My thyriod and I are friends again

The nurse called me today to let me know that my thyroid test were fine. So now I just have Week 12 HCV VL to worry about.

Cheers,

David McHep C

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

Talk about brain fog

I have to apologize again. It looks like my first injection was on January 25th. That means that I did have the other postings correct. So Monday night was injection #7. I've gone back and removed the corrections that I made to the titles yesterday. Now that means that I have screwed up my blood work. I'll have to call my doctor and figure out my schedule for blood work. I should be doing it again at week #8. Well, let's hope that this brain fog does not get worse. I know that some people on The Nomads, the online forum I participate in, have complained about having it pretty bad. That is it for now. I just wanted to clear up the mess that I made with my last posting.

Cheers,

David McHep C

Shot #6: Yes #6, I’ve been confused (No wait, #7 was correct)

I noticed that I have been confused about the number of my shots. When I did my blood work today I realized that tonight’s (Monday) injection was number #6. Somehow I must have been really confused when I did the posting for shot #4. I still don’t know what happened there. I did the math though and the shot I just did works out to #6. I did my first one on my birthday which was February 1st. Then February 8th was number #2. Number # 3 was on February 15. February 22nd was shot number #4. Shot number #5 came on March 1st and now number #6 happened tonight March 8th. So the math confirms that this was shot #6 and not number #7. Perhaps it has been a case of brain fog. That is supposed to be one of the possible side effects. So I apologize for the confusion. I guess that I’ll have to add the correct numbers in brackets.

As far as side effects it is still mostly the nausea that I am dealing with. I made it to the hospital to do my blood work and then made it home. I still often feel as if I am on the cusp, just about to vomit. I should call my nurse tomorrow to let her know that things are still rough. I’ve been taking the Gravol at the prescribed times so I’ve given it my best shot. That is all I have to say for now. I will update when I get my results from the blood work I did at week #4.

Cheers,

David McHep C

Shot number #6: This emotional rollercoaster is making me sick

I was going to make another video of injection #6 but then thought better of it. More so because it was so late when I thought of it, that it was much faster just to do the injection than set up the camera to record it. You’ve seen by now that there is not much to it anyway.

One of the side effects that you get warned about is increased moodiness. Usually the warning is about increased agitation or rages. I have to admit that I have a few incidents like this. Usually I get frustrated with a situation. For example there is some sort of pump or generator running around here. I can’t figure out if it is in my building, a tenants unit, or at a construction site near by. It runs 24/7 and it is frustrating at bedtime. The thumping noise keeps me from falling asleep and wakes me up during the night. There have been nights, like last night, where I felt like getting dressed to go on a quest to see if I could find the source. I don’t know what I would do if I found it, but I would like to know just where it is coming from.

The emotion I notice more is sadness or melancholy. I sometimes feel as if I am experiencing the mood swings that a pregnant woman may. I’ll see a story on TV that is sad and I tear up and feel like crying. In the past these stories would probably give me lump in my throat, but I would not feel as affected as I am now. The Olympics have just finished so there were tons of warm fuzzy patriotic moments that had me choking back tears.

It is not only these pre-package TV moments getting me going. I’ll have memories from the past just materialize out of nowhere. A few days ago I was watching TV (That and sleep is all I do these days) where out of the blue I had a memory of hurting my Mom. I can’t even remember what the specific thing I did was. There was just this memory that I had hurt my Mom that came out of nowhere. Then I was a little consumed with sadness that I had done this thing and hurt my Mom. I was able to shake it after it had sat there for a while, but it was kind of strange. I still have times during the day, or night, that this memory will hit me. As I said, I can’t even remember what it was I said or did, but I just feel bad that I did it. Memories of old friends will materialize out of nowhere and my tear ducts well up.

These side effects are not as frustrating as this never-ending nausea. I just can’t seem to get a handle on it. For some reason looking at the computer screen makes the nausea worse. Hence, I did the injection on Monday but it is not posted until Friday. The doctors have tried tweaking my prescriptions, but so far no improvement. Yesterday my nurse came by and bought me some ginger pills and lozenges but they have not made a difference yet. So now I am on a schedule, making sure that I tale the Gravol at consistent, regular intervals. This way when she talks to the doctor next time she can confirm that I have tried taking enough Gravol and at prescribed intervals and I am still having trouble. So I will spend my weekend carefully taking the Gravol and adding the ginger to see it things will improve.

