Failure Land

I wasn’t sure what I was going to do about my blog after failing treatment. For a long time after stopping I was in a daze. I referred to it as “walking though failure land.” I had no idea what my future would be. What was to become of me now? This fog lasted for much longer than I would have hoped. I still can not say that I have broke free from it. One day it will not be too bad and then the next I’d be back drifting through Failure Land. I was unsure what to say. Why just write to say that I was lost? Then I decided that since this was part of my experience living with Hep C that I would write about it. I began to write a posting, filed it away, and then forgot about it. Since then things have changed. The most recent changes happened just a few days ago. So I realized that if I was going to post an update, the old one was now out-of-date. I am even unsure about this posting. If it ends up getting posted then you’ll know what I decided. I will include the ideas from my old copy, but will have to abbreviate it.

So what happened immediately after stopping treatment other than my zombie like state? During the appointment when I was told that treatment was being stopped, I was also told that there was a study being done that my hepatologist thought I would be good candidate for. I waited to hear back about the study but had no idea how long to wait since I had no information about it. When would it start? Am I looking at weeks, a month, three months, or closer to a year? After a few weeks I called the clinic and they were unsure. Then a few weeks later I called again and they said that there was no study. I was confused over what happened. How could there be a study one week and then a few weeks later there be none? I didn’t get any answers. I wondered if it was because I was co-infected but I could not get any information if that was so. It actually was confirmed to me just two weeks ago quite by accident. I saw my HIV physician for the first time since stopping my Hep C treatment. He told me that he had heard that a new drug would be approved for use in Canada in 2011, so at that time I could take another shot at treatment. Then he casually mentioned that they have not allowed any trials on co-infected people yet. So I had my answer. They must seen that I had HIV and therefore I was unfit as a participant.

Another thing that has happened since ending treatment is that I have a new family doctor. The one I had before I got just because he was seeing new patients. I never got along with him though. My old doctor from Montreal moved to Toronto, so as soon as I could I switched to him. I saw him for the 8 years I was in living in Montreal and I was fond of him. He was also the doctor who diagnosed my Hep C plus he was there to see me at my worse in my addiction and saw me get sober. So I was very glad to finally get a family doctor who I like. The difference between him and my old doctor is like night and day. For the two years that I saw my old doctor not once did he do blood work on me. I asked him several times if he wanted copies of my CD4, CD8, HIV Viral Load counts and so on. He always refused saying that he didn’t need to know them. That was information that only my HIV physician needed to know. When I raised the idea that should he not know the state of immune system to look out opportunistic infections, he would brush it off.

I have been with my new (also old) doctor for a little over a month and already he has done a full array of blood work, wants my HIV physician to keep him up on my immune system and has had an ultrasound and CT scan done of my abdomen. The first thing he discovered was that I’m still anemic, I am low in B-12 and my testosterone is low too. So I am getting B-12 shots and testosterone shots. My hope is that this will help with my low energy. At least there is a plan now to address it where before it was brushed off by my old doctor.

As happy as I am about having a doctor doing a full array of blood work it has caused some stress. It started a week after I had my first appointment and had the blood taken. I got a call from his office that sounded kind of frantic. They wanted me to get an ultrasound of my abdomen the next day. It turned out that the lab was booked so it done the day after that. It is always concerning when you get a call from your doctor that feels like “We need this test done and we need it yesterday.” So I had my ultrasound done but I had to wait a week before I saw my doctor again to find out what the fuss was all about. It turned out that a marker for liver cancer was high. Not as high as a person who actually had lesions, I was told, but high enough that we should do a CT scan just to rule that out. So I got my CT scan really fast. Especially compared to other experiences that I’ve had with our healthcare system. I saw my doctor on Wednesday to get my first my first testosterone shot, so I hoped that he had the results. Otherwise I’d have to wait until my following appointment to find out what they found out.

I was feeling good going to the appointment. I expected that I’d go, get my shot and if he had the results I’d get a clear slate and off I’d go. I really expected that since it was a “just to rule things out” test that they would find nothing. I got my shot and then I asked if he had gotten my results. He had but hadn’t really had a chance to read it. So he pulled it up and looked it over then. I was quite taken back that it reported finding several lesions. My liver gets looked at a lot and I always have a cyst on my kidney and of recent years have fatty liver, but I have never had lesions. Their thoughts were that they were benign tumors or hematomas. My doctor is a little concerned. He had a patient much like me when he was in Montreal. He consistently showed up clear, but went from hematomas to “something really bad” as my doctor put it in a few weeks. So he is keeping a close eye on me. He did more blood work and he said that if the markers are still high, or have even higher he’ll order a MRI to get a better look at them. I wonder if his concern is from a lesson leaned hard, or what the story was with this person who went from hematomas to something really bad. Had the hematomas showed up and then like several doctors would have done they ordered test in three to six months and things were really bad by then? Is his concern from a once burned scenario? The mind wanders. What ever happened to this patient, I am glad that I have a doctor who is staying on top of it.

So after getting this news of course the mind wanders, pondering my medical history. I explained my concerns to my doctor. I find that my liver damage has speeded up the last few years. When I was first diagnosed I had grade 1 liver inflammation. Then just before I started treatment I had grade 4 inflammation. In the past few years I have had fatty liver that I didn’t have before. So I see the increase in damage to my liver going up like a chart. I can very easily see these hematomas graduating to fibrosis and then cirrhosis. Since the news is so fresh (getting it four days ago), my mind is still absorbing it. To help me with this process, I lost a good chunk of my TV channels on Thursday. My cable company discovered that I was getting channels that I was not entitled to and they cut them off. I had no idea that I was not supposed to have them, I even called them to find out why I didn’t have them anymore. So within a 24 hr period I got this medical news and lost my favorite channels. So now my mind is juggling between, my medical future, and can I afford an extra $30 a month to get my channels back? I will make another posting after I get a more clearer picture of what is going on.

Cheers until then,

David McHep C