Update

[Guest guest]

Hello,

thought I'd give an update on my visit to the doctor's on

Wednesday. I was pretty anxious going there, as my ALAT had been

slightly elevated in the autumn, and on top of that I had a major

tooth infection, had been on painkillers and antibiotics at the

time of the tests. There's also the diet, which was suspected to

be the cause of the elevated levels a couple of months ago.

So, imagine my surprise when the doc's first words (well, almost)

were: " Well, as far your liver's considered, I think you can do

pretty much anything " ! She went on to explain that all my liver

values were normal and in fact better than good, and that since

my liver had been able to take the diet, the painkillers, the

infections and the antibiotics, it seems to be able to take most

things. She also said it was amazing how my labs have never shown

even the slightest sign of the azathioprine. Apparently, it

usually always shows. She told me to " try and concentrate on

living and forget about the liver, at least for the time being " .

Well, I don't think I'll be able do that in a hurry, if ever.

Itäs not easy after years of having to always take the liver into

account, not being able to take even painkillers. They are very

strict about that here, and don't recommend any extra medication

at all unless it's literally life saving - anything extra is an

added strain on the liver, even if it improves one's quality of

life. I don't fully agree with that, but I guess it's worked for

me...

Still, after listening to the doctors' lectures about the subject

for years, it's a bit confusing to be told all of a sudden that I

can take anything a person with a normal liver could take.

While I'm of course happy about the good results, I don't quite

know how to take it. I have this nagging feeling that if I let my

guard down, disaster will strike again. By no means do I imagine

I've been cured, I know full well there isn't a cure for AIH. The

doctor also told me that it's highly unlikely they would ever try

to get me off the azathioprine. Apparently it is usually tried in

normal cases, but with the aggressive cases like mine it's not

worth the risk of having the critical situation repeat itself.

She also said that only 1/4 of those who stop taking azathioprine

can stay off it for good.

Anyway, to those with a new diagnosis, worrying about the future,

I think this is an encouraging example of how there really is

life after the diagnosis. The outbreak of my illness was very

severe: within weeks of the diagnosis I was already practically

on my way to liver transplant surgery, 50% of my liver was

necrotic and there was no measurable liver function left. And

look at me now! :-)

I have to say that I also feel a bit guilty about my good

situation when I know there are so many people here for whom

things are not going so well at all...

All the best and take care,

Jaana