They had an interesting story on the news last night about people in Ontario and British Columbia purposely damaging their livers to accelerate treatment. It seems that Ontario and British Columbia have the tightest rules regarding who gets treatment. I am not one of those who accelerated liver damage (It did it all on its own the little devil), but I can understand the desperation. Earlier I fought hard for treatment but could not get it. This time it was the doctor who finally wanted to treat.

That is all I have to say about my life at injection #6. I will post again if I get more information. I am still waiting for the results from my 4^th week blood work. My other virus will celebrate a big milestone around the 15^th, so I may talk a little about that closer to March 15.

Cheers,

David Mc Hep C

Shot #5: Another video injection and vomiting makes it debut

Injection number #5 is down and gone. Now we’ll see what side effects I have. “Sock-it to me Mama!” On Saturday I actually started to vomit. I’ve been feeing just on cusp until now and then it finally happened. So here is a video of injection number #5. As I mentioned on the video, my nurse called me today and told me that she’ll ask my doctor whether we should try intramuscular injections of Gavol and see if that my gets the tummy under control. I’ll update if there are new side effects, or there is a resolution of others.

Cheers,

David McHep C

Shot Number # 4, A video of a manic Monday

Tonight I did injection number #4. I thought that I better make my posting tonight, since there is no way of knowing how it will affect me. After shot # 2, I was hit pretty hard by side effects. So much so that I never got around to making a posting about shot number #3. The side effects from shot number #2 continued right through and into shot number #3. The worse side effects are insomnia and nausea. I saw my Hepatologist on Thursday and he gave me some sleeping aids and a drug that they give to people on cancer treatment for the nausea. My over the counter anti-nausea pills did nothing. Because this was my all-important fourth shot, I now need to make it to the hospital this week to do my Viral Load (VL) test. The results will decide whether my treatment will continue. As I mentioned before, if I have an undetectable result I am a quick responder. Others have mentioned that they like to see at least a 2-log drop, so my 40 million down to 400,000 would be nice, but my nurse says that any drop would be good. If there is no drop, then they may ask me if I want to stop. My nurse feels sure that there will defiantly be some sort of drop. I noticed today that my weight is down by over 10lbs so perhaps that is a good sign.

I decided to videotape this injection just to show how I spend my Monday nights. So here another Monday passed.


P.S: I should add that I did my Week #4 VL test on Thursday, February 18th. I have an appointment with my nurse on March 8th when we will discuss that results and how it will affect the future of my treatment. I also finally saw and ENT Specialist who is located in Toronto and so far I am happy with him. He has put me on a high dose of antibiotics for the next 3 weeks. They will also do a CT scan and then discuss whether further surgery may be necessary. It was a trying day energy wise, but I feel good about it.

Cheers,

David McHep C

Second Shot, Same As The First, But A Little Bit Harsher And A Little Bit Worse:

First I have a correction to make to my last posting. When I was talking about blood work and Viral Load (VL) calculations, I said that my VL was 14 million so a 2-log drop would be 140,000. Well, my VL is actually 40 million so a 2-log drop would be 400,000. Don’t ask me where the 14 million came from. There was never a 14 million count. I would like to blame it on brain fog, but since I had only been on treatment a few days… I got a clarification from my nurse yesterday too. As much as they would like to see around a 2-log drop, or undetectable would be even better, any decline is good news.

After my last injection I may have tooted my horn to soon when I said I hardly had any side effects. I felt OK the first night and most of Tuesday. Then Tuesday evening I began to feel a little achy. Like you feel when you are coming down with a cold or the flu. It lasted a few days and then I began to feel fairly normal before my next shot.

Yesterday my nurse came here to watch me inject myself. That went even smoother than I thought it would. As I said before I started treatment, I have a large canvas to work with, lots of surface to move from site to site. I have noticed that the site of the first injection has developed a small red rash. It isn’t itchy or anything, I just noticed it when I looked at it. Yesterday’s site is just a little bruise right now.

