case it was

sarcoidosis, hypothyreosis and fibromyalgia.

In the beginning of 2004 I started having odd symptoms such as

shortness of breath, increased aches and pains all over,

that sort of thing. Then came a persistent cough which just

wouldn't go away. I eventually had to go to see a doctor, who

said it sounded like asthma and was definitely not pneumonia,

bronchitis or anything like that. Some tests were run but

everything came back negative. Since the cough continued, I

was prescribed some cortisone and an asthma medication, which

helped almost instantly.

Then all was well for about two weeks, pretty much for as long

as I was taking the cortisone. After that came the pains in

the joints. My hands, especially the fingers and the backs of

the hands swelled up so badly that they must've been at least

double their normal size. The pain was almost unbearable in

pretty much every joint of my body. So, back to the doctor's,

where more tests, including x-rays and tests for rheumatism

were run, but everything again came back clear, including the

liver enzymes, which were normal. I was put back on cortisone

and some painkillers, and the pain and swelling eased up.

About a week after that I developed a weird red rash mainly on

my chest and arms. The doctors at this point began to get

really puzzled, because test results kept coming back clear.

They suspected it might have been the painkillers I was taking

and changed them. The rash then disappeared, only to be

replaced by jaundice. I just woke up one morning and was

bright yellow all over. Apart form the above mentioned, I had

been feeling quite OK all the time - I didn't have any nausea,

exhaustion (more than usual) or anything like that.

I again called the doctor who said to go to the lab first and

then go and see her. On the way there I actually did some

shopping and went to the appointment quite happily carrying my

shopping bags and feeling quite normal. Apparently I looked

rather hideous, though, because the doc took one look at me

and said: " Now don't panic or anything, but I think it might

be a good idea to call for an ambulance and send you directly

to the hospital. "

I was put on a drip and sent off to the hospital, totally

baffled. I mean, I wasn't feeling *that* sick!

At the hospital ER they run some tests and before soon came to

inform me of the fact that I was definitely not going home but

was going to be sent to the gastroenterology ward instead. My

liver ezymes, which had been normal just a few short weeks

ago, were in the thousands (among the highest they'd ever

seen, they said). They also told me that while they could not

be sure before getting the results from a biopsy, they

strongly suspected that I had something called autoimmune

hepatitis (which, needless to say, I'd never even heard of).

So, I got a diagnosis that proved to be the correct one very

quickly - I was told that there are some elements (which I

didn't fully understand and won't even attempt to describe

here) in the tests which help the doctors to make an educated

guess as to what type of liver condition it is. I was also

lucky in that I happen to live in the capital of Finland and

was sent to the University hospital, where all the complicated

cases from all over the country end up. Finland is a country

with only around 5 million inhabitants, so rare diseases like

AIH are even more rare here. Also, the head of the

gastroenterology ward is a well known expert in the field even

internationally, which I am sure didn't hurt matters, etiher.

I have heard stories from smaller hospitals where they've had

real problems finding the correct diagnosis, due to total lack

of practical experience on AIH.

Anyway, back to the story. In the hospital I was put on

Prednisone, azatioprine and cyclosporin. The biopsy showed

that 50% of my liver was necrotic and the AIH diagnosis was

confirmed. After a while it looked as if the liver enzymes

would start to go down, but then they unexpectedly collapsed

altogether. My liver function/blood coagulation percentage was

actually so low that it could not be measured anymore (under

10%). The odd thing was that while all this was going on, I

actually felt quite OK, when in fact I should've been in coma,

more or less. They even had to tell me to stay in bed and

absolutely not to bump into anything, as I would end up

bleeding internally... They also alerted the Surgical ward and

were going to send me there for liver transplant evaluation

and basically to be kept alive by some sort of machine (I've

no idea what it is in English, but it is some sort of machine

that resembles the dialyser for kidneys, but is for the liver).

Since I was feeling so good they decided to wait for a day and

try to get the values up a bit. I was given frozen plasma,

vitamin K and heaven knows what. The problem was that because

of the hypoprothrombinemia they couldn't give me as much as

they would have wanted, again for fear of internal bleeding as

the pressure in the veins would have increased.

Still, it worked, and after a couple of days the liver

function was up to a staggering 12%! :-) From then on, the

situation slowly but steadily got better, and after a couple

of months I was released from the hospital.

That was over two years ago, and while my liver seems to be

doing quite well, my general condition has drastically

decreased to the point that I am now on disability pension. I

have developed a glaucoma of the eyes, caused by the

cortisone, and an existing depression has got worse, again due

to the cortisone (and naturally this entire situation). Only

this morning I've had lots of tests taken as they now suspect

I might have Sjogren's syndrome, SLE or some other autoimmune

disease of that type.

