It has been a very busy week. I’ve received big news, but just haven’t been able to think of any words. I’ll go through the week chronologically to help me think.
On Wednesday I got two frantic calls from two different doctors. Both sounded desperate, asking to see me in one or two days. That always is reassuring. The next day I had an appointment with the Hepatologist. My feelings concerning my Viral Load (VL) were correct. My week 12 VL was only down to 23 million. No where near the two fold drop needed in order to get the government to continue paying for the treatment. So I was pulled off of treatment.
I have felt kind of numb ever since, and not so much in the mood the talk. Those who know me, know I talk a bit much, so perhaps friends are enjoying this quietness. Part of me feels bad that I went through all those rough side effects with no benefit. Also I am angry at the system here. They made me wait so long before they would treat, that now I am in a scary situation with no other options. Had they treated me when I first wanted to my VL was at 4 million. Perhaps I would have responded better. Knowing that I had a VL of 4 million then and one of 40 million at the start, makes me wonder what may have been. Plus I had grade 1 liver inflammation when I first wanted to treat, and they made me wait until my inflammation was Grade 4. So my mind is full of what may have been scenarios.
The Hepatologist started out by telling me that there are treatments 5 to 10 years down the line. I told him that I have been hearing that for the past ten years and the drugs are always 5 to 10 years away so I did not hold much faith in such things. Then he said that there was a study that he is sure I would qualify for. The study involves taking the same two drugs as before but adding a third. He says that there are quite a few, like me, who did not respond to treatment, but then responded well to this. So he said that he would give them my name. I didn’t feel any urgency so it feels like it is a situation of months if not years before it would begin. I really wish that they could have just kept me on the treatment and added that third drug now. My body has partially adapted to the side effects so it would mean less stress on me. Now I will be off the meds so my body will adapt to not having the drugs in my system. When the study finally comes available, I’ll need to go through the stress of re-adjusting to the meds again. So I’m not happy over any part of this situation.
The other rushed appointment ended up being a false positive. So it was good news, but a flutter of fear initially. I always show up as a false positive for Syphilis. This has gone on for years. This time though I showed that I was positive for three antibodies which was a huge change, and something very dangerous. I usually test positive for just one antibody. That is how they know it is a false positive. After looking closer at the results, a typo was noticed. I had the singular antibody that I always have, but it was entered incorrect. Whew! Dodged one there.
The past week was full of stress. I still feel numb and totally uncertain about the future. I worry that liver problems will interfere with my HIV treatment. Again, something that would not have happened if I had treated earlier. There doesn't seem to be any clear answers. What will I be blogging about now that I am no longer treating the HCV. I guess that I can still blog about my battle with the pesky virus. Perhaps it will be more psychological than physical unless my blood work does something really wonky. If so then things will become interesting. That is all I have to report for now.
Cheers for now,
David McHep C
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