As for my reaction to this shot, last night I felt kind of nauseous and agitated. Both interfered with falling a sleep, or staying asleep. At first, I just had trouble nodding off because of the nausea. Then after I finally fell asleep, I woke up from the agitation. Then the agitation made it difficult to fall back to sleep. I also had a little trouble with my teeth chattering. It wasn’t much of a chatter but just enough to notice it. I woke up once during the night sweaty so I had to get up and dry off some before I could fall back to sleep. I tried napping today but I still have a bit of that chatter. I don’t know if it is caused by the agitation or because of small fevers. I know that I still feel kind of agitated, but I also switch from feeling hot to feeling cold when I lay down. So I am not sure what is causing my chatter. I am hoping for a better sleep tonight. I have an appointment on Thursday and I don’t want to go to it feeling whacked.

That is all I have to say for now. I’ll report more as I feel it necessary.

Cheers for now,

David McHep C

My big fat non-event

I had my first injection yesterday. The pharmacy delivered my medication on Friday. I wasn’t able to do pre-dosing with my doctor, but I tried starting the Ribavirin two days early. I’m not sure if it will make any difference because I am not sure of how long it takes it to build up in your blood. Two days may not be long enough to help. I thought that an extra two days might help a bit though.

Yesterday at 4:00pm the nurse came to give my first shot. She also showed me how so I can give myself injections from now on. I also have a little instructional DVD that I am to watch a few times this week. Out of concern she is going to come back next Monday and watch me inject myself to make sure that I got it. Then she is coming the following Monday to look over my blood work. She says that I need to do blood work next Monday or Tuesday and then every two weeks after that for the first 4 months. I may have to do it more often if there is an issue. I am starting out with low hemoglobin already so that may be an issue.

At week four I do the Oh so important first Hepatitis C Viral Load (VL) test. If I am undetectable (have less than 50 copies of the Hep C virus in a measure of blood) then I am considered a quick responder. This would be most good. I would attempt a cartwheel if this happened. If I’m not a quick responder then they would want to see at least a 2-log drop. I still have trouble with this so I am going to take a bit from another blog, Ending the Stigma @ http://endingthestigma.blogspot.com/. If my VL were 100 a 2-log drop would mean a drop of two digits or going from 3 digits to 1. So 100 would go to 1. A VL of 1,000 would mean going from 4 digits to 2 so 1,000 to 10. Now I am not too sure what will happen with me since I am starting with a pretty high VL. My last VL was 14,000,000 (yes 14 million). So if I were to have a VL of 140,000 I would basically pass. Whew! This is the first time that I’ve done the math. That is quite a drop. I’ll have to do some serious finger crossing.

So what happened after the injection? Nothing really. It was really a non-event. I felt a little warm and sweated a little but not much. The nurse told me not to be surprised if I didn’t have a reaction to the first shot. She kind of inferred that some people don’t get them until the second, third or even later shots. So I told everyone that I didn’t seem to have any side effects. My Facebook status boasted that I lucked out. Now I have to admit that I may have tooted my horn a little too early. Today I feel a like you do when you are coming down with something. A little icky and a little achy. To make matters a little worse I was unable to get much sleep. I have a neighbour with mental health issues and she chose today to go off her meds. She spent most of the morning and a bit of the afternoon yelling things out in the hall. I’m not sure if she was talking to anyone or to the invisible people she talks too when she goes manic like this. I didn’t dare look out to see. The last time she did this she spent all weekend throwing her furniture out into the hall. Sofa, bed, tables, she must have been sleeping on the floor. Back then they took her away on Monday and she was in the hospital until she came back a few weeks ago. She was quiet so I thought that she had gotten level on some meds. So today is just like the last time. She is quiet for a while and then one day explodes. I hope that they get help for her quicker this time. The last time I was like a prisoner in my own apartment, being too afraid to encounter her in the hallway. I worry that she’ll hurt herself or someone else when this happens. So I am a little beat today after not getting much sleep.

Other than the ickyness from the injection the pills are kind of messing with my stomach giving me some gastrointestinal )GI side effects. Pretty well all of my HIV meds have come with GI side effects. I have spent the last 13 years of my life not wanting to be too far from a bathroom. Things seemed to have balanced out for the last few weeks. Now the Ribavirin has knocked things out of balance again.

