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Tree's Story

Tree and Rich

In June of 1996, after a long and celebrated pregnancy, my husband and I planned for the arrival of our first son, little Richie. The nursery was made up, the bags were packed and we were ready to bring this little boy into a world filled with love. We went to the obstetricians office on Thursday and everything looked good. I was 41 1/2 weeks gestation (overdue by almost 2 weeks) so the doctor decided that if the baby didn't come over the weekend, we would induce on Monday.

Friday evening it looked at if the blessed event had come. The contractions came erratically but we headed off to the hospital in great delight. We arrived at the hospital and were treated to all the wonderful smiles and encouragement that all new parents receive. We were set up in a birthing room and told to prepare for the blessed event. Within a few minutes after settling in, the nurse came in and hooked me up to a fetal monitor, iv's and what not. We knew then, that something was drastically wrong. There was no fetal heartbeat. The nurse said not to worry and ran out and got the doctor. After several minutes of turning and moving to try and get the heartbeat, the doctor finally said, Theresa, I think your baby is dead. You can't imagine the shock and pain and heartbreak that my husband and I felt at that moment. We had waited 9 months, we had done everything right, the contractions had finally come and we were there to have our baby - the doctor offered little hope. To confirm our situation, the doctor ordered a specialist from ultrasound to come in and check for life. It was a long wait - in the middle of the night - it took the ultrasound technician about 2 hours to get there - I laid there - having contractions - waiting for a glimmer of hope. The ultrasound technician offered no hope and confirmed that our little Richie had died just hours before in my womb.

I was immediately shot full of morphine and given pain killers and an epidural. The worst part was yet to come. I had to give birth to a dead baby. Needless to say the resulting events, the birth, the visitation, the funeral and the burial were the most unbelievably sad moments of my life. I was not myself - just a shell without a soul. This event totally destroyed me as a woman. inside myself I had no confidence, I couldn't do anything. I couldn't drive, couldn't speak, couldn't work, couldn't go to the grocery store. I was a total failure as a woman - and this over took my soul completely. I had no control and ended up in therapy for over a year.

After a year or so of intense therapy, much pain, a new house and much love from my family - My husband and I decided to try again. The pain and fear was of course, overwhelming. But we tried it anyway. This time, we were going to do it right. We went to the best specialist in the world. Dr. Mowad at the University of Chicago Hospital. I had tests, after tests, after tests, I saw him every week for 8 months. I had 4 ultrasounds, not a pimple would appear without his knowing it. He took fabulous care of me. We decided at 38 weeks that we were not going to let this happen again. We would take the baby early. We decided to induce and bring the baby along 2 weeks early.

Once again, the blessed event had come. We were treated like royalty as they hooked me up to iv's and fetal monitors and epidurals. The heartbeat was strong. We were going to have a baby.!!!! Some time during the night, once again, things changed - a resident came into the room and said, "Theresa, I see you have Hepatitis C". I said, "what?", he said yes, your test results show you have HCV. I assured him that their had been a mistake and that I had never heard of such a thing. He went to the computer and printed out the results and showed me that 6 months earlier, I had been tested and results showed that I had the antibody of hepatitis C. The resident didn't know what to say, I asked about the baby, he didn't know, I asked what the disease would do to me, he didn't know, he offered a glimmer of hope and said that perhaps a false positive had resulted from my pregnancy. So they tested me again. The results of the HCV antibody test were positive once more. They could offer me no information, nothing - they said I would have to go to a liver guy for answers. In the meantime, I had to give birth to this baby. I had Connor Riley Callahan, 24 hours later and he was a beautiful baby boy. Very healthy, pink and perfect. For the moment we were in heaven.

At my six week checkup, I asked Dr. Mo how this could be. He told me that when he ordered tests for Hep B, they tested me for Hep C as well. He had just never looked for those results - so he was as surprised as I was. He confirmed the results of the antibody test once again, could offer me no help in terms of prognosis - he knew it could be bad, but suggested I go to a liver doc. That was the last time I thought about it for a while.

