Re: Re: Patty I do understand

[Guest guest]

In a message dated 11/30/02 12:01:32 AM Eastern Standard Time,

brwnbare9@... writes:

>

> I am as you also very interested in finding a cure for this disease for

> all who suffer, but please dont feel that I did not think the reason for

> this

> disease was not important. Patty for many years we have searched for a

> reason for Brandans disease, and after all our searching, Brandan was

> finally

> diagnosed with Idopathic CP meaning they truly are not sure why the reason

> Brandan has what he does?

>

I had pancreas divisim but the doctors would never say that was the cause of

my illness. They just didn't know. I understand why they didn't know. Even

with very large stints, large double stints in my small duct at the same time

I continued to have pain and was unable to eat. It is so very confusing. I

never drank alcohol or did anything other than live a very healthy clean

life. I contracted hepatitis B, ovarian cancer, and chronic pancreatitis. I

have chronic hepatitis which keeps me an invalid, I had cancer and all that

goes with that disease but chronic pancreatitis was the worst of them all.

With cp I suffered from all sorts of complications. Blood Infections from

being on TPN, ercp's, stints, nose tubes for feeding, two j-tubes, two ports,

bowel infections, yeast infections, excruciating pain etc. The list goes on

and on with what I endured and I am sure what everyone endures with cp. It is

a terrible disease and something has to be done to cure those who are ill

with it now and those who will come after us who will contract the disease.

The suffering is horrendous. I had two choices when I had cp. My first

choice was to stay as I was and live a short life. I knew that I didn't have

long to live suffering and starving from cp. If I were lucky I would be able

to eat one-fourth of a teaspoon of an egg white every 45 min. I would carry

in my pocket a timer and every 45 minutes the timer would ring and at that

time I would try to eat one-fourth of a teaspoon of egg white. Most of the

time I couldn't even eat that. The hardest part of having cp for me was the

starving. Seeing the depression on my husbands face and the worry and fear

on my daughter face. Now since I had the pancreatectomy and islet cell

transplant I don't carry the fear and stress of another attack. I don't

suffer the pain from my sick pancreas and I don't hurt over my entire body

from completely starving most of the time. Once I made up my mind that the

pancreatectomy and islet cell surgery was for me and I had no other chance

for recovery I was elated and scared. I was so elated that I could have my

pancreas removed and with that happening I wouldn't have pain, or starve, or

suffer from depression and fear of another day and what it would bring. My

long, long search for a cure was over. My researching, traveling,

procedures, another doctor and another doctor with no help was over. I am

blessed to have found out about Dr. Sutherland and the surgery that saved my

life. I don't know what is down the road but my road in the past was so

rocky I know that I will be able to handle the road in the future. Having

the illnesses that I had were terrible but they have made me a deeper,

stronger, more caring, loving and understanding person with so much

compassion for others. Before my illnesses I didn't really understand the

real meaning of life and how important it is to live each day and to love one

another. Shirley