So, it really has been an uphill struggle, and at the moment I

am feeling rather awful. It's probably mainly because my daily

Prednisone dosage is down to 5mg, so as not to cover any

symptoms of the suspected new ailments. In addition to the

Prednisone I take 200mg of azatioprine, 50mg of pantoprazole

for stomach protection and some calcium/vitamin D supplement.

I also take some thyroxin for the hypothyreosis.

Like I mentioned earlier, in a small country rare diseases are

very rare, and in Finland there are an estimated 80 AIH cases,

past and present, altogether. For people who live in smaller

cities and in the countryside it is often difficult to find

any fellow sufferers or achieve information on AIH. I have

therefore started an Internet support group for Finnish

(speaking) AIH patients. We currently have 33 members, which I

think is just great. New members are joining steadily, so soon

we'll have all Finnish AIH sufferers under the same roof, so

to speak! :-)

Well, I warned you - this turned out to be even longer than I

thought it would! A big thank you to everyone (anyone?) who

actually had the patience to read everything!

I look forward to the conversations here and hope to get lots

of new and helpful information.

All the best,

Jaana

--

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Wow Jaana! You have a lot of things going on in your poor body! I understood

the FFP (Fresh Frozen Plasma) as I have acquired Factor V deficiency - where the

liver does not make the factor V to cause clotting. So every day, I take Vit K.

For 3 days, originally, I had to give myself Vit K shots...not fun, but I did

it. Then, the hematologist gave me the oral kind, so I take it daily.

As for the FFP, whenever I have any medical procedure like endoscopy, surgery,

liver biopsy, etc...I have to have FFP before the procedures! Not fun at all.

When I had back surgery last year, I had to have 11 units over a total of 14

days that I was in the hospital. I managed to get the MRSA (hospital staph

infection) in my incision and had to have a second surgery to clean out the

incision...I was ONE sick lady for 4 months...ended up going back to work in

January and had to really be careful to not get hit by the children with which I

work.

It must have been quite frightening for your liver enzymes to go so high!

Wow...glad you are doing etter now! You are going to find lots of information

here, but it sounds to me like you are going to be SHARING information with the

rest of us....you are very very lucky!

Debby

[ ] New member introduction, *very* long indeed!

Hello everyone!

I promised an introduction yesterday, so that is what I am

about to give here. But be warned - this is going to be a long

and winding story, so if you don't feel quite up to it, just

jump straight to the end! :-)

Here goes:

My name is Jaana, I am a female living in Helsinki, Finland

and am 46 years of age. I was diagnosed with AIH around 2,5

ago. I had a history of autoimmune diseases, which the doctors

say is often the case with AIH patients - in my case it was

sarcoidosis, hypothyreosis and fibromyalgia.

In the beginning of 2004 I started having odd symptoms such as

shortness of breath, increased aches and pains all over,

that sort of thing. Then came a persistent cough which just

wouldn't go away. I eventually had to go to see a doctor, who

said it sounded like asthma and was definitely not pneumonia,

bronchitis or anything like that. Some tests were run but

everything came back negative. Since the cough continued, I

was prescribed some cortisone and an asthma medication, which

helped almost instantly.

Then all was well for about two weeks, pretty much for as long

as I was taking the cortisone. After that came the pains in

the joints. My hands, especially the fingers and the backs of

the hands swelled up so badly that they must've been at least

double their normal size. The pain was almost unbearable in

pretty much every joint of my body. So, back to the doctor's,

where more tests, including x-rays and tests for rheumatism

were run, but everything again came back clear, including the

liver enzymes, which were normal. I was put back on cortisone

and some painkillers, and the pain and swelling eased up.

About a week after that I developed a weird red rash mainly on

my chest and arms. The doctors at this point began to get

really puzzled, because test results kept coming back clear.

They suspected it might have been the painkillers I was taking

and changed them. The rash then disappeared, only to be

replaced by jaundice. I just woke up one morning and was

bright yellow all over. Apart form the above mentioned, I had

been feeling quite OK all the time - I didn't have any nausea,

exhaustion (more than usual) or anything like that.

I again called the doctor who said to go to the lab first and

then go and see her. On the way there I actually did some

shopping and went to the appointment quite happily carrying my

shopping bags and feeling quite normal. Apparently I looked

rather hideous, though, because the doc took one look at me

and said: " Now don't panic or anything, but I think it might

be a good idea to call for an ambulance and send you directly

to the hospital. "

I was put on a drip and sent off to the hospital, totally

baffled. I mean, I wasn't feeling *that* sick!

