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.

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