July 20, 2004
Good News and Bad


Been a long and busy couple of weeks....got Boo ready for camp, and off to camp, and back again, and survived her 12th birthday, LOL.....got some cleaning and laundry and house rearranging done in preparation for treatment....alternated between incredible fatigue and frustration and a sense of accomplishment, and back and forthed between overwhelming self-pity and the belief I am strong enough to get through all this....not sure which actually won out....I think it's a tie at this point!

Went to the doctor today, which was a mixed blessing....my case has gone to a couple of new doctors who I like a LOT better than my old one, and who seem to be a lot more knowledgeable and sympathetic - and who appreciate the fact that I am knowledgeable, too, and am taking an active role in my treatment. (The old doc was of the "trust me, I'm the doctor" school of thought, and saw any questions or concerns that I had as being my "attitude"....sheesh!) One of the new docs (Dr. P) is the head of the HepC unit at the hospital the clinic is associated with, and definitely knows his stuff, and the other (Dr. M) is still in residency and learning, but is eager to learn, and not offended by the fact that there were several things that came up today that I knew and he didn't, LOL! So, I'm pleased with them, and they're pleased with me, and that makes the whole thing a lot easier, since I'll be seeing them at least twice a month for the duration - at least none of us will develop ulcers over our association - and I feel like I will be getting a much higher level of care!



And a higher level of care is apparently what I'm going to need, since Dr. P is of the opinion that there's more liver damage than previously thought....he says I have "compensated cirrhosis", which means that the liver isn't doing its job, and as a result the spleen and kidneys are working overtime, which puts a strain on everything. This apparently accounts some for my very low platelet count, when the spleen goes into overdrive, it develops a voracious appetite for platelets - which is also why platelet "transfusions" won't help, the spleen will just see it as an "all you can eat buffet" and pig out until the platelet count is back where it was to start.

At first, Dr. P was leery of starting me on tx, since the drugs will adversely affect the platelet count - he said he didn't like to treat with a count of less than 130, and mine's only 84 (although 84 is an improvement from a month ago), but on the other hand, he didn't want to see any more liver damage done, which would only make the spleen even hungrier. He told me that given my viral load (over 4 million) and genotype (1a), he'd only give me about a 30% chance of a "cure" - and I pointed out that even if I didn't clear completely, it would still stop and possibly even repair some of the liver damage, which would obviously help the spleen situation....that was the point where he realized I had a good grasp of what was going on and reasonably realistic expectations, and decided that based on my "knowledge, dedication and commitment", we'd go ahead and start tx next week - with the provision that I come in every week for a platelet count, and if it consisently drops below 50, we may have to take me off tx until it goes back up.



So that's where we sit as of tonight.....Schering has my Rx form and will be shipping my meds out tomorrow, and I take them to my appointment with Dr. P next Tuesday to learn to prepare and do the shots, and get my final pre-tx instructions, and my first shot will be Thursday, July 29 - the end of the world as I now know it.

Not sure how I feel....I've already accepted and psyched myself up for tx - at least as much as it's possible to psych yourself up for the complete unknown....I'm tired of life being "on hold" and at least now can look forward to doing something, even if it's an incredibly unpleasant something....I'm concerned that I'm in worse shape than I thought, but glad I at least now have a doctor who knows what he's doing (that I feel like I can trust, probably because he didn't tell me to, LOL)....and at least I have another week before the world ends to get some more stuff done around here, since I probably won't feel like doing it later.

Meanwhile, I'll just follow doctor's orders....somehow I just have to like and respect a doctor who's upfront enough that his last words to me today were "We'll see you next week, don't worry for now, just go home and enjoy your last week of normal life", LOL!



Email me at "hepcjourney # mindspring.com"
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