At the hospital ER they run some tests and before soon came to

inform me of the fact that I was definitely not going home but

was going to be sent to the gastroenterology ward instead. My

liver ezymes, which had been normal just a few short weeks

ago, were in the thousands (among the highest they'd ever

seen, they said). They also told me that while they could not

be sure before getting the results from a biopsy, they

strongly suspected that I had something called autoimmune

hepatitis (which, needless to say, I'd never even heard of).

So, I got a diagnosis that proved to be the correct one very

quickly - I was told that there are some elements (which I

didn't fully understand and won't even attempt to describe

here) in the tests which help the doctors to make an educated

guess as to what type of liver condition it is. I was also

lucky in that I happen to live in the capital of Finland and

was sent to the University hospital, where all the complicated

cases from all over the country end up. Finland is a country

with only around 5 million inhabitants, so rare diseases like

AIH are even more rare here. Also, the head of the

gastroenterology ward is a well known expert in the field even

internationally, which I am sure didn't hurt matters, etiher.

I have heard stories from smaller hospitals where they've had

real problems finding the correct diagnosis, due to total lack

of practical experience on AIH.

Anyway, back to the story. In the hospital I was put on

Prednisone, azatioprine and cyclosporin. The biopsy showed

that 50% of my liver was necrotic and the AIH diagnosis was

confirmed. After a while it looked as if the liver enzymes

would start to go down, but then they unexpectedly collapsed

altogether. My liver function/blood coagulation percentage was

actually so low that it could not be measured anymore (under

10%). The odd thing was that while all this was going on, I

actually felt quite OK, when in fact I should've been in coma,

more or less. They even had to tell me to stay in bed and

absolutely not to bump into anything, as I would end up

bleeding internally... They also alerted the Surgical ward and

were going to send me there for liver transplant evaluation

and basically to be kept alive by some sort of machine (I've

no idea what it is in English, but it is some sort of machine

that resembles the dialyser for kidneys, but is for the liver).

Since I was feeling so good they decided to wait for a day and

try to get the values up a bit. I was given frozen plasma,

vitamin K and heaven knows what. The problem was that because

of the hypoprothrombinemia they couldn't give me as much as

they would have wanted, again for fear of internal bleeding as

the pressure in the veins would have increased.

Still, it worked, and after a couple of days the liver

function was up to a staggering 12%! :-) From then on, the

situation slowly but steadily got better, and after a couple

of months I was released from the hospital.

That was over two years ago, and while my liver seems to be

doing quite well, my general condition has drastically

decreased to the point that I am now on disability pension. I

have developed a glaucoma of the eyes, caused by the

cortisone, and an existing depression has got worse, again due

to the cortisone (and naturally this entire situation). Only

this morning I've had lots of tests taken as they now suspect

I might have Sjogren's syndrome, SLE or some other autoimmune

disease of that type.

So, it really has been an uphill struggle, and at the moment I

am feeling rather awful. It's probably mainly because my daily

Prednisone dosage is down to 5mg, so as not to cover any

symptoms of the suspected new ailments. In addition to the

Prednisone I take 200mg of azatioprine, 50mg of pantoprazole

for stomach protection and some calcium/vitamin D supplement.

I also take some thyroxin for the hypothyreosis.

Like I mentioned earlier, in a small country rare diseases are

very rare, and in Finland there are an estimated 80 AIH cases,

past and present, altogether. For people who live in smaller

cities and in the countryside it is often difficult to find

any fellow sufferers or achieve information on AIH. I have

therefore started an Internet support group for Finnish

(speaking) AIH patients. We currently have 33 members, which I

think is just great. New members are joining steadily, so soon

we'll have all Finnish AIH sufferers under the same roof, so

to speak! :-)

Well, I warned you - this turned out to be even longer than I

thought it would! A big thank you to everyone (anyone?) who

actually had the patience to read everything!

I look forward to the conversations here and hope to get lots

of new and helpful information.

All the best,

Jaana

--

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.405 / Virus Database: 268.12.5/451 - Release Date: 9/19/2006

[Guest guest]

Hi ,

thanks for reading my " novel " ! :-)

At the moment my liver situation is so good that there is

really no need to think about the possibility of a transplant

(or at least so I like to think...). Even though my health

otherwise is not so good, which might be a bigger problem in

case I should actually need a transplant, the liver has so far

been responding well to the treatment. The plan is to keep me

on azatioprine indefinitely, probably for the rest of my life,

and gradually try and get rid of the Prednisone (which may be

impossible due to the other illnesses I have).

However, should the need for a transplant arise, the situation

is actually surprisingly good. I don't know the most recent

statistics, but in 2004 the average waiting period was 1-2

months. In acute cases, 5-7 days. I don't have the nationwide

statistics for 2005, but in the Helsinki University hospital

(where a huge majority of the transplants are carried out) the

average waiting time last autumn was 19 days.