I have two feelings when it comes to side effects. The first and most obvious one is, “Yipeee, I dodged that one!” The other feeling I have is that some side effects may be a sign that there is a big battle going on in my body. I had an experience with one of my HIV cocktails that made me feel this way. There was one cocktail that when I first took it I was pretty sick for the first two months and then things levelled out. I went off my meds for a while and then when I restarted them I was again pretty sick for two months. I took another holiday from the meds and when I started them for the third time I told my doctor that I knew what to expect. That I would be pretty sick for two months and then I’d adjust. I started the meds and nothing happened. I asked the doctor if that could mean that they were not working anymore. He said not to worry and that you can take a drug and have side effects and then another time not have any. The first two times I took the cocktail my HIV Viral Load dropped immediately and my CD4s skyrocketed. This third time my CD4s rose excruciatingly slow. It took me over a year for my CD4s to get back to where they were before I stopped the meds. A few years later my doctor said that I probably did develop a little resistance to the drugs and they were less affective now.

So I will see how this develops. Who knows, next Monday I may have posting saying “Yipeee! I feel like crap.”

Cheers,

David Mc Hep 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.

Perhaps I shouldn’t have taken the risk after all

I was a little worried that by mentioning a new official start date I may jinx it because of past experience. Well guess what? I have a new start date and even it is a little tentative. This time I am the one to blame though.

I called the hepatologist today to see if pre-dosing with Ribavirin was an option. The nurses had not heard of it so they asked if I wanted to hold off on my start date until I saw the doctor. I asked when I could get in to see him and it fell after my previous official start date of January 19^th. Not by much though. So this is the schedule for now. I will go in and see the doctor about pre-dosing January 21^st. Then I have a new date for the nurse to come on January 25^th. If the doctor does not want to do pre-dosing then January 25^th will be my new start date. If he is for it though the January 25^th appointment will be changed again. Poor nurse.

I have a suspicion that the doctor will not want to do pre-dosing. I am a little worried that it will create a new mess where a new Section 8 would need to be approved to give an OK to pre-dosing. I have a list of selling points to use from a member of the Nomads online forum that I participate in. It is just after hearing about pre-dosing and its potential I felt that if I am going to do this I want to give it my best shot. If I went ahead and didn’t even try to see about pre-dosing then I’d always worry that I didn’t give it my best shot. This way, even if it is refused, at least I tried my best.

So for now I’ll refer to January 25^th as my tentative official start date, to become my start date if I start on that date. That’s not confusing at all. I’m sure that I’ll have another update after January 21^st.

Cheers until then,

David Mc Hep

Dare I take the risk?

I have mentioned before that when, or if, I got a new start date for my treatment I may not mention it. I had a fear that by announcing it I may jinx it and it would be changed on me once again. People may begin to think that I am yanking their chain. Then tonight I got a surprise phone call. More so because it is a Sunday night than I was not expecting this call. It was the nurse calling to set up a date. There is a little history to this call.

I had hoped that I would get the call telling me that my Section 8 had been approved before I left for my families place for the holidays. It never came though. The holidays came and went. By the way I enjoyed the time with my family. The holidays have changed for me since getting sober. In the old days I would always spend Christmas with the family and then come back home to spend New Year’s Eve partying in the big city. Now I spend a week or more with my family. It is a quiet time but a good time. I know so many people for whom the holidays are a horrible time. Some because they are lonely, and others because they hate spending time with their families and feel obligated to do so. My family seems to be able to spend time together and not get at each other’s throats.

Sadly a friend of mine’s mother died just before Christmas. I emphasize, DIED and not passed away since I know from some of his blogs that this was important to her. He has written some stories about his mother in his blog and I have been reading them. They make my eyes tear up and it takes me back to thoughts of my late mother. She died right after Mother’s Day on May 14, 2002. One thing he talks about in his blog is how his family enjoys each other’s company when they get together. He attributes this to his mother always making sure that they did things together as a family. It has had me thinking about how my mother always had the family play card or board games together. We made trips to Prince Edward Island as a family. How my parents managed that one I’ll never understand. Well enough about my holidays. They were good, but because of my friend’s mother’s death, mine was on my mind a little more this year.

I hoped that when I got home, that ever-elusive message that my Section 8 was approved, would be waiting for me. It was not. There were 21 messages though thanks to a miscommunication with my building. My building provides some services for the tenants. One thing that they do for me is call me to remind me to take my medications. When I left I told them to suspend the calls because I was going out of town. Since I was not sure when I was coming back I told them that I’d call them when I returned. So it was a little surprising to have 21 medication reminders waiting for me. Not one message was about my Section 8. I was a bit worried though that they may have tried calling but the mailbox was full. I have no idea how much it will hold. So I called the clinic the next day. They didn’t know the status but told me that they’d call back later that day. They didn’t so I just assumed that they’d call the next day. By the afternoon of the next day I was a little nervous that they forgot about me so I called back. This time they called back soon and told me that my Section 8 was approved and they had contacted the nurse. So I was expecting her call but since it is Sunday I expected her to call me tomorrow at the earliest.

