Weeks 9 and 10 are a mix of news and emotions.

It looks like I am doing another 2 week posting. Well, it has been a busy time. Last week the clinic wanted me to come in person to see if we could get my nausea under control. One thing that concerned them was that my nausea could be a symptom of thyroid problems. Supposedly the interferon can make toast of your thyroid. One of my blood test showed some difficulty going on with my thyroid. So they did more blood work on Thursday and I had and ultrasound done Friday. Now I have to wait for the results.

My doctor says that it is rare, but they have had some patients develop thyroid problems. When that happened they needed to stop treatment right away. “I’m not going to continue treatment and leave you without a thyroid,” was his words. Supposedly most people’s thyroids repaired themselves when they stopped the treatment. So I have been holding out on making the next posting, hoping that I’d get some news.

Well, it is Monday night and time for shot #10. I forced myself to go to half of my long-term survivor’s group tonight just so I could get out on the apartment for a while. I am sick and tired of being stuck inside for the last 10 weeks. It was nice to get out, but exhausting too. It was nice to see my group though.

I walked into a drug the deal on the way to the bank before the meeting. I walk slowly, so that is part of the problem. I could see the group waiting ahead and I knew that they were picking up. As I walked towards them two rather large guys came up behind me and then passed me. I was sure that the crowd was waiting for them. Just as I reached the crowed the guys reached them. There was a big truck parked and I couldn’t walk out on the road. So I had to push myself through the deals. My heartbeat took off for a while. I have not experienced what I understand as Riba Rage from the treatment, but it came close today. Part of me wanted to give them a piece of my mind. Not very wise though.

So tonight I did shot number 10 and I guess I’ll update more after I get my thyroid results.

Cheers,

David McHep C

Look who is a quarter of a century old today, an anniversary comes with some disappointing news

25 years ago David was surprised with the news that his body now had a new member. Although he was surprised the news was not totally unexpected. The new member came complete with a name and that was HIV. He was born in a time much different than today. Before 1985 he would have remained hidden. A new test that came out on the market in 1985 made it possible to discover this new addition. I’m aware that the viruses swimming around my body today are not the same virus from 25 years ago. He died ages ago, but his descendants have been fruitful and multiplied a lot.

It was not easy to get tested for him at that time. There were no drugs available that would eradicate, or tame him. Although David asked, no doctor would order the test. “Why give you a diagnosis if I can’t do anything about it?” was the mantra. At that time the doctors would test for HIV only if you were showing symptoms to confirm a diagnosis. David wanted to know regardless. He did have an ace up his sleeve though. He was friends with a nurse who worked at the Hassle Free Clinic. That clinic was the only place in Toronto that had anonymous testing. They too would only test if you were showing signs of a weakened immune system though. Knowing how much David wanted to know, his friend told him to come into the clinic and he would perform the test. “I know that you aren’t going to jump off a bridge if I tell you you’re positive,” was his response. Positive was the result.

Early on things looked grim. The advice given at the time was to prepare for the end. A time of 18 months to three years maximum was given. So David did as requested and prepared for the end. Some of his friends were also diagnosed and true to form they were gone within three years. Each death brought thoughts of a new future scenario. As each friend developed a horrible infection, then the possibility of getting that infection became a worry. When each of his nephews and niece were born, David was overwhelmed to see them but then also felt sad that they would not know him. He expected that they would be too young when died to remember him. As the years passed, more friends died and his nephews and niece grew up.

So after waiting and waiting, 25 years later David remains. Technically he doesn’t know the actual date of the infection or test, just that it was spring 1985. So March 15th seemed like as good of a date as any to mark the event.

As for my other virus, tonight will be shot number 8. My nurse called today after finally getting my Hepatise C (HCV) Viral Load (VL) results for week 4. To say it was disappointing would be an understatement. It has hardly budged. As I mentioned before, at 4 weeks an undetectable result would be the ultimate. If not undetectable then the next best would a 2-log drop, so for me that would be 400,000. I have barley budged though. I went from 40 million to 32 million. That now means that if I am not down to at least 400,000 by week 12 they will stop my treatment considering it a failure.