There are several people in the Finnish AIH support list

who've had a transplant, and for each of them it seems finding

a suitable liver has been the least of their worries.

Apparently people nowadays are very well aware of these things

and many always carry around a donor's testament. According to

a recent study 4 out of 5 Finns are willing to donour their

organs.

When I was in the hospital and they started talking about

sending me to the Surgical ward, I actually asked what they

could possibly do at such a short notice. Surely it wouldn't

be possible to find a liver so quickly? Well, I won't go into

the details, but it seems that especially in the springtime

there can be more donated livers available than they can use.

Most of them come from youngsters who get carried away in the

spring traffic and crash with their bike or car, with fatal

consequences. Quite sad, really.

Good luck and all the best to you, too!

Jaana

WOOTTEN wrote:

>

>

> You're right, that is quite a story. You so very fortunate that your

> doctor had the insight to rush you to the hospital! With Finland being

> so small, have you been given

> any idea how long you'll have to wait for a transplant? Good luck to you...

>

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Hi Debby,

that really sounds painful with those surgeries and the

infection! I hope you are all recovered by now and hopefully

the back surgery was succesful!

Yes, I guess I've had quite a bit of luck along the way, even

if it doesn't always feel that way. One thing I am really

looking forward here is to hear the stories of different

people and how AIH has affected them. This is such a

complicated illness, with so many different symptoms and

problems. To make matters worse, many sufferers have other

autoimmune conditions, diagnosed or not, which just

complicates matters more.

For my part, I have noticed that my earlier happy go lucky

attitude is completely gone (you know, the " oh dear, I seem to

be quite yellow today, but let's go shopping " attitude :-) )

and I am now almost paranoid about every new symptom. Things

that I wouldn't even have noticed before now bother me to no

end. The upside of this is that I've learned a lot in the

process, trying to find out about things as much as possible.

I just wonder how I haven't bumped into this list earlier, but

better late than never, I think!

All the best,

Jaana

tdcc2000@... wrote:

>

>

> Wow Jaana! You have a lot of things going on in your poor body! I

> understood the FFP (Fresh Frozen Plasma) as I have acquired Factor V

> deficiency - where the liver does not make the factor V to cause

> clotting. So every day, I take Vit K. For 3 days, originally, I had to

> give myself Vit K shots...not fun, but I did it. Then, the hematologist

> gave me the oral kind, so I take it daily.

>

> As for the FFP, whenever I have any medical procedure like endoscopy,

> surgery, liver biopsy, etc...I have to have FFP before the procedures!

> Not fun at all. When I had back surgery last year, I had to have 11

> units over a total of 14 days that I was in the hospital. I managed to

> get the MRSA (hospital staph infection) in my incision and had to have a

> second surgery to clean out the incision...I was ONE sick lady for 4

> months...ended up going back to work in January and had to really be

> careful to not get hit by the children with which I work.

>

> It must have been quite frightening for your liver enzymes to go so

> high! Wow...glad you are doing etter now! You are going to find lots of

> information here, but it sounds to me like you are going to be SHARING

> information with the rest of us....you are very very lucky!

> Debby

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

That's a pretty good percentage of people willing to donate organs. What other

illnesses do you have? Just curious. So many of us have several medical

conditions

too. Right now, I have shingles - so I have plenty of time to read novels!

Jaana Fogl <jfogl@...> wrote:

Hi ,

thanks for reading my " novel " ! :-)

At the moment my liver situation is so good that there is

really no need to think about the possibility of a transplant

(or at least so I like to think...). Even though my health

otherwise is not so good, which might be a bigger problem in

case I should actually need a transplant, the liver has so far

been responding well to the treatment. The plan is to keep me

on azatioprine indefinitely, probably for the rest of my life,

and gradually try and get rid of the Prednisone (which may be

impossible due to the other illnesses I have).

However, should the need for a transplant arise, the situation

is actually surprisingly good. I don't know the most recent

statistics, but in 2004 the average waiting period was 1-2

months. In acute cases, 5-7 days. I don't have the nationwide

statistics for 2005, but in the Helsinki University hospital

(where a huge majority of the transplants are carried out) the

average waiting time last autumn was 19 days.

There are several people in the Finnish AIH support list

who've had a transplant, and for each of them it seems finding

a suitable liver has been the least of their worries.

Apparently people nowadays are very well aware of these things

and many always carry around a donor's testament. According to

a recent study 4 out of 5 Finns are willing to donour their

organs.

When I was in the hospital and they started talking about

sending me to the Surgical ward, I actually asked what they

could possibly do at such a short notice. Surely it wouldn't

be possible to find a liver so quickly? Well, I won't go into

the details, but it seems that especially in the springtime

there can be more donated livers available than they can use.

Most of them come from youngsters who get carried away in the

spring traffic and crash with their bike or car, with fatal

consequences. Quite sad, really.

