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

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.

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

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.

The end of the video backlog.

This video that I recorded after events September 22 & 23, 2009 finally clears out the backlog of videos that I had recorded earlier. Any postings from here on will be up-to-date postings. I just wanted to get all the videos stored in my 'video diary' folder posted. This video is a delayed report of my trip to The AIDS Committee of Toronto) ACT and what I accomplished there. It also poses the question, "Is HIV a help?" I do mention a urine test redo. I talk as if I am following up on something mentioned in the September 19th report. I was mistaken. I never mentioned it before. My bad.

An embarrassing situation

I recorded this video on Sept. 19, 2009. It really took a lot of soul searching to decide if I would mention this embarrassing situation. Part of me fears being so open about this. Releasing this is something that I hope I won't regret later. I was not going to publish this but then I remembered my words in my first posting. 'The good, bad and the ugly. This is still something that I am struggling with. There actually was a period of time where it almost appeared as if it was resolved. Then it reappeared. The diminished hopes and aspirations are still there. Of course my hope is that someday it will be resolved. I do use the wrong word at one point. I say 'past' where I meant to say 'future.' Not a big deal but I want you to know that I was aware of this slip of tongue.

It feels more tangible

This is a video that I recorded on Sept. 17, 2009. All the call backs that I was waiting for came on the same day. It made it all feel more tangible.

Video, Sept. 16, 2009 - How I got here

There are some videos that I made and put in a folder for a video journal. This is the first one that I made. This was very soon after I found out that I'd be treating my Hepatitis C. It is a little long, but I was trying to cover over 20 years in as little time as possible. I do have correct something that I said. At one point I say that my liver enzymes were 600 times above normal. They were actually a little over 10 times above normal with my ALT being over 600. You will see why hair loss and weight loss do not frighten me.

My first posting! You always remember your first

Hi,

I have Hepatitis C and HIV and I am currently getting ready to start treatment. I have been playing with the idea of keeping an on-line journal of my experience. I was also debating whether it should be a written journal or a video journal. I think that I’d prefer to do both. I want a forum where I can add videos if I want and write entries if I want. I met a woman through an online forum (Not what you may be thinking, I’m Gay). The site is called ‘The Hep C Nomads’ @ http://www.hepcnomads.co.uk/phpBB3/index.php. This site has been a huge help to me. I have found out many new things and found support. Anyway this woman’s video diary planted a seed in my mind. So I thought why not do it myself only mix video and text?

On top of recording my treatment I also I wanted to record the preparations. Up until now I’ve been sitting on the fence about making a blog. That was until tonight. I currently have a Facebook account but I have never been one of those people who upgrades his status. “What is on my mind?” Who cares what is on my mind? So tonight I thought, “I am updating my status, I am coming out to them all that I have Hep C and I am letting them know of my battle ahead with treatment. Well, my message was too many characters. So I have come to the conclusion that if I want to start an online journal I may as well start now.

What was I typing on Facebook that was too long? I live in Canada’s largest city. The population estimates go from close to 3 million or 4 or 6 million if the larger area is included. So when I first found out that it was time to start treating my Hep C my first action was to find a support group. I was diagnosed with HIV back in 1985 and one thing I learned early is that having a support group is extremely helpful. Through Web searches I found that in my province (Ontario) there are support groups in Durham County (Oshawa), Hamilton (My old home town), Windsor & Essex County, Niagara Falls, Thunder Bay, Waterloo and lastly York Region (Unionville, yes it is as small as it sounds). The largest city in Canada and the capital of Ontario is absent. I asked every HIV/AIDS organization about Hep C support groups but they knew of none. I asked people I know who have Hep C and none of them knew of a group. I asked my doctor and he said that there are none but added, “You may want to start one after you finish your treatment.” That would be helpful for future ‘treaties’ but still does nothing for me.

