Hi I am Diamondgirl/MJdidit/Mary
Jane. I am a 46 yr. old female. I was diagnosed with Hepatitis-C
in March of 1998, following years of fatigue and all kinds
of medical problems.
I can remember my dad telling me I was gonna sleep my life
away. I was and still am chronically fatigued. My symptoms
included joint pain, fatigue, terrible sinus infections. Bouts
of dizziness and nausea. I really started getting bad the
summer of 97.
I started doctoring then trying to find out what the problem
was. I went to my GP and he said it was depression. He was
attributing it to the death of my mother the previous winter.
I let him doctor me for that for a couple of months. I finally
went in to see him and told him the depression is just a symptom
it is not the problem. Well by this time he was treating me
like a crazy hypochondriac. And I was getting really really
frustrated. I had previously told him all my symptoms. That
day I happened to mention to him the fact that my elbow joint
and my ankle were hurting me really bad all the time and that
other joints hurt. I also mentioned the fact that my sister
had rheumatoid arthritis. Well that was all it took. He could
not get me out of his office fast enough. He told me he was
sending me to a rheumatologist. He literally pushed me out
the door. Relieved because he didn't know what to do with
I went to see the Rheumatologist and we discussed all of my
problems so he did an exam and a whole bunch of bloodwork.
When I went back to confer with him on the bloodtest he made
the statement that he didn't understand my results. He said
that my RA factor was a weak positive but my inflammation
rate was twice as high as it should be. He then stated he
was going to start me on methotrexate for the RA. He wrote
out the prescription and then back to the lab for more blood
tests. Methotrexate is really hard on the liver and while
people are on it have to have there liver enzymes checked
at least once a month. This was on a Friday. He told me to
start the meds on Saturday. So I had the script filled and
took the dose on Saturday. On Monday, I had a message on my
answering machine that told me if I had taken a dose to stop
the meds and if not not to take any of it. And that I needed
to go back to my GP for a Hep-C test.
I went back and
got the bloodwork done and a few days later received a phone
call from the GP. My then husband answered the phone and the
doctor did not even ask to speak to me. He told Mike she has
Hepatitis-C. He ended the conversation with it is nothing
to worry about come back in 6 months.
This is where I
say that the internet saved my life. I had no clue as to what
Hep-C was. All I knew was that I was sick. I visited a site
called http://www.askemilyass.com, and on her website she
had a list of 25 symptoms and I had 24 of them.The more I
read the more scared I became. I kept calling Mike over to
the computer and telling him "read this this isn't good."
Finally he said "I am going to take you somewhere and
find out what is going on with you.". So after several
calls he decided on the Mayo Clinic in Rochester MN. because
they took my insurance at 80%.
So off we went.
I had printed out the list of symptoms and highlighted all
of them that I had. I took that list with me. We went in to
confer with the doctor. He listened to me and he said "what's
wrong you have a Hep-c test come back positive and you panicked?"
Well I leaned across the desk looked him straight in the eyes
and whipped out my list. I said, "here is a list of 25
symptoms and I have 24 of them". Furthermore I said,
"I know you have heard this before but I am sick and
tired of being sick and tired."
I went thru a
week of testing. And believe me when I say at the Mayo Clinic
they leave no stone unturned. I was poked and prodded in every
orifice. They drew 16 vials of blood the first day. So on
Thursday we went back to see the doc and find out the results.
Talk about running into a brick wall.
The doctor was
sitting there discussing the results. He told me that I was
into level four cirrhosis and that there was nothing that
they could do for me. I would need a transplant. Well then
and there my mind and hearing just shut down. I was in shock.
Thank God Mike was with me so he knew what else the doc had
The doc said at
this stage of the game the combo would not do me any good.
He said, "you can try it but it won't help." On
our journey back to Indiana we stopped in Madison WI. and
spent the night. My dire circumstances hadn't really hit me
yet. Mike was on the phone talking to my best friend and was
telling her what we found out. When he was telling her it,
the brick wall came crashing down on me. I sat there thinking,
"wow I am going to have to have a transplant or die."
Talk about a reality check.
Once back home
I was back on the internet, looking for someone to talk to
about this. It took me about a month to find a message board
and chatroom. At that time it was Sapient Health Network,
later known as WebMD. A BigSam was one of the first people
I met. We were all in chat one night goofing around when in
pops a newbie named Lyric. Lyric and I became really close
really fast. That is where I met Scatus and Slick (May he
rest in peace.)
We all became fast
friends. We then started kicking around the idea of having
a get-together. So in October of '98, around 20 Heppos and
their spouses descended on Garrett, Indiana. aBigSam came
in style, his brother-in-law flew him in from Michigan.