I have read that people who are co-infected with HIV and HCV are slow responders and should consider 72 weeks of treatment. That would be lovely (not that I want to feel sick like this for so long), but since my drugs are covered by the province of Ontario this is not an option. I’ve been told that if I was on private insurance that I may be able to get 72 weeks covered, but that the province just won’t do it. Those who say that Canada doesn’t have a two tier health care system obviously do not deal with it. I’ve known this since the early days when I was diagnosed. Back then many new drugs were available in the US and those who had private insurance could get them covered through creative paperwork. Since I was on government insurance I always had wait until it was approved or take part in a trial. Often when the trials ended the drug was no longer provided to you. So again, those on a private plan did not have a problem, but those like me would have a period when the drug was no longer covered. So I am well aware that our health care system is not level for everyone. Knowing that doesn’t make it any easier at times like this when it really hits me.

Besides this news, I am still dealing with nausea. The nurse was going to contact the doctor today to see what he was willing to do about it. I finished the antibiotics and I am taking my Gravol at regular times, 4 times a day, and the nausea still is a pretty bad issue. I haven’t actually vomited for a while, but I feel on the cusp most of the time. Activity makes it worse so I feel pretty anchored to home.

I am posting this before I do my injection tonight. They have become routine by now. That is it for now. I will report any changes or news as it comes.

Cheers,

David McHep C

If I weren’t a little paranoid where would I be now?

I will take my first injection Monday unless some unseen force interrupts it. It has been an amazing week with concern on my part being the only thing preventing mishaps or delays.

Actually it began even longer than a week ago as I look at previous blogs. First the Section 8 was sent out on November 19th and a start date of December 9th was set. As we got close to December 9th I began to worry because the drugs had not arrive yet so I called out of concern. Then I found out that my Section 8 was not approved yet. Had I not worried the nurse would have shown up on the 9th and I’d have nada.

When I got home from the holidays I got word that my Section 8 was approved and that information was passed onto the nurse. She called me and we booked a new start date of January 25th. The only thing that should have interfered was if my doctor and I decided to try pre-dosing. The nurse told me that the information had been passed onto the pharmacy so to wait for their call. I was even told not to put them off and do my best to be available for the delivery. So I waited for the call.

By Wednesday I was getting worried. I only had three weekdays left before my new start date. To make things worse I had doctor’s appointments Wednesday and Thursday. When I called the pharmacy they were taken by surprise. It turned out that the information had never been sent. So a few frantic calls and the information was sent to them. The pharmacy was a little worried that there may not be enough time to do the paperwork. Because I was on ODSP they had some hope though. Had I been on other insurance programs like Ontario’s Trillium Drug Program or a private plan it would have been impossible and the start date would need to be changed again.

I did see my Hepatologist today but he was not willing to try pre-dosing. My understanding is that the government approves the way I’ll be treated. This is the approved treatment plan where as the pre-dosing is not officially approved. It is still somewhat experimental. So if I wanted to try another way of treatment it is not covered. I’ll take what is covered. When I got home I called the pharmacy and they were able to get the paperwork done so my medications will be delivered tomorrow. Then the nurse will come on Monday to do my first injection.

It frustrates me though that had I again not felt nervous, and had I waited too long for a call the nurse would be setting up yet another start date. It really has been daunting. I am about to start this treatment and there have already been a number of problems with communication. It makes me worry that if I am hit hard by side effects I may not have the energy to make calls and run around if there are further communication problems. The medical teams do not seem to keep in touch with each other. Information is passed onto someone but there is no follow-up to make sure the information was acted on. It really reinforces to me how you need to have an advocate or you will fall through the cracks of the medical system. Hopefully these hiccups were starting pains and things will be smoother now. I’ll update when I do my first injection on Monday.