Good luck and all the best to you, too!

Jaana

WOOTTEN wrote:

>

>

> You're right, that is quite a story. You so very fortunate that your

> doctor had the insight to rush you to the hospital! With Finland being

> so small, have you been given

> any idea how long you'll have to wait for a transplant? Good luck to you...

>

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Hi,

those shingles must be really painful! From what you described

and what I've heard it sounds absolutely awful. I do hope

you'll feel better soon!

What kind of medication are you on? Do you think the shingles

might have something to do with AIH or the medication?

Sarcoidosis at least can cause shingles, and the

immunosuppressive medication seems to make people much more

susceptible to all sorts of infections and viruses.

WOOTTEN wrote:

> That's a pretty good percentage of people willing to donate organs.

Yes, it is - but the problem is that not all of them are

carrying a donator card. While the liver situation is pretty

good, the other queues are longer.

According to the law a donator card is not absolutely

necessary - a person's organs can be used if it is not likely

that he/she would have objected. In practise, though, that

usually means that the card or some other verification is

needed as a proof of that.

However, if the person does have a donator card, the organs

can be used even against the family's will (a person's own

will weighs more).

> What other illnesses do you have? Just curious. So many of us have several

> medical conditions too. Right now, I have shingles - so I have plenty of time

to read novels!

>

" Just " the ones mentioned earlier :-) : sarcoidosis,

hypothyroidism, fibromyalgia, glaucoma and suspected Sjogren's

disease/SLE/rheumatism (I will hopefully find out in a couple

of weeks). I also suffer from depression, which cannot be

treated as most anti-depressants may affect the liver - the

Seroxat/Paxil type ones - and the newer kind that don't

(milnacipran, which is removed from the system through the

kidneys), doesn't agree with me. :-(

As you can see, almost all of my ailments are of the

autoimmune type, which I am told is typical: once you get one,

you are bound to get another. The doctor actually recently

called me a walking textbook example of autoimmune diseases. :-)

As to the symptoms, they are really varied and since most

autoimmune conditions have similar symptoms, it's almost

impossible to say what causes which. The ones I suspect to

have something to do with AIH, or the medication, are

exhaustion, occasional nausea, although I never had that when

the situation was acute, and a nasty liver capsule pain attack

every now and then.

I also have all sorts of pains and aches all over the body,

especially the back, chest and stomach area, the arms, wrists,

ankles and the scalp. Usually it feels like someone is

stabbing me with a sharp and rather thick needle, sometimes it

is more like a dull ache. Also the joints hurt every now and

then, usually one at a time and the pain kind of travels - it

can start, say, from the right elbow, move down to the knee on

the same side, hop over to the ankle on the other side and

from there on to the wrist, and so on.

My stomach is upset most of the time and I have all sorts of

headaches and pains in or behind the eyes. I have " off-days "

when I feel a bit dizzy and slightly drugged.

Quite often I am kind of sore all over - just a light, normal

touch can feel painful. My eyes and mouth are extremely dry,

as well as the skin.

Most of these symptoms are typical for Sjogren's syndrome or

SLE, the former being the strongest candidate at the moment.

So I guess I am quite a hopeless case, wouldn't you say...?

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Jaana;

These shingles are the most painful thing I've experienced. And for several

days I blamed it all on back pain. Besides this, the most painful thing I recall

was when I had appendicitis (however, with that I drove myself to the hospital

in hopes of getting pain meds so I could go in to work-much younger back then).

With the PBC I have nausea,

fatigue, Sjorgren's, osteoporosis, insomnia, some confusion, & the latest

problem is

extremely high cholesterol. This is due to the liver, too. They even have to

dilute the

blood in order to perform some of the labs because it is too fatty (I had

never heard of that before). For the past 13 months, I have not worked as the

fatigue & confusion began to be a challenge. I worked 12hr nights as an RN on an

extremely busy floor &

my job performance was beginning to decline.

Do they also do " living donors " where you live?

Jaana Fogl <jfogl@...> wrote:

Hi,

those shingles must be really painful! From what you described

and what I've heard it sounds absolutely awful. I do hope

you'll feel better soon!

What kind of medication are you on? Do you think the shingles

might have something to do with AIH or the medication?

Sarcoidosis at least can cause shingles, and the

immunosuppressive medication seems to make people much more

susceptible to all sorts of infections and viruses.

WOOTTEN wrote:

> That's a pretty good percentage of people willing to donate organs.

Yes, it is - but the problem is that not all of them are

carrying a donator card. While the liver situation is pretty

good, the other queues are longer.

According to the law a donator card is not absolutely

necessary - a person's organs can be used if it is not likely

that he/she would have objected. In practise, though, that

usually means that the card or some other verification is

needed as a proof of that.