That was one of the most rewarding times of my life. We all
bonded and had the greatest weekend. After that we all continued
to play in the chatroom and post on the boards there. I continued
getting sicker and sicker.
I could not afford
to go back to the Mayo so I hooked up with a local gastro.
They had not done a biopsy at Mayo because my platelets were
too low. All this guy had on his mind was he was going to
do a biopsy and an endoscopy. He gave me Vitamin K to try
and raise my platelets but it was useless. I finally thought
to myself I am gonna have to do something here or I will die
while this doc is messing around. So I asked him to refer
me to the University Hospital in Cleveland for a transplant
I then went on
two different occasions and stayed with Wyck and Lyric for
a week at a time. God Bless Wyck's soul he not only put up
with me but drove Lyric and me back and forth from Akron to
Cleveland everyday so I could go thru the evaluation. You
have to understand that putting up with Lyric and meI when
we are together is a task in itself because we are incorrigible
when we are together. I had a little Nissan truck at the time.
I was freezing all the time and would turn the heater on full
blast. Wyck would say, "you can turn me over now I'm
done on this side." LOL! And poor Viv had to sit on a
little jump seat sideways in the back. So to these two wonderful
people I have a debt I can never repay.
After two weeks
of evaluation they decided to put me on their transplant list.
When returning to Wyck and Lyric's home I had a phone call
from my insurance company. I returned it and the nice lady
on the other end told me that if I needed a transplant I had
to go to Mayo Clinic. If I didn't go there I could not get
one. When I started to protest about it being so far away
from home and that I could not afford to go there she said,
"we pay for everything." And she meant everything.
From the time I started thru the evaluation there until a
year after my transplant, everything including travel expenses
for a companion and me, motel bills, airfare, food allotment,
So once again Wyck
and Lyric showed me what the true meaning of friendship was.
Wyck allowed Lyric to accompany me to Mayo for my evaluation.
This was no small gesture since I took her away from home
for two weeks each time. So in February of 1999 Lyric and
I were off to Rochester MN. Rochester will never be the same.
I went thru two more weeks of evaluation. Scat came up and
joined us for a couple of days and it really got wild. LOL!
So after the evaluation
I was listed at the Mayo Clinic for transplant. Then the wait
began. That was in April of 1999. I got a phone call in August
telling me it was time to come to Rochester to wait on a liver.
My transplant coordinator said it may be two or three months
but you need to come up here. So my daughter Kendra and I
packed up and moved into a motel room. The only thing that
saved our sanity was she got a job and went to work. Otherwise
she might have killed me before the transplant. LOL!
This is where you
have to begin to see how truly blessed I have been with friends
and a wonderful daughter. Not just the fact that I got a transplant
after only waiting for ten months, but that it was paid for
in full and all my checkups and medicine were paid for in
full for a year after. I was also blessed again by getting
to meet Bear and Rosie. They came down and stayed at the motel
and we became fast friends. They came down several times and
could not do enough to help Kendra and me out. Scat also blessed
me in a way I can never repay. She introduced to me to Squeeky
(Judy) her sister-in-law. She asked Judy if she could look
out after us while we were there. She lives in Rochester and
went out of her way to help Kendra take care of me and to
take care of Kendra. She invited us into her home for meals.
Ran me around town showing me where everything was. And sat
with my daughter during the transplant so she would not have
to go thru it alone.
On the morning
of October.13th, after being up all night, Kendra and I were
just getting ready to go to bed around 7a.m. and the phone
rang. It was the doctor telling me I needed to come to the
hospital they were pretty sure that they had a liver for me.
Talk about being excited! So off to the hospital we went.
Judy met us there. I was taken to a room and prepared for
surgery. This all was over a course of about 4 and half or
About one o'clock
I was wheeled off to surgery. After 10 hours of surgery I
emerged with a new liver! After coming around and about 10
hours after being wheeled out, I was taken to my regular room.
In the recovery room I got up off of the gurney and walked
to the door and then they pushed me in a wheel chair to my
room. There I was greeted by Bear and Kendra and my husband.
After a wild eight
days in the hospital I was allowed to go back to the motel
and had to stay in Rochester for another month. I then got
to head home to Indiana in time for Thanksgiving.
I have been very
fortunate. I have not had any episodes of rejection and have
had no bad side effects from my medicine. At times it all
seems so surreal. Maybe it was just a dream! LOL!
If anyone has
any questions or if I can be of help in anyway. Please don't
hesitate to e-mail me at Diamondgirl_56@hotmail.com
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