Over the next 6 months or so, I started to gather information. I read studies, I joined chat rooms, I made friends with Heppers on the net. I got stories and treatment and information. I really did my homework. I could quote studies and results paragraph by paragraph, and I had a plan. I found one of the leading hepatologists in the country at Rush-Presbyterian hospital here in the city. I knew that they were a leading transplant center and I knew they had doctors, hepatologists that worked strictly with hepatitis C. I went there for info and treatment. This doctor was quite impressed with my approach, I went in knowing what the statistics were. I knew several heppers that had been treated for years unsuccessfully and I had the data to prove it. I went in asking for what I wanted and he respected that. We started with the standard tests and biopsy. December of 98 my liver enzymes were a little high, in the 60's and my viral load was 8 million. I was diagnosed with genotype 1 b. My liver biopsy showed Grade 2 Stage 2 progression. Some fibrosis but no bridging. It was time to talk treatment.

This doc knew I knew my stuff. I had seen too many people try the standard treatments - interferon 3 x per week and fail. I knew that was not an option for me. The combination therapy of interferon + ribavirin 3 times per week was the standard treatment then, but I wouldn't have it. The results of the combination therapy were not much more promising. I had read studies about the Amgen interferon called INFERGEN. I knew that this was a synthetic interferon and when compared to the other interferon - head to head - the synthetic, INFERGEN did much better in studies. Especially with 1b'ers like me. I also knew from working and talking on the internet that 3 x per week was a dinosaur story. I wasn't going to go that way - no way - It was going to be daily or the highway. My doctor agreed that INFERGEN was the superior interferon - he also agreed that daily treatment was the best approach in my case. We only had one hurdle. I had to use ribavirin in combination with any interferon I used. We all know that the ribavirin was bundled with the standard interferon from Schrinng. My doctor could not legally prescribe ribavirin for me to use with the INFERGEN so I told him that he had to do what he had to do - and that I would do what I had to do. I contacted the PWA - People with Aids in New York city - and purchased the ribavirin on my own. He would prescribe the Infergen daily and would take the ribavirn every day. We were off to the races. I waited a few months to get leave from my job - I had more tests done in March of 99 - by then my viral load had shot up to 17 Million. It was time for me to treat.

Here's how the treatment went in a nutshell.

Weeks 1 - 2 - Infergen 15 mcg's every day ( I really did 18mcg because I would do every last drop.) plus 800 mgs ribavirin. I took milk thistle, vitamin E and Vitamin C every day. I was already taking Ativan (lorazapam) for anxiety. Blood tests, liver enzymes, cbc, white count every week. I was ok the first week or so, just the standard hot flashes with fever. My energy was up because the ribavirin is like taking straight speed. Blood counts were good.

Weeks 3 - 4 - Infergen 15 mcg's every day plus 800 mgs ribavirn. Blood tests, liver enzymes, cbc and white count every week. Fatigue started to settle in, I couldn't sleep and started taking antidepressants. I took welbutryn 400 mgs per day and paxil 20 mgs per day. I started ambian 10 mg per day for sleep. Continued with lorazapam, vitamin E, milk thistle and vitamin C. They did a 4 week PCR and I came back undetectable. HALY - FREAKING - LUYA !!!!! I went from a viral load of 17 million to less than detectable in 30 days. My blood tests showed normal enzymes - blood counts were really low - but we agreed that I could handle it.

Weeks 4 - 12 - Infergen 9 mcg's per day (I really did 12mcg because I would do every last drop.) plus 800 mgs ribavirin. Standard vitamins and milk thistle and antidepressants. The Fatigue and the hair loss started. I couldn't really work because brain fog had me very confused. I couldn't think, couldn't remember anything, I had to write down everything. I slept all the time - I didn't really eat very much - I felt puky all the time. I started taking compazine for the nausea. I had bouts - severe bouts with muscle aches. My legs would hurt so much I would cry. Headaches would blow the back of my head off. I started taking Vicoprofin for the pain. (IMPORTANT NOTE HERE: I did not take any of these complaints to my liver doctor - I found out early that he only treated the liver and not the symptoms of the treatment - I had to find an internist that knew about hep c to treat all the other symptoms. Fortunately, my liver doc sent me to a good internist who gave me what I needed to survive.) I also feared greatly that if I complained of all of this to my liver doc that he might get nervous with such an agressive treatment. I felt it best to keep him thinking I was going along fine - I never wanted to risk him backing out and pulling me off of treatment. Week 12 all liver enzymes were normal PCR was undetectable AGAIN.!!! Blood counts were low - thyroid was normal.