However, if the person does have a donator card, the organs

can be used even against the family's will (a person's own

will weighs more).

> What other illnesses do you have? Just curious. So many of us have several

> medical conditions too. Right now, I have shingles - so I have plenty of time

to read novels!

>

" Just " the ones mentioned earlier :-) : sarcoidosis,

hypothyroidism, fibromyalgia, glaucoma and suspected Sjogren's

disease/SLE/rheumatism (I will hopefully find out in a couple

of weeks). I also suffer from depression, which cannot be

treated as most anti-depressants may affect the liver - the

Seroxat/Paxil type ones - and the newer kind that don't

(milnacipran, which is removed from the system through the

kidneys), doesn't agree with me. :-(

As you can see, almost all of my ailments are of the

autoimmune type, which I am told is typical: once you get one,

you are bound to get another. The doctor actually recently

called me a walking textbook example of autoimmune diseases. :-)

As to the symptoms, they are really varied and since most

autoimmune conditions have similar symptoms, it's almost

impossible to say what causes which. The ones I suspect to

have something to do with AIH, or the medication, are

exhaustion, occasional nausea, although I never had that when

the situation was acute, and a nasty liver capsule pain attack

every now and then.

I also have all sorts of pains and aches all over the body,

especially the back, chest and stomach area, the arms, wrists,

ankles and the scalp. Usually it feels like someone is

stabbing me with a sharp and rather thick needle, sometimes it

is more like a dull ache. Also the joints hurt every now and

then, usually one at a time and the pain kind of travels - it

can start, say, from the right elbow, move down to the knee on

the same side, hop over to the ankle on the other side and

from there on to the wrist, and so on.

My stomach is upset most of the time and I have all sorts of

headaches and pains in or behind the eyes. I have " off-days "

when I feel a bit dizzy and slightly drugged.

Quite often I am kind of sore all over - just a light, normal

touch can feel painful. My eyes and mouth are extremely dry,

as well as the skin.

Most of these symptoms are typical for Sjogren's syndrome or

SLE, the former being the strongest candidate at the moment.

So I guess I am quite a hopeless case, wouldn't you say...?

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Hi again,

I do hope you are feeling better by now.

So you have Sjogren's too - it seems it is very common with

people with AIH or PBC. Do you suffer from dry eyes? Mine are

sometimes so bad that it is actually quiteuncomfortable to get

them open in the morning, it feels like something is peeling

off...

WOOTTEN wrote:

> extremely high cholesterol. This is due to the liver, too. They even

> have to dilute the

> blood in order to perform some of the labs because it is too fatty (I

> had never heard of that before). For the past 13 months, I have not

When I was in the hospital there was one point where the

cholesterol values were zero, around the same time when my

liver function was below 10%. I have no idea how that is

possible and the doctor was a bit baffled as well, but it

seems it wasn't any error from the lab's part. The situation

corrected itself quickly, and so far so good. Apparently the

cholesterol is somehow produced in the liver, so it may go up

(or down?) regardless of how healthy a life we lead.

> worked as the fatigue & confusion began to be a challenge. I worked 12hr

> nights as an RN on an extremely busy floor &

> my job performance was beginning to decline.

Did you have a similar situation when you were first

diagnosed? My doctors have actually suggested that autoimmune

diseases can be triggered off by stress. I certainly suffered

from it. Being a freelance translator meant I was working 7

days a week, nights and weekends and no holidays to speak off.

Working from home is nice in that you can work in pajamas and

slippers and don't have to go anywhere, but on the other hand

the work is always there, you can't close the door and leave

it behind. There is no way I could do that now. I was granted

a permanent disability pension in July, and before that I was

on an indefinite sick leave.

> Do they also do " living donors " where you live?

It's not encouraged, but it is possible to donate a kidney or

a part of the pancrea, for example. I haven't heard of anyone

donating a part of their liver, but I guess it is legally

equally possible.

Have a nice day (I guess it's a bit earlier in your part of

the world than here)! :-)

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Jaana,

Thank you for sharing with us your story. You have gone through a lot during

this time. Did you mention that they put you on a transplant list??? As you

are getting better ( think that is what I read ) It is hopeful that you will

not need the transplant and will be able to control all the contributing causes

..

Clara M.Shelton

cshelton33@...

[Guest guest]

I'm suprised to hear that they do those other types of transplants but not

living donor

liver transplants because the liver regenerates so quickly.

Jaana Fogl <jfogl@...> wrote:

Hi again,

I do hope you are feeling better by now.

So you have Sjogren's too - it seems it is very common with

people with AIH or PBC. Do you suffer from dry eyes? Mine are

sometimes so bad that it is actually quiteuncomfortable to get

them open in the morning, it feels like something is peeling

off...