So I now have a new start date. It is January 19, 2010. My Section 8 is approved so the only thing that should change it now is, a natural disaster (we’ve yet to have a big snow storm yet), or if they change it for some other reason. There is one other possible thing that may change it. Me! In the forum, the Nomads, that I participate in there are quite a few members who are doing a new style of treatment called pre-dosing. It involves starting the Ribavirin two weeks before starting the Pegasys. The idea behind this is have the blood saturated with Ribavirin before starting the Pegasys. So I plan on calling my hepatologist tomorrow to see if he has heard of this and if he would consider trying it. If he is I may try this route. My feeling is that if this may increase my chance of success then it would be worth it. I already have a poor chance of success so if this will prevent me from having to try another run at treatment in the future then it will be worth it. So if anything changes I’ll have to make another update before my planned injection January 19th.

Cheers for now,

David Mc Hep C

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

I almost made one milestone

Sorry that I didn’t add this post when I promised to. I had a bit of a set back when my pneumonia knocked me on my ass longer than I had hoped. I finished the first round of antibiotics but the pneumonia stayed. So I went back to the doctor’s and they did an x-ray and gave me another stronger antibiotic. I just finished those yesterday. I am not too sure that the pneumonia is finally gone. Perhaps by the end of this weekend I’ll know. Last year I had pneumonia three times. I moved to Toronto last fall and since I moved I had not experienced pneumonia so I was hoping to make it through to the end of the year without having it again. That is now one milestone that I won’t make. My sister believes that I may have jinxed myself by telling everyone that I had hoped to make this milestone when the cough first surfaced.

Amazingly, despite fighting this pneumonia I do have quite a bit to report. My appointment with the Hepatologist went off as re-booked. I was still pretty sick but I didn’t want to miss seeing him again. So I went and wore a mask. We discussed starting the treatment. There were some options that I was unaware existed. First, I could choose which form of interferon I wanted to use. Either Pegetron or Pegasys. The Pegetron requires mixing the drug before injecting it with a syringe. Pegasys comes premixed in Epi-Pen like devices. So that is great for me. I’ve been a little nervous about having syringes around the house. I was a little worried that they may make me anxious and lead me to a relapse. Another option I had is that I could either go to the clinic for my injection or the nurse can come to my place to do it. That again sounds good to me. People I know who have done the treatment have told me to expect to get chills and sweats about 15 mins after the shot. I was wondering what the likelihood was of me getting the shot, jumping in a cab and then getting home in time was.

So my Hepatologist filled out the forums to get the treatment covered while I was there. He also faxed the association for the nurse and told me that it usually takes 4 weeks or less for everything to fall in place. The next day I got a call from the nurse. She believes that I’ll have the drugs by December 9th, so that is the day that she will come here and show me how to do my first shot. I also found out about a very important policy for the clinic. Treating Hepatitis C can cause the haemoglobin to drop leading to anaemia. On The Nomads forum that I participate in I see that how that is dealt with depends on where you are being treated. Some clinics offer a rescue drug called EPOETIN or PROCRIT which helps increase your blood cells. Other clinics don’t seem to offer it and will just do a dose reduction of the Hep C drugs. Everything I have read suggest that using the rescue drug leads to a better outcome (Hep C wise) than doing a dose reduction. When I asked my Hepatologist what they do there he said that they give the rescue drug. “Anything to avoid a dose reductions” was his words. So that was comforting.

So everything seems to be falling in place. Right now my emphasis is on getting this infection cleared up before I start. I really don’t want it to come back once I start. I will update as events warrant it.

