My Support group.....without you I'd be in mental ward....

[Guest guest]

I want to thank everyone for their support, on and off line, and the caring you

show me. It is a total shame the lack of support there is for us.

On 5 April I go to OKC to see their liver doctors etc. They are also a

transplant hospital. I'm tired of all the Doctors except Mayo, saying I'm not

that bad...and I could have a biopsy and Mayo was silly for not doing one.

So I'm driving (riding...I can't drive much anymore due to the sleeping problem

I have. I fall asleep at the wheel...etc..)for them to give me their opinion.

They accepted me rather quickly for nothing wrong! LOL.

Anyone heard of OKC transplant hospital/clinic?

For about a month I was dizzy, my head spinning like the mixer at the carnival.

It was strange as I'd get dizzy AFTER I slowly sat up...sometimes I'd fall

backward/forwards like in a faint. And I would go spinning dizzy sometimes when

I layed down...about 2 minutes after, I found the delayed reaction puzzling.

Doctors didn't care around here...

It is almost gone now...don't know why or how long for.

Questions for those who want to help me:

1. Swallowing. I am finding it increasingly hard to swallow. I take vicodine

and even with one pill I have to swallow several times before it will go

down...and it is getting worse. I mentioned it to my husband and he says it is

the pollen in the air (funny, didn't used to be bothered from pollen). He

thinks I am OVER REACTING and looking for symptoms to have....sigh.

2. Last night I had some symptons I'd like to see if could be the start of my

liver decompensating?

History: First diagnosed as moderate cirrhosis April 1997. Doctors ignored it

and so I thought it was no big deal.

In Mar 2011 I go to Mayo Clinic in Arizona for a general check up as I'd turned

60 and the doctors in Arkansas I think of the bottom of their class..haha...

I go home after 3 weeks due to expenses and go back to Mayo in June 2011 for 6

weeks. No communication from Mayo on any tests run in Mar so I figure I'm fine

and want to have some loproscopic surgery for fecal incontience and rectecelle.

(I wonder if these have anything to do with liver? The severe incontience was

really bad for 3 yrs and my GP just said slight diahrea on my chart...sigh.

When I have my June appt at Mayo the first the doctor says is " You do know you

have severe liver disease? " (If I'd known that wouldn't I have mentioned it in

Mar when I gave them my detailed medical history???)

I told her NO! She then went on with other test results.

So it is June 2011 before any liver tests are done. They determine I am too

severe to even do a biopsy....and I go home with no support etc.

**OK...that is the history...now my symptoms last night?

I slept for about 18 hours straight. My Grandson came into my room and I was

confused as to what day and time it was. He proved it to me with the cell

phone. I had asked him why he was home from school?

It was 8:30pm I asked him.

I had to take3 viodine which I rarely take more than 1/2 half pill. My legs

were so restless and painful. I tried a massager on them and the pain was so

bad I yelled out.

My tailbone area was killing me...it hurt and kept getting worse. A heating pad

helped a bit.

Again...trouble with swallowing.

My legs are that of a normal thin person (I'm 270)...but I gained 10 lbs in 9

weeks...should have lost weight with legs so thin.

So am I over reacting or what? Today is great compared to yesterday... but I'm

tired and not to focused.

Can anyone help me? No family or Doctors think I'm very bad. My husband wanted

to know why I felt the need to go to OKC...sigh

Carole