WOOTTEN wrote:

> extremely high cholesterol. This is due to the liver, too. They even

> have to dilute the

> blood in order to perform some of the labs because it is too fatty (I

> had never heard of that before). For the past 13 months, I have not

When I was in the hospital there was one point where the

cholesterol values were zero, around the same time when my

liver function was below 10%. I have no idea how that is

possible and the doctor was a bit baffled as well, but it

seems it wasn't any error from the lab's part. The situation

corrected itself quickly, and so far so good. Apparently the

cholesterol is somehow produced in the liver, so it may go up

(or down?) regardless of how healthy a life we lead.

> worked as the fatigue & confusion began to be a challenge. I worked 12hr

> nights as an RN on an extremely busy floor &

> my job performance was beginning to decline.

Did you have a similar situation when you were first

diagnosed? My doctors have actually suggested that autoimmune

diseases can be triggered off by stress. I certainly suffered

from it. Being a freelance translator meant I was working 7

days a week, nights and weekends and no holidays to speak off.

Working from home is nice in that you can work in pajamas and

slippers and don't have to go anywhere, but on the other hand

the work is always there, you can't close the door and leave

it behind. There is no way I could do that now. I was granted

a permanent disability pension in July, and before that I was

on an indefinite sick leave.

> Do they also do " living donors " where you live?

It's not encouraged, but it is possible to donate a kidney or

a part of the pancrea, for example. I haven't heard of anyone

donating a part of their liver, but I guess it is legally

equally possible.

Have a nice day (I guess it's a bit earlier in your part of

the world than here)! :-)

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

I don't know for sure that they don't, it's maybe just that I

haven't heard of them. In any case they are rare. The main

reason may be that since the queues are usually so short,

there isn't a need - even though the liver does regenerate

quickly, it's still a major operation for the donor.

Generally speaking all kinds of living donor transplants are

reasonably rare and they are mostly cases where a parent

donates a kidney to a child, for example.

Jaana

WOOTTEN wrote:

>

>

> I'm suprised to hear that they do those other types of transplants but

> not living donor

> liver transplants because the liver regenerates so quickly.

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Here again -

a little digging actually revealed that they *do* use living

liver donors for child patients, where the child gets a part

of an adult's liver. Fancy I'd never bumped into that

information before! Maybe it's because I've been looking at

things from an adult point of view, and obviously am not so

familiar with transplants in general (trying to avoid the

subject, I guess...).

Now I have to dig some more to see how much it's used for

adults, but it seems the only mentions of any living donor

transplants are about kids.

Jaana

WOOTTEN wrote:

>

>

> I'm suprised to hear that they do those other types of transplants but

> not living donor

> liver transplants because the liver regenerates so quickly.

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Living donor transplants are being done more frequently here due to the growing

need for donors. They use the right portion of the donor's liver & their liver

regenerates to normal size within a few weeks.I know that the size of the donor

liver should be com-

parable to the size of the recipients. And there are numerous tests done on

both of the people involved prior to making any decisions.

I guess that in Finland, if the wait is not that long; they don't use anything

like our MELD score which helps in assuring that the sickest people who are

waiting are given

the avaiable organs.

Jaana Fogl <jfogl@...> wrote:

Here again -

a little digging actually revealed that they *do* use living

liver donors for child patients, where the child gets a part

of an adult's liver. Fancy I'd never bumped into that

information before! Maybe it's because I've been looking at

things from an adult point of view, and obviously am not so

familiar with transplants in general (trying to avoid the

subject, I guess...).

Now I have to dig some more to see how much it's used for

adults, but it seems the only mentions of any living donor

transplants are about kids.

Jaana

WOOTTEN wrote:

>

>

> I'm suprised to hear that they do those other types of transplants but

> not living donor

> liver transplants because the liver regenerates so quickly.

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Hi,

WOOTTEN wrote:

>

> I guess that in Finland, if the wait is not that long; they don't use

> anything like our MELD score which helps in assuring that the sickest

> people who are waiting are given

> the avaiable organs.

They do. For every type of transplant people are placed in the

queue according to the urgency of the need for the transplant.

The waiting times are longer for other organs, for example for

a kidney the average seems to be 117 days, which means a

rating system is needed.

The same goes for other operations, because with the NHS

system there can be waiting periods for other operations as

well. :-(

Since there are queues, every hospital must according to the

law have their waiting times for operations available for

public viewing. In most cases the info can be found online

(that's where I just peeked :-) ).

In all Scandinavian countries, donated organs are searched and

shared within the entire Scandinavia, which obviously helps.

In Scandinavia the healthcare sector is mainly state run,

which probably means that many things are different from

countries where the system relies on private health insurance.