Cheers,

David McHep C

Virus Wars; Episode V, The Fever Strikes Back

I ended up having a bit of set back today. I woke up today feeling really crappy. My fever of 39 Celsius came back with a vengeance, so there was no way that they wanted me at the Hepatologist. So the appointment with the Hepatologist needed to be canceled. The city as well as the country are on high alert because of H1N1. I called my family doctor and even they were unsure how to handle me. The receptionist thought that I may have to go to the emergency. On the news the head doctor for the province was warning people not to go to the emergencies. It seems everyone wanted to pass the buck. So my family doctor called me back and asked me to come there. I had to mask and they put me in an isolation room right away. The outcome is that they are treating me for pneumonia. I started a strong antibiotic today. I take two pills today and then one pill a day for four days. Hindsight is twenty twenty, but I wish that I had gone to the doctor on Tuesday and did not wait as long as I did. Today I was in rough shape, having trouble breathing and alternating between sweats and chills.

The good news is that my appointment with the Hepatologist was re-booked really soon. One week from today. I really feared that it would have been several months. So I am happy about that. I am hoping that something will happen overnight and I'll start feeling better tomorrow. Don't have a lot to say because I still feel pretty rough. So my update on treatment will be delayed one week. I'll update everyone then.

Cheers,

David McHep C

Green Light From Shrink

This will be a short posting. I even thought of waiting until I had more to report, but then thought better. I had my appointment with the Psychiatrist yesterday but did not feel up writing anything until tonight. The psychiatrist (with his intern and student observing) decided that he could see nothing that would prevent me from being treated. So he is sending a recommendation to my Hepatologist that I can begin treatment right away. He is also asking the Hepatologist, my family doctor and HIV specialist to keep an eye on me and report and changes in my mood or behavior. He has also recommended that if I need to go on an anti-depressant that they try one called Ciprolex. According to him, this drug is one that is easier to come off of after the treatment is finished.

It was a relatively painless process. Of course there is no physical pain. I have had several procedures done that were high on the physical pain scale. These intakes with psychiatrist and counselors always entail reliving and opening old wounds though. Fortunately because I had just gone through an intake with another agency I had just opened those wounds a few weeks ago. It made this intake a little less painful. There are some events that are pretty big, like the incident that lead to my PTSD. Recounting that episode is always on the difficult side. Although because I had recently recounted it, I had an easier time with it. It was like I was on automatic pilot. I got through it without my voice breaking and having to stop and breathe. I hoped that they did not take from that, that I was free from emotions.

It would have been a great day, passing one more obstacle towards treatment, but I became incredibly ill after getting home. I have what feels like a chest infection. I had my H1N1 shot last Tuesday and then the following Friday I started feeling like I had a chest infection. I had pneumonia three times last year and with the end of the year so close I was hopeful that I'd get through this year without developing it again. So on Monday when I got home I was feeling pretty bad. I was going to try and make a video entry but I just felt too sick. I checked my temperature and I was a high 40 degrees Celsius. I wasn't sure what to do with all the news stories about H1N1. Did I not have enough time to develop immunity to it and was exposed, or is it something else. As luck would have it, I woke up this morning in drenched clothing but with no fever and my appetite was back. I've checked throughout the day and the fever has not come back. So I guess that it broke while I slept. Ironically I felt as though I was getting a preview of treatment. Most people have told me to expect to get chills, sweats and a fever soon after the injections. So I found having these symptoms at this time very ironic.

In two more days I see the Hepatologist to get the treatment for my Hep C rolling. I am hoping that I shake this bug before then since I believe that they won't start the treatment if I am ill. I am anxious about starting treatment, but also anxious to get the treatment started. The sooner I start the sooner it will be over. I most likely will not make another posting until after I see my Hepatologist on Thursday. Till next time.

David McHep C

A chronic pain in the.............

Another day, another posting. That is three days in a row. My surprise appointment with the Pain Management Clinic happened today. The doctor's opinion was to keep doing what I am since it has the pain under control. I asked him if he could think of any options other than morphine. He said that there are some but that he would not prescribe them to someone with Hep C. His feeling is that I should keep taking what I am and then when I finish my treatment we'll reassess my treatment then. Who knows, if the treatment works I'll have more options.

He mentioned medical marijuana (it is legal here). I told him that a few other doctors including two neurologist had mentioned it to me. They all say that it is supposed to be good for neuropathic pain. I told him what I told them. The morphine I take is a low enough dose that I don't get a buzz from it. Anytime I smoke pot I get baked and I don't want to feel that way. Not only because I am a recovering addict, but also because I can function taking the low dose of morphine. If I smoke pot I'll curl up into a ball and be too paranoid to leave my apartment. Other doctors have told me that if you eat it you don't get stoned, but friends of mine who use have said that they get more stoned if they eat it than if they smoke it. I'll believe them.