Cheers,

David McHep C

P.S.
I am also a little concerned that no one will be doing blood work for my HIV. I've been told that it is not necessary but personally I'd feel a lot better if my CD4s, CD8s, Ratios and HIV Viral Loads continued to be measured. The Hepatologist says that my CD4s will drop but not to worry because my percentage will remain the same. I asked him if shouldn't I continue to be tested so if my CD4s dropped below 200 I could start preventative treatment for various infections. He claims that this has no impact. That people on treatment will have their CD4s drop below 200 but they don't get PCP infections. Call me a nervous Nellie, but I would still like to keep an eye on things and have the option to choose prophylactics if I want. I'll call my Primary HIV Physician or Family Doctor and see if they will continue to order the test for me.

All I want for Christmas is my Section 8

Well Christmas is almost here. A while ago sister asked me what I wanted for Christmas (I guess that she was planning her shopping list) and I could think of nothing. So I just left it up to her. In past years when I couldn’t think of anything she always seemed to find something that I liked. In recent days I have been thinking that there is one thing that I would like for Christmas and that is having my Section 8 approved by the government. I know that my sister cannot help there. Knowing that it was approved would really do a lot to put my mind at ease over the holidays. It would be nice to have the knowledge that everything was set and ready to go in the New Year. Now I am still left hanging unsure when, or now I must admit even ‘IF’ treatment is going to start.

I called the Hepatologist’s office today to see if perhaps my Section 8 was there and they were just waiting until the New Year to tell me. They will be going on holidays in two days for about a week. No, my Section 8 was not waiting for me there. They did tell me that two weeks ago the government asked for more information. This was new information to me. It is news like this that gets me a bit nervous. I have been told by the clinic that the Section 8 is just a formality and that they have never had anyone refused before. I have had some bad luck with the medical system before so part of me thinks, “With my luck I’ll be the first refused.” I will set a new pressident. A few months ago I was refused a Section 8 to cover the cost of one of the new HIV drug that had just been approved. So I’ll try not to think too much about it but I know that it will be on my mind over the holidays.

I am pretty tired today. I had an ultrasound for my abdomen early today. I planned on getting it done and then going back to bed as soon as I got back home. It was bitterly cold this morning though (-19 degrees Celsius wind-chill) and since I live downtown I live in a wind tunnel. The winds must have been from the north so I was walking into a strong head-on wind the whole way. Even though I had the winds to my back coming home by time I got back I was wide-awake. Nothing like a good blast of cold to wake you up, or sober you up, or cure all kind of ills. So it took a while to finally catch some more zzzzzz’s and get some rest.

The only other news I can think of to report is that the Olympic Torch passed through town last week. I went to Yonge Street and College Street to see the relay. It was to be passed to an 81-year-old man who was the goalie on Canada’s gold medal winning hockey team for the 1934 Olympics (I believe it was 1934). It was to be passed to him at College Street and then he was going to get on a College street car as part of relay. Then just before the torch was to reach us a protest took over the street. So for the first time in the torches’ Canadian relay the relay had to be stopped. See, just like I said earlier, “With my luck.” They put the flame into a bus and then took it over to the city hall. So we did not get to see the relay. My energy levels are too low to have gone over to city hall.

(Protesters prevent us from seeing the torch)


I had one of my insomnia nights and I was actually up around 7am the next morning when the torch was passing by near here to leave the city. So I threw on a pair of pants and bundled up and headed over to see the flame. Unfortunately I was so tired and so cold that I could not change my camera setting from nighttime exposure to daylight. So the slow shutter speed meant that I didn’t get a good shot of it, but I did see it.

(These are two of the blurry image pictures of the torch that I managed to get)


So I will be going to see my family tomorrow. That means that I’ll be off of the grid for a while since I don’t have computer access there. I’ll really have nothing to report until I hear about my Section 8 anyway. For those who celebrate them have a good holiday.