For instance, most major operations are carried out in the

state owned University hospitals, which then can share their

patient databases (but must ask for permission before doing

so. It's quite funny, actually - as I am going to the

rheumatology ward of the same hospital in a couple of weeks, I

have to sign a paper where I give them permission to access my

data in the same hospital).

The plus side of the NHS is that it ensures that everyone,

regardless of income, receives the same treatment and can

afford the necessary medication (although it's not free

altogether like in Britain, for example - a hospital day here

costs 22 euros).

The downside (apart from higher taxes, obviously), like

mentioned, is that it also means that there can be a waiting

period for other operations than just transplants, and even

for specialist appointments. Also there is not the kind of

choice of hospital and doctors there would be in the private

sector. Private clinics and private health insurances are

available, of course, and one can sign into a state hospital

as a private patient in which case you pay the real cost of

the treatment (and probably get to stay in a nicer room :-) ).

Those options are not particularly popular, though, even

though a private insurance is really cheap, around 400 euros

per year.

But I really don't know why the queues are as they are. You

got me interested in the matter, though - I am going to see

the doctor on Monday so I think I am going to ask her about it.

Have a nice weekend!

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

Well I like that fact that everyone can be taken care even if they don't have

insurance

Some people here are struggling to pay for office visits, procedures, etc

And I take Ambien & wouldn't be without it! Before my mother got her

transplant, she used to lie awake nearly all night......

Jaana Fogl <jfogl@...> wrote:

Hi,

WOOTTEN wrote:

>

> I guess that in Finland, if the wait is not that long; they don't use

> anything like our MELD score which helps in assuring that the sickest

> people who are waiting are given

> the avaiable organs.

They do. For every type of transplant people are placed in the

queue according to the urgency of the need for the transplant.

The waiting times are longer for other organs, for example for

a kidney the average seems to be 117 days, which means a

rating system is needed.

The same goes for other operations, because with the NHS

system there can be waiting periods for other operations as

well. :-(

Since there are queues, every hospital must according to the

law have their waiting times for operations available for

public viewing. In most cases the info can be found online

(that's where I just peeked :-) ).

In all Scandinavian countries, donated organs are searched and

shared within the entire Scandinavia, which obviously helps.

In Scandinavia the healthcare sector is mainly state run,

which probably means that many things are different from

countries where the system relies on private health insurance.

For instance, most major operations are carried out in the

state owned University hospitals, which then can share their

patient databases (but must ask for permission before doing

so. It's quite funny, actually - as I am going to the

rheumatology ward of the same hospital in a couple of weeks, I

have to sign a paper where I give them permission to access my

data in the same hospital).

The plus side of the NHS is that it ensures that everyone,

regardless of income, receives the same treatment and can

afford the necessary medication (although it's not free

altogether like in Britain, for example - a hospital day here

costs 22 euros).

The downside (apart from higher taxes, obviously), like

mentioned, is that it also means that there can be a waiting

period for other operations than just transplants, and even

for specialist appointments. Also there is not the kind of

choice of hospital and doctors there would be in the private

sector. Private clinics and private health insurances are

available, of course, and one can sign into a state hospital

as a private patient in which case you pay the real cost of

the treatment (and probably get to stay in a nicer room :-) ).

Those options are not particularly popular, though, even

though a private insurance is really cheap, around 400 euros

per year.

But I really don't know why the queues are as they are. You

got me interested in the matter, though - I am going to see

the doctor on Monday so I think I am going to ask her about it.

Have a nice weekend!

Jaana

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************

[Guest guest]

I can well imagine that - for what I've heard the doctors'

fees can be very high in the United Sates.

Here most people (including the wealthy ones) feel that since

the taxes are pretty high, they are entitled to a high level

of all sorts of social services without having to recourse to

the private sector, so private insurances are rare.

I know I would certainly have been bankrupt years ago if the

prices of the medical services and medicines were higher, or

if I had to pay hundreds of euros in insurance payments.

Just noticed I'll have to restock on the sleeping pills - they

really are a life saver, aren't they? :-) I can sleep without

them, but the problem is I then wake up every 45 minutes (like

clockwork, I've checked) and have to get up and go to the

toilet. With the pills, it's only once or twice a night so

there's a big difference.

Jaana

-

WOOTTEN wrote:

>

>

> Well I like that fact that everyone can be taken care even if they don't

> have insurance

> Some people here are struggling to pay for office visits, procedures, etc

> And I take Ambien & wouldn't be without it! Before my mother got her

> transplant, she used to lie awake nearly all night......

>

--

Jaana Fogl

jfogl at saunalahti.fi

*************************************

* I am a Bear of Very Little Brain, *

* and long words Bother me. *

* - Winnie the Pooh *

*************************************