First
I want to say that the reason I have not posted my story
is because I was very much the exception to the rule and
don't want to scare anyone out of a transplant. Remember
that what happened to me only happens to a small % of transplants.
I found
out I had Hep-c by accident around 1995 or 1996. I had to
switch Drs due to some legal problems my previous dr had.
I just picked one from the insurance co. list and went to
see him. I have known since 1979 or 1980 that my liver enzymes
run high and have told that to every dr I have seen since.
But the new dr just did not say, "Hum" He immediately
had me tested for Hep-c and the test came back positive.
My wife was tested and came back neg., thank God. I did
not know what Hep-c was but I soon found out!
I had
experienced one specific incidence of extreme fatigue prior
to that but just thought it was from getting older. That
dr referred me to a gastroenterologist. It turns out he
is one of the best drs I have ever had and my opinion of
drs in general is pretty poor.
I was
a medic during the Vietnam War and have worked in hospitals
for about 12 years of my life. Drs don't intimidate me at
all and I will let a dumb one know just what I think of
him.
Anyway,
we tried Interferon from Shering and it did not work (3mu)
three times a week. Then we tried 5mu three times per week
and that did not work. Next the combo with Ribivirin came
out and that seemed to work for a short time then failed.
At this time I had cirrhosis of the liver but really no
big symptoms except for some fatigue, which was getting
worse.
My Dr,
Dr Hixson, is part of Mountain West Gastroenterology. He
has a branch office where I live and referred me to the
transplant part of Mountain West in Salt Lake City. In SLC
they have about seven or so Drs in the group and I think
there requirements to get into the group are VERY high.
Anyway, I interviewed with the transplant team and was accepted
into the program. Since then, all decisions about my TX
have been done in a team fashion with transplant drs, surgeons,
social workers, pharmacists, and transplant nurses.
I was
monitored with blood tests and went to the LDS Hospital
about every three months where they have a liver clinic
every Thursday. (I live 320 miles from SLC) After about
1 and a half years I was placed on the list and moved to
#1.
I waited
for seven months and got THE call. By this time the only
symptoms were fatigue and I was loosing weight no matter
what I did. I knew things were getting bad. I was having
more pain in my right side. I read about wheat grass juice
as a 'miracle cure' for many things and tried it. It was
like taking Jolt or whatever but I could feel the energy
go back into my body. I am not recommending this remedy
but it sure did something to me!
I did
not suffer ascides prior to the transplant. I was at a golf
course waiting to play 9 holes of golf when I go called.
I walk and carry my clubs at reg. mountain courses. This
kept me in good physical condition, which I later found
out, may have helped save my life.
Well,
we went zipping up to SLC, the operation could not have
gone smoother (done in 6 hours) and I was doing so well
I skipped one post operation ICU. For about three days or
so I was like a poster child for liver transplants, planning
to go home in a week!
Then
whammmmmm, major rejection kicked in and they could not
get me stabilized on anti-rejection drugs. Then I got pneumonia
from CMV and one lung collapsed. Things just went down hill
from that point. I was admitted on Oct.22nd, 1999. By Christmas
I was in and out of conscientiousness, the Drs were telling
my wife to start thinking about making arrangements for
me and gave me very low odds on living. I had ascides so
bad I looked like a balloon and had about 100+ lbs of excess
fluid. My hair was falling out in chunks and I was very
yellow. I had six IV's running at once with two drain tubes,
one for each lung because I had pneumonia again, a catheter,
oxygen, and I was incubated because I could not breath on
my own. I looked like a science-fiction character.
Well,
then I started getting better. At this time I was seeing
only critical care drs. Their job is just to keep you alive.
Things seemed to snowball and I continued to defy logic
and kept getting better. I was discharged in March of 2000,
five months after entering the hospital. I still had a feeding
tube and was on oxygen. Less than two weeks of being home
I was off the oxygen and the feeding tube was gone. I have
done nothing but get better ever since. My blood tests are
stable at this time and I am down to 5 prescription drugs
from 12 and most dosages are lower. By the way, the surgeons
that operated on me said with the state of my liver I would
have lived for about three more weeks and if my physical
condition had not been so good I would have not survived
the operation.
Right
now all I take is vit.E and Silymarin or Maximum Milk Thistle.
I DID have a near death experience when my heart stopped
in the hospital and I believe God spared me to help others.
That is why I even go to the message boards.
By the
way, the last time I was up to SLC they told me they did
a liver transplant, got the patient stabilized on meds.,
and sent him home in five DAYS.
I see
the transplant drs every four months now and hope to go
to twice a year. I now get monthly blood tests, down from
weekly and my arms are very grateful for that. I now see
people who ask; I thought you were going to have an operation?
I just laugh and tell them I already had it. The nurses
at the LDS Hospital do not recognize me because I look so
different now. Several who thought I would die have told
me I am a walking miracle. There is a volunteer who was
one of there first liver transplants and he is at every
liver clinic every Tuesday and has done so for over 15 years.
He told me he has never seen anyone get a bad as me and
live.
I feel
every day is a gift to me from God and I try not to waste
any. I hope my story helps others and has not scared you
too much. Needless to say a lot happened that I did not
write in those five months but you got the highlights. If
you have any specific questions feel free to ask. As you
can see you can beat the odds and statistics, just NEVER
give up.
God
bless and good luck, Dennis aka Bogie
P.S.
No, even though I live in Utah I am NOT LDS.
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