Cheers,

David McHep C

What will I be doing tomorrow?

Tomorrow is December 9th. As I mentioned in my last post, December 9th is when the nurse was booked to give me my first shot. This past weekend I began to worry. The nurse was booked to come on Wednesday but I still did not have the drugs. Because of the way she said it, “You’ll have your drugs by then” I assumed that I would have the drugs here waiting for her. Perhaps I assumed incorrectly and she was to bring the drugs with her I thought. So on Monday I called the clinic to find out what was going on. They had to look up my records first of course so they told me that they would call me back. They called me back soon and told me that the paperwork to get it covered by the government had not come in yet.

One thing I discovered, when I moved back to Ontario from Quebec around three years ago, was just how many drugs that were covered there were not covered here. According to the Canadian Health Act, health-care is supposed to be consistent across Canada although the provinces are responsible for providing it. Anyone who has moved from one province to another is fully aware though that not all provinces are created equal. When I made my first trip to the pharmacy after moving here half of my prescriptions that were covered in Quebec were not covered in Ontario. So that meant rushing to see the doctor to see what substitutions we could try. This has been an issue with treating both my HIV and my Hep C. Just recently my doctor wanted to start me on one of the new HIV drugs recently approved. It would have meant fewer side effects, fewer complications with the Hep C drugs and would be easier on my liver. The government has not added the drug to their formulary so it was not covered. There is a process of last hope though. If you can prove that you need this drug and there are no other options for you the drug may be covered. The form that needs to be filled out is called ‘a section 8.’ So when I use the term ‘waiting for a section 8’ I am using the language used here to explain that I am waiting to hear back whether the drug will be covered or not. In the case of that new HIV drug, my section 8 was refused. Although there are no other drugs used to treat Hep C you need a section 8 to have it covered because of its high cost. So when I called the clinic on Monday and asked what was happening what they told me was that my section 8 had not come through yet.

Shortly after talking with the clinic I got a call from the nurse canceling our Wednesday appointment. Since the timing of the section 8 is uncertain and the holiday hours are upon us she was unsure when we should re-book. So she has left it at, "We’ll try and do it around the middle of January."

So I was feeling a little deflated. This is the second time that I thought I had a start date just to have it pushed back. I psyche myself up each time, getting ready to start, so it is a let down when it doesn’t happen. Being let down twice makes it even more daunting. I had mentioned in one of the forums on The Nomads website that I might not announce another ‘official start date.’ Next time I may just wait until I do my first shot and then announce I had started. We’ll see how it evolves.

In one way the delay is a blessing. I now don’t have to worry about side effects of the treatment interfering with my holidays. Also, I was reading the other night that people should have all of their immunizations up-to-date and be up on their dental cleanings before beginning treatment. I was able to get my seasonal flu shot yesterday and today I booked a teeth cleaning for Monday. So in one way this has worked out for the best. What has been a point of frustration for me, other than revving me up each time, is my hope that the sooner I start then the sooner I’ll be finished. Originally if I had started on my first official start date I would have finished up in early fall. I've been worried that if I have a hard time with side effects that I’ll be giving up my summer. I had hoped that if I finished earlier then I might experience a few warm days before next winter hits. Now there is no possibility of that. By starting in the middle of winter I’ll be finishing early winter next year. Mind you if the side effects are tolerable then this will be mute point.

So that leaves me with the question I started with. “What will I be doing tomorrow?” I will not be starting my treatment. We are supposed to be getting hit by our first storm of the winter, so I have stocked up on supplies and will rest and stay warm. I’ll also be talking with my caseworker at The Toronto PWA Foundation to put off the services that were to be used during my treatment to next year. The same story with ACT (The AIDS Committee of Toronto). It is great that I can do these things over the phone and stay warm. So that will mean that I probably won’t have a lot to report now until the New Year. If my section 8 comes through I’ll report that.

Cheers until next time,

David McHep C