So I will stay the course until I finish my Hep C treatment. I was a little pissed when he looked over the referral that was sent by my doctor and revealed why I was referred. My doctor wanted him to asses if I was abusing narcotics. Trust me, I have abused drugs. I have wasted them, battered them and spit them out. My relationship with morphine is not abusive.

When I first moved to Toronto and hooked up with this doctor, he was upset that a doctor had prescribed morphine to me. It threw me a bit because I had never heard one doctor criticize another doctor's decision. I find that they are very good at protecting their own. I explained to him that it was not like the doctor just threw the drugs at me. It was a year of trying everything. Several drugs that are used for neuropathic pain were tried. Finally I got a little relief with Lyrica but the pain although a little diminished was still unbearable. The doctor contacted my Hepatologist to see if we could increase the Lyrica (I was at the maximum recommended dose), but he said that he couldn't give his approval because of my Hep C. So our only other option was to introduce pain killers. After going two weeks with no sleep, because of the pain, I finally got some sleep when we introduced morphine. I told my doctor that in all fairness he was not there when I went these two weeks without sleep so how could he question the decision of the doctor who was there? No answer. So to hear that he just wanted assurance that I was not abusing narcotics (and here I thought he was worried about my chronic pain) upset me a little. For the record the pain specialist told me that he was telling my doc that I am not abusing drugs.

I did learn something new. My doctor (the referring one) has told me that morphine doesn't work for neuropathic pain. I have proof though that it is working for me. Twice, I had a day when my pain came back big time. Both times I was a little freaked out thinking that the neuropathic pain was back. "Oh no, don't tell me that the morphine stopped working" was my thought. Then when I took my evening pills I discovered that I forgot to take my morning pills. Both times. So I knew that it definitely was working for me. I ask the pain specialist about that today. He explained that the Lyrica helps with the prickling pain but doesn't do much for the burning pain. The morphine is good for that. That is why I need the two together. So I have my answer. I am not nuts.

This was not the first time that I have felt like I was judged by a doctor because I was honest about being a recovering addict. I feel that it is important not to lie, or hold back information from doctors. I want to be totally honest with all doctors so they'll have the complete pictures. I feel that this has in the past kind of come back and bit me. I have felt an immediate withdrawal once I have mentioned it. The doctor will be warm and friendly and as soon as I say that I am a recovering addict there can be a physical distancing between us. If I am having a procedure done and I am in pain I sometimes feel that I am denied pain relief because there is an assumption that I am fishing for drugs. Please! Having a coloscopy done to get some narcotics is a bit extreme.

So I was feeling a little burned when I left the pain clinic today. If I was a closeted addict, or recovering addict, most of these doctors would treat me totally normal. Like they should. By addressing my problem and getting treatment I get a label and treated differently. No good deed goes unpunished. Isn't that what they say? As I said, I believe in being totally honest with medical practitioners but honesty comes with a price. Lying or withholding information can seem like the answer. Ignorance is bliss. Another saying. I do want doctors to know that I am recovering addict. I want them to be aware of it when it comes to prescribing anything addictive, but shouldn't they be cautious with everyone? Lots of people who do not identified as addicts, are. I don't like becoming a pariah because I was honest.

Regardless of why I was referred to the pain clinic, I am glad that I was. I now have my foot in the door, and I will see what options are available when I am finished treatment. Perhaps I'll get through an appointment with the referring doctor without a lecture on why I shouldn't be taking morphine. I've known for two years now that I am not abusing morphine. I think that fact that I have been on the same dose for so long says that I'm not trying to get high. There are small 5mg pills that are prescribed for breakthrough pain. I think the fact that 30 of them will last me several months shows that I am only using them when absolutely necessary. Since he is the prescribing doctor, he should be well aware of that.