Weeks 12 - 26 - Infergen 9 mcg's per day plus ribavirin 800 mgs. Milk thistle, vitamin E, vitamin C, lorazapam, vicoprofin, ambian and compazine. (I tell ya, I had an Easter basket with all of my pills in it.) I did not work, couldn't work, would get breathless, could not run up the flight of stairs, very tired, puky and depressed. Went for blood work every 2 weeks or so - everything stayed the same - enzymes were normal, blood counts were low and week 26 PCR was UNDETECTABLE AGAIN. Energy although low was better - I was able to function within my household. I took care of my 2 children, Connor Riley was about a year old now and Kelly, my daughter was 10. Could do small jobs in the house - could do some shopping and errands and stuff. Most people looking at me would only notice the hair. I had to cut my hair real short because it got real thin. I got real thin too. Lost about 20 lbs by this time.

Weeks 26 - 52 - I did a full year of treatment. Every day I did 9 mcg's of INFERGEN plus 800 mgs of ribavirin. I took all of my pills right on schedule. Milk thistle, compazine, lorazapam, ambian, welbutryn, paxil, vitamin e and vitamin C. Blood work was done about once a month during these last 6 months. My blood counts remained low - my body adjusted and I was able to function pretty well around the house. The brain fog never really did get better during treatment. I was weaker emotionally and could not concentrate as I once had. The 9 month PCR and the 12 Month PCR both came back UNDETECTABLE. I lost 30 lbs and ended up wearing a wig in the end. 365 Shots - I was ready for this to end.

It took about a month for me to regain most of my brain power back - I say most because it truly took about 3 months for my head to clear. A month after I stopped treatment I went back to work. It was amazing how quickly I regained my strength and agility. The headaches continued for about 6 months - but overall I bounced back from treatment very well - with no long term size effects.

Post treatment 6 months PCR - UNDETECTABLE Blood counts normal, liver enzymes normal. TSH normal.

Post treatment 12 month (1 Year) PCR - UNDETECTABLE. Blood counts normal, liver enzymes normal. TSH normal.

No long term effects - except maybe the dragon is dead now. I would do this again in a heartbeat. I don't want any of you to think I suffered though this - was a challenge that I took on willingly. With the love and support of my family and friends I made it through what I thought I had to do to save my life. I would do it again tomorrow. I thank my Doctor for being courageous enough to do the right thing and I thank everyone on line for being with me every step of the way. I've given a pretty detailed account of my symptoms - but I want all to know that the medication I took elevated most of them so that I could function daily. If I had to have worked during the last 6 months of this - I probably could - I was fortunate enough not to have had to. This was definitely the right thing to do.

One last note that I would like to add is this. When my son Connor was 3 months old, we had him tested for the HCV antibody. Unfortunately it came back positive. My year or so of research had told me that this was normal, and in fact, the antibodies that he was carrying in his blood were mine. We had him tested again at 1 year, and again it was positive for antibodies. I had to fight with my pediatrician to get him to back off - he was convinced that the antibodies were his own and in fact he should see a specialist. We actually had arguments where he told me I was wrong. Finally - after waiting 2 years - we had Connor tested for the antibody again. We had decided that if the antibody was still there after 2 years that we would indeed then, have a PCR done and look at our treatment options. Fortunately by age 2 - the antibody test came back negative - I was right once again - and all along those were my antibodies that were hanging around in his blood stream. ( I made that pediatrician eat his words.) He is antibody negative today and as healthy as a horse. My daughter - who is now 12 and my husband who is 37 is negative as well.

Peace and Love to you all.

Theresa (Tree)


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    Page last updated: March 7, 2003

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