Then I had a lifeline thrown to me from an unexpected source. When I couldn’t find support at home I checked out the Internet to see if I could find support there. It actually started on Facebook. From there I was directed to an online forum called The Hep C Nomads @ http://www.hepcnomads.co.uk/phpBB3/index.php. As I mentioned above, I can’t say enough about the support I’ve gotten through this site. To my surprise one of the members from The UK, of all places, sent me a link for a support group in Toronto. Having someone from across the pond find me a group not only on my continent but also in my city blew my socks off. So with my start date for treatment getting really close I thought today that I best check out that link and get myself hooked up.

I immediately found the site a little odd. It didn’t seem to me like most sites that I go to that are from community groups. First, when I went to their links they were all to large US organizations. This was a little odd to me since it was a Canadian site. The link to “Information about Hepatitis C” took me to a business that sells medical stuff. The other links were similar. There was a mention on the home page that support groups were offered from time to time, but there was no mention about where, when or anything else about such groups happening. They also said that there was a fee of $20 to become a member. Your $20 covered the cost of a newsletter and event mail outs. I guess fair enough but in my twenty years of dealing with HIV organizations I’ve never been asked for money to receive services. So I took the bait and sent them an email. It was bounced back. So I thank Ross for the lifeline. There is no way he could have known that it was all closed down.

So this is why I wanted to rant tonight and why I was persuaded to start a blog. I did think to myself, “Why should I blog?” Why would anyone want to know what I am going through? On the other hand it would be a way for friends and family to know what is going on with me. After tonight I know that Facebook is useless for that unless I can limit all my shit to 420 characters or less. I could keep in touch with people by email. To be truly up-to-date that would mean sending out mass emails. Not everyone would necessarily care to read them. Plus I am not the greatest person when it comes honestly telling people what I am going through. I can’t find myself sending emails to people telling them the good, bad and ugly that is happening in my life. Since I want to keep a journal anyway this way I can keep my log and if some one is curious about what it going on they can just check the blog. It is very voyeuristic. Friends or even strangers could watch my progress and not have to be intimately involved. Very WASP of us all. So that is what I’ll do. I’m not computer literate so I suspect that I’ll have troubles with my set up and such. I’m sure that there will be a few changes made at first.

One of the reasons I thought of a doing a blog in the first place was to use it as a tool to help me get through my treatment. Also I guess that if others were interested they could see one persons experience with it. The treatment for Hep C can be very difficult with debilitating side effects.

Side effects that may occur with Hep C treatment are:

fatigue or tiredness
muscle aches, may feel like the flu
headaches
poor sleep
nausea and loss of appetite, which may lead to weight loss
Irritability, tearfulness
depression
bone marrow suppression, leading to changes in the blood counts as in anemia
hair loss (hair comes back)
rash
mouth sores

I have known some people who have taken the treatment and their experiences are all over the board. Some claim to have had it not too bad. One person I know would do his shot Friday night. He was pretty sick the day after and would start to feel like he was ready for work Sunday night. Others have been really, really sick and start feeling better pretty much in time to do their next shot. I don’t mind losing my hair. If I add videos you will know why. I wouldn’t mind losing weight. Again, if I add videos you will know why. Mind you I’m not too sure that losing it because I keep puking is ideal. Some of the other side effects I already have been dealing with or dealt with in the past related to my HIV and side effects from HIV medications. Ironically I think that living with HIV for as long as I have has possibly helped prepared me for this journey. I have previous experience with the nauseous, mouth sores and rashes. Unfortunately I understand that the side effects from the Hep C treatment don’t really compare equally.

Since the genotype for my Hep C virus is 1b (one of the hardest to treat) and add to that my HIV I’ll need to do my treatment for 48 weeks. Although I just read something last night that recommended that if people who are HIV+ don’t respond to treatment by 24 weeks, treatment should be extended for another 6 or 12 months. It would depend on your situation. How bad your liver damage is and whether you are willing. I will try to provide more detailed info on treatment and Hep C later.

So this is my first post to the blog. As I mentioned before I hope to figure out how to add video so I can mix the two. I think that a total video journal will prove too difficult. This way I can write when I am not up making a video. There is a screen name that I use on the Hep C Nomads site and I have become fond of it. So I’ll sign off as,

David McHep