So has this paranoia about me using pain killers come because I am honest about being a recovering addict. We can be painted with a broad stroke. Aren't we all not to be trusted? Aren't we all thieves (if anything goes missing immediately look at us)? This broad painting goes beyond the medical system, but I perhaps foolishly expect them to be more knowledgeable. Call me naive, but I don't like to feel punished for honesty. Those I know who are not addicts question this phenomenon. Am I just paranoid? Could I just be making this up. Perhaps in this case, but I have seen a close relationship go south as soon as I came out so to speak. I have seen a doctor who was warm and friendly suddenly become cold and distant when told. I don't know how to end this post. Situations like this will continue to arise. I refuse to be dishonest or withhold information. That is not the kind of person I am. As much as I hate getting whacked on the knuckles for telling the truth, I will continue. There are several medical practitioners who are knowledgeable and treat me well. The few stand out because of how bad judgment feels but I refuse to let them change me. So to this day and in the future I will remain a no need to ask I will tell you, recovering addict.

Until next time,

David McHep C

The second posting; A little less memorable

Hi everyone,

It is not necessarily my plan to journal everyday. But last night as I was posting all the videos that were made previously, I noticed that there were some issues raised and perhaps should be updated.

First, that CPAP machine that I had such hope for. I've suffered from severe fatigue for the past three years. When I was diagnosed with sleep apnea I was elated as strange as that may sound to others. I was happy that a cause was found and now that I had the machine my fatigue will be gone. Because I am on a government drug plan (ODSP), only the cheapest mask was covered. When I did the study they used a mask that plugged my nostrils. The mask that ODSP covered, covered your face. I have never had such an immediate response. I woke up the next morning and there was a rash on my face. Anywhere the mask rested on my face was red and raw.





This is how the ODSP covered mask looked.





















So I had to go back to the sleep disorder clinic and have them write a letter explaining to the government that I needed a different mask. Then ODSP covered a new mask for me.



I'm not sure where these photos will show up when this is published. Right now all the data for them appears at the top of the page. This will be a learning experience for me. Well, back to my CPAP machine. My dream of increased energy didn't really materialize. I use the machine to prevent my breathing from stopping, but I am still tired all the time.




The second unresolved issue was the bed wetting. In the video I am wondering if my sleep that night is going to result in more laundry. Just for the record things were fine that night. I seemed to have again fallen into a grace period. I had no problems since that video was made until last week. There was another underlying issue that may or may not be a factor in this. I mention in the video that I was diagnosed with a kidney infection. I finished the Cipro but recently I have noticed symptoms returning that I had back when I was dealing with that infection. So who knows if the two are related. I just did another urine sample but haven't gotten the results yet.

I also mentioned about reading something connecting incontinence with Hep C. I know some people I know have questioned what I read because they had not heard this. I just want to explain that this write up connected this to kidney damage caused by the virus. The kidney and liver work together, so I guess an attack on one is an attack on the others.

Lastly I want to explain where I am sitting right now when it comes to services from the various HIV/AIDS organizations. ACT has me set up with the Good Company Lunch program they run. They also believe that they will have a buddy for me soon.

I also made a trip to The Toronto People With AIDS Foundation (PWA) and they have set me up with a food program they run called Food For Life. They provide frozen dinners that are delivered to me once a week. So now I don't have to worry about having to cook if I am feeling like crap. I fill out a menu every week and the food is delivered the next.

That pretty well covers those issues mentioned in the videos. As for how I am doing today, I had a pleasant surprise today. I am always called on Wednesday to confirm that the Good Company Lunch is happening and if I am coming. I never got a call yesterday so I was unsure what that meant. I called this morning but I got voice-mail every time. So I was unsure what to do. With all the H1N1 fear going on, could the facilitator have the flu so it was canceled? So since it was cold and rainy anyway I stayed home.

Right around the time I would have been going to lunch I got a call from the Pain Clinic. I have neuropathy so I was referred to them almost a year ago. I waited for about 4 or five months before I heard from them. They sent me a questionnaire to fill out and mail back. That was 3 or four months ago. So I was quite pleased to finally hear from them. They were calling to book an appointment. I could only assume how far down the line that was going to be. But they had a surprise for me. There was a cancellation for tomorrow and as luck would have it I am free. So I will finally get in to see them. The hope is that they'll know of a way other than morphine to treat my pain. I know many will jump to the conclusion that my fatigue is because of the morphine, but I was hit by the fatigue about two years before the morphine was started. I will adjust to the morphine resulting in gradual increases so finding something else would be advantageous.

So that is it for my second posting. I can't wait to see where those pictures show up.

Cheers,

David, McHep C

PS. The photos did not go where I wanted them to. Perhaps next time.