desperately in need of advice

[Guest guest]

Hi all,

I hope everyone is having a pain free weekend. I apologize now for how long

this post is going to be, but I will try to make it as short as possible.

Last month, I went to see Dr. Lowy at University of Cincinnati Hospital

to see about having a TP/ICT. There is a lot of pre-work up that has to be done

before being scheduled or knowing if you are a candidate for this surgery. The

tests include a glucose tolerance test, blood work, and a CAT scan of your liver

and pancreas. I took several films with me to see Dr. Lowy. He spent 1 1/2

hours with my mom, my husband, and myself going over the surgery with us. He

was wonderful. The next day, Dr. Lowy called me personally to tell me that in

looking over my films, which he took to Grand Rounds with him and also went over

them with a radiologist and pathologist, it appeared that my liver was a little

fatty. This is an extreme factor in being a candidate or not for having a

TP/ICT. He, therefore, told me that I would have to have a liver biopsy to

check the liver more closely. Therefore, a week ago this past Thursday I went

down there to have a liver biopsy. I was not at all nervous, which is extremely

unlike me, about having this procedure done as several people had told me it was

a " piece of cake. " Instead of him using one needle, he needed to use

four!!!!!!!!!! I'm one of these people that if I didn't have bad luck I

wouldn't have any!!! He took two samples. The two nurses in the room with us

said that they were the two biggest samples that they had ever seen. I had a

lot of pain right after the procedure, which they said was normal for up to 24

hours after the procedure. That night I had the worst pain that I have ever had

(this says a lot as a CP sufferer in that we all know how painful an acute

attack is). I was a hair away from going to the ER, but I am very stubborn

especially when it comes to going to the ER. I continued to have severe pain

the rest of the week and into last week. Yesterday afternoon, Friday, Dr.

Lowy's nurse (Debbie) called me to tell me that my liver was over 80%

fatty!!!!!!!!!!!!! I, therefore, cannot have the TP/ICT. If they were to try

to do the islet cell transplantation, I would go into liver failure and

die!!!!!!!!! So now I am back to square one as to what to do about any kind of

surgery. In the meantime, Debbie asked me how my pain was in my right side and

up into my shoulder from the liver biopsy. I told her it was still very

painful. She then transferred my call to the Radiology Department to speak with

a nurse there. The nurse came right out and said, you have two choices, you can

either come down here to the hospital or go to the hospital closer to your home

(Dayton, Ohio). Of course, I chose the latter. Therefore, they called my

Internist and told him the situation and he called me and said that I was to go

to the hospital immediately for a CAT scan. I rushed to the hospital and had

the CAT scan. The radiologist was given instructions to read my films

immediately and call my Internist as well as faxing a copy of the report to the

pathologist who performed my liver biopsy. My husband and I came home from the

hospital and I got ready for bed immediately (6:30 p.m.) as I was exhausted.

About 15 minutes later, my Internist called me and said that I had been bleeding

from my liver due to the biopsy and that I had a huge hematoma on my liver. He

told me to go to the ER immediately. He called the ER and spoke to one of the

ER docs and explained my situation to him. He wanted them to check my

hemoglobin. He said if it was 10.0 or over I could go home.I got dressed and my

husband rushed me to the ER. I went to the front desk and explained my

situation and I was asked to " take a seat. " The ER was packed. Now I know

where everyone is on a Friday night. . .at the ER!!!!!!!!! About 45 minutes

later, I went back to the front desk and asked what was going on. The triage

nurse told me that the doc who my Internist called had already left 30 minutes

ago. (My (bad) luck yet again). I was now just another number in the line of

people waiting in the ER. She said they had no beds and there were 10 people

ahead of me. I lost it and gave her HELL!!!!!!!!! She told me to wait 30

minutes and she would see what she could do. Well, they called me back in about

40 minutes and I again explained my situation to the nurse who then drew tons of

blood. The ER doc came in and I again explained my situation to him and he said

he would see what my hemoglobin was. About three hours later, the doc came in

and said my hemoglobin was 11.6!!!!!!!!!!!! Wow, a little bit of good luck, I

couldn't believe it!!!!!!!! I then came on home. I was told to do nothing

strenuous and to just rest so that the hematoma didn't burst and I didn't start

bleeding again.

I really need some advice from you all. I need this support group very badly

right now. Do I have the TP with no ICT and become a brittle diabetic at age

35? Do I have a Whipple? Do I just continue to live with CP? Has anyone been

told about the long-term effects of all the narcotics that most of us are on as

far as tearing our body down, etc., etc.? I really need some advice, good or

bad.

I would be extremely grateful to hear from anyone who has had a TP/ICT, just a

TP, a Whipple, and anyone who is a brittle diabetic. I have so much more to

think about now that I don't know if I am coming or going.

Thank you all for taking the time to read this long post. I will be extremely

grateful to hear from as many of you as possible.

My thoughts and prayers are with you all.

Thank you.

T. (Ohio)