Well here we go again. This journal will cover my treatment with Pegesus/Ribavirin, a study being done at USC. This is a long term study, and could wind up being one heck of a long journal!!

I went to USC in August 2000 and met with the study coordinator, Susan Milstein. What a wonderful lady. She put me right at ease with her terrific sense of humor and positive attitude. Her assistant, Lilly, is from Germany and I love to listen to her talk. They both assured me that this was THE study to be in. (of course, it's the ONLY one I actually qualify for!) Susan also told me that if I wind up in the group that is only monitored, I would have the option to go onto any new treatment that may come down the pike. Actually, anyone in the study will have that option.

First things first, I had to fill out a TON of paperwork. I also had to agree to doing the "extra" studies being done in conjunction with the HALT-C study. I could have said no to them but I figure what the heck? The cognitive study and the study on how the side effects actually AFFECT us should be very interesting.

They drew about 17 viles of blood out of me that first day. I was surprised at how tender my veins are. I guess they get that way after a couple of years of being stuck so often. I have no idea what a couple of the tests were about, but I listed them nonetheless on the Labs page I'll be keeping. Maybe someone else will know and can enlighten me!

I spent about 3 hours at USC that first day, and they even provided a lunch for me. What a deal, a turkey sandwich, friut, OJ, cookies, and chips! It was a good thing too, because I had to fast for the bloodwork and by noon I was starving!! After the paperwork was all filled out I had to list my eating habits. This was quite an indepth questionnaire. They told me I would be filling out these kinds of questionnaires all throughout the study.

Once finished with all that, I was sent on my merry way. Another appointment was set for 6 weeks later to meet with Dr. Karen Lindsay, who runs the study and would be my doctor. I left with a real good feeling about the whole thing and was anxious to get started.

My September appointment was a physical exam by Dr. Lindsay. She is a terrific lady. She did a full medical exam and asked a TON of questions. She did say that she is fairly sure I did not get my HCV from Larry. I never thought I did, though. They naturally drew more blood this time too. After the exam, Dr. Lindsay had some things I needed to get done before starting the study. Because there is Retinitis Pigmentosa in my family, my oldest sister has it, I had to get my eyes dialated. I also needed a chest x-ray, EKG and mammogram. I guess they want to make sure we are healthy before bombarding us with these wonderful drugs.

In October I had to see the Psych doctor. He was real nice and asked alot of questions about depression, my general emotional health, and how I felt about doing the study and having HCV. I guess I passed because we then went on to another batch of testing. This was done on the computer, asking all kinds of weird questions. They wanted to know my fears, drinking habits, any drug use, and any depression.

My next October appointment was for the Cognitive Testing. Talk about a stress test! First they give you a list of 12 words to repeat back to them. If you forget any, they tell you them, then you have to repeat ALL of them again. I did this over and over, forgetting a word every time! Finally, about the 10th time around, I got them all right! Then they show you a bunch of pictures of designs. After they show them all to you once, you have to tell them which ones you have seen before. THEN you have to tell them how many TIMES they showed you the same ones. After this test, they start telling you numbers and you have to repeat them. Then they give you numbers and you have to repeat them BACKWARDS to them. I did alright on the backwards ones. Of course, all during this testing, I had to ask 3 or 4 times when I would have to do this again! Luckily, we only have this testing again at the 6 month point. After 6 months on Riba I should really impress them!

At the end of October, I found out I would have to have another biopsy. Susan had submitted my April 2000 biopsy hoping the NIH would approve that one, but since it was not done 6 months after my last treatment, they wouldn't accept it. I'll have the biopsy done at USC Medical Center on November 2, 2000. They make you spend the night, for whatever reason, so I ordered lobster for dinner. Susan laughed. I guess that isn't on the menu. Susan did tell me that she would start me on the treatment the week following the biopsy, so as long as it comes back with no cirrhosis on it, I should begin this thing finally.

The day I go in to get the meds, I will have more bloodwork done and a baseline PCR QUANTITATIVE test done. It will be interesting to see what my viral load is, because I haven't had one done since about July. When I get the biopsy results, they will be posted here and I'll continue to post all the labs that are done. Because this is a study, I have to be sure to keep all interferon viles to return to USC. I guess they want to make sure I took it all!