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Diamondgirl's Story


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 me.

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 said.

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 evaluation.

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, everything.

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 5 hours.

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

Love MJ



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