James'
Story
(By his fiancee Judy)
It has taken me over a year to be
able to write about what happened to my fiancee. Now is the time for
me to share his story with you.
James was a self-employed businessman living in southeast Texas. He
was not, nor had he ever been an intravenous drug user or an alcoholic. He did
enjoy
having a beer or two, and did so for many years.
In 1996 James came down with the "flu" and went to see a doctor
after the "flu" didn't go away for over 2 weeks. The
doctor gave him cough medicine and sent him home. The
"flu" would often return after a few weeks, and the doctor would
give him the same thing. Never did he ever order blood work to see
why James always had the "flu".
In May of 1998, James was taken to the hospital with severe stomach pains.
He was tested for AIDS, e-coli, drug overdose, and who knows what else,
and finally hepatitis. He was told he had hepatitis, but not hepatitis C.
The doctor sent him home, told him to stop using drugs and to stop
drinking.
For the next year, James often had the "flu" and was tired most
of the time. The severe stomach pains started again, and he saw a
new doctor. When he entered this doctor's office, the first thing he was
asked was when he had showered last. At this point in time, James
was jaundice. He was admitted to the hospital once again. He was
bleeding internally and not even able to have an IV. Both of his
arms turned the color of mashed raspberries from where blood samples were
taken. I was living and working in New York State at this time.
His family called me and told me to come right away , as they didn't think
he was going to live. I took a flight to Texas the next day and when I
arrived, he was released. At this time, he was told he had hep C,
but never told about the seriousness of the disease. He wasn't told
a thing about the disease. However, he was told that he probably
wouldn't live more than a year. He was also told he had to have a
liver transplant and was referred to a doctor in Houston, Texas.
The appointment with the transplant doctor was scheduled for the first
part of June. He was told to have his records sent to the doctor
before his appointment. After several phone calls to his hometown
doctor, he was assured that all records had been sent.
The appointment day arrived. When James arrived at the transplant
doctor's office, he was told that his records had not been sent, but
the transplant doctor would still see him. That was the start of the
visit from hell.
This doctor told him he had to attend AA meetings to help him stop
drinking, he had to quit working, and driving. He was to go home and
wait. He was also told, since he did not have insurance, that he
would have to go on a long waiting list to receive a liver, if he was
found to be a good candidate for a liver. He had to attend AA
meetings, twice a week for 6 months, and then it would be decided if he
was accepted into the program. He was also told, if he had $150,000
CASH, he could go to the top of the transplant list. I am sure I
don't need to tell you what this statement did to his frame of mind.
The transplant doctor also told him he was to be on meds for his stomach,
and the doctor in his hometown would be sent a letter about the meeting
and told which med. to prescribe for him.
James went back to the doctor in his hometown 10 days later. The
doctor
told him to stop drinking. Hard to stop doing what you stopped doing
over 6 months before. When James asked the doctor about the
prescription he was to be given, the hometown doctor said he knew nothing
about that. He said he never received a letter from the transplant
doctor and that what that doctor probably wanted him on was a pill to make
him sick if he, you guessed it, had a drink.
I quit my job in New York State and moved to Texas in July of 1999.
We were on a campaign to find a doctor who knew something about hep C, and
one who cared. We also did a great deal of research, and watched
carefully what he ate and started him on Liverite. By the end of
July, James had an appointment with a gastro doctor in Houston.
Once again his records were needed
for this new doctor. It took me over 10 days to get them, but I did.
When we looked them over, we found out that the transplant doctor had sent
the hometown doctor a letter about the visit and had prescribed lactulose.
Strange how we could find that, but the hometown doctor just didn't see
it!
The day of the appointment arrived and we headed for Houston. The
doctor was well informed, understanding, and cared! He explained to
both of us about hep C, suggested a good diet, and told us James was a
candidate for the combo treatment. He explained what this would
mean, and that we shouldn't lose hope. He also told James not to
quit work, but only do what he felt he could do. He told him to keep
a positive outlook and told us how to go about getting financial help to
purchase the needed drugs.
It took just 3 weeks from the time we made the application until James was
accepted by the drug company for the combo treatment drugs he needed.
One more visit to the gastro doctor in Houston, and James had his first
treatment.
I wish I could tell you this story had a happy ending, but.........
Three weeks after James started the combo treatment, he was once again
back in the hospital. This would be his last visit. The
treatment was too little too late, he was in the final stages of his life.
On the morning of September 30, 1999, I was called at home and told to
come to the hospital as soon as possible. I arrived there 15 minutes
after the call. I held his hand, told him I loved him and still
prayed for a miracle. At 11:40 a.m., the nurse came to me and told
me I had to tell James it was ok to let go. She said he was holding
on for me and was afraid I wouldn't be ok without him.
I have no idea where I got the strength to do what I had to do, but at
11:43 a.m., I stood at his bedside, held him in my arms, whispered the
last words I would ever say to James and told him I loved him. At
11:44 a.m., at the age of 40, James died in my arms. My best friend,
my lover, my support became one of the 10,000 that hep C claimed in 1999.
Do I blame the doctors because James had hep C? No. Do I
blame them
because he had poor medical care? You bet I do! I believe that if
the doctors had done blood work years ago and found out he had hep C, been
responsible and cared, he wouldn't have needed $150,000 CASH, and would
still be alive today.
The opinions expressed on
this page are solely those of the author and none of the information included is to be
misconstrued as medical advise.
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Copyright
© 1997-2012 National Hepatitis C Coalition, Inc.
All Rights Reserved
Last Updated
March 20, 2012
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