reply to Charlene

[Guest guest]

Charlene, (sorry this is soooo long)

I too have experienced the neglect of an incompetent doctor which

resulted in a transplant in Dec 1994. Fifteen months later my enzymes

started to rise, at first it was thought to be rejection but after the

subsequent treatment my numbers continued to rise. For some reason the

meds were no longer effective and it was suspected that perhaps the AIH

had returned. Up to that point Baylor had only one other patient whose

AIH had returned. My meds were switched from Cyclosporin to Prograf

and suddenly my numbers returned to normal. That was three years ago

and I've been off prednisone for the last 2 1/2 years. I'm NOT in any

way suggesting that your doctors should switch your meds (what works

for you, didn't work for me) I only want to let you know that I 'think'

I know exactly how you feel.

I used to think that I was in control of my health before I got sick.

I viewed the transplant as a return of that same control. I knew all

the right things to do and how to take care of myself. When I was told

that something had gone wrong (meds or returning AIH) I couldn't deal

with it. I think I could have accepted the news a lot better if I felt

physically bad - but I felt great. The level of frustration was almost

too much. I was so out of control that I was even M*F*ing every one at

Baylor. Fortunately they understood that I was lashing out from

frustration and pretty much decided to ignore me (we laugh about it

now).

I was still angry and I'm sure depressed as well when I returned home.

All I wanted to do was stay home and analyze every feeling in my body.

My husband sort of forced me to continue going to the gym and continue

walking (I got up to 6 miles a day).

The physical exercise calmed my mind and allowed me to get a better

perspective on this situation.

These are some of the conclusions I came up with.

1 - The only control we have regarding health is that we can provide

our bodies the proper environment for good health.

That's all we can do - there are no guarantees that we will avoid

diseases of any type.

2 - The doctors at the transplant centers view us as their babies.

They almost have a personal interest in our well being. They will stop

at nothing to ensure our survival, they want us to thrive. Most people

wish they had doctors like ours.

After being screwed over by my former doctor the most difficult

adjustment was when I decided to trust my medical team with the

resposibility of my physical health. For me, it's been a good decision

- they're a lot smarter and know a lot more about this disease than I

ever could. I feel as though a giant weight has been lifted off me,

and I now have the freedom to have fun and focus on more constructive

things.

3 - AIH doesn't make us sick or kill us. We get sick and die because

of the results of cirrohsis.

Speaking for both of us now. Our livers are fine. We don't have

cirrohsis, our labs are great. How lucky are we that our doctors know

what to look for and are able to stop any progression before we even

have a clue that anything is wrong.

4 - After everything we've been through, do we really want to waste our

time making ourselves sick with needless worry?

It sounds like there are a couple of things going on with you right

now.

For one thing a few of the side effects of the meds coincide with your

symptoms.

ranitidine - nausea, headache

prograf - loss of energy, nausea, headache

prednisone - tiredness, indigestion, nervousness

It's a crime that most medicines have side effects that mimic the

conditions they're supposed to alleviate.

Ever watch the commercials on TV for some new wonder drug and listen to

the side effects? I don't get it.

The symptoms you're experiencing can be exascerbated by stress. I'm

sorry you missed the groups discussion about stress, and all the damage

it can do.

The doctors don't just check enzymes for signs of liver damage, they

check and compare other values as well. If they even suspected

something was wrong they'd do another biopsy to be sure. Considering

the watchful eye they keep on us, I don't think you have anything to

worry about. Your labs are good and maybe as soon as you're able to

relax a little, these annoying side effects will subside. I hope you

are feeling better very soon. I forgot to mention that yoga really

helps me to stay balanced with these ups and downs.

I'm interested to know your opinions, observations and feelings on

these matters.

I hope I didn't annoy you, it's very difficult for me to converse and

make myself understood without a face to face meeting.

Take care,

Barbara Ann

Transplant Recipient

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