tag:blogger.com,1999:blog-54913453344267308122024-02-19T02:31:22.658-08:00My big fat Hep C journal(Pt. II) A HIV/HCV co-infected man's battle with one of his pesky virusesI am co-infected with HIV for over 25 years and Hepatitis C for over 10 years. I have not be able to get treatment for the Hep C since being diagnosed. Now they say that I have liver damage and need to treat.
There are earlier postings. For some reason when I bought a new computer I could not post on my old blog. So I created this new blog and added a link to the old one. So if you are interested just click on the "My big fat Hep C journal" link to view those older postings.David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-5491345334426730812.post-2575815969655708902012-09-01T17:29:00.000-07:002012-09-01T17:29:54.479-07:00My useless bucket list<br />
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<span style="letter-spacing: 0.0px;"><b><u>Bucket list. Hollywood creation and fantasy, or real.</u></b> </span></div>
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<span style="letter-spacing: 0.0px;">I’ve been thinking about Bucket List lately. I can’t sleep tonight, and keep losing at Solitaire (my natural state) so I thought that I may as well put my ideas down.</span></div>
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<span style="letter-spacing: 0.0px;">A number of years ago, no one had heard of Bucket List. After the movie it seems that everyone feels that if they don’t have a list of things to do before they die, and they do not have every thing checked off, they have failed in life somehow. I don’t know what my liver has in store for me. It may crash before this new treatment comes available. I was reading the other day that in Canada 47% of co-infected people still die waiting for a transplant. So my odds of succeeding in that are better than my chances at Solitaire. </span></div>
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<span style="letter-spacing: 0.0px;">Like all creations of Hollywood, money is never a barrier. So I began thinking of my own Bucket List and realized how ridiculously impossible it would be for someone on a fixed income like myself. Even the things that cost nothing or little at all seem out of reach. So I’ll make a list and of note what interferes with it. </span></div>
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<span style="letter-spacing: 0.0px;"><b>#1 - Make friends and build a support system. </b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘ It is hard when I can’t get out to make friends, and I still feel that people would not want to hang out with me since I’d slow them down and limit where they can go.’</i></li>
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<span style="letter-spacing: 0.0px;"><b>#2 - Be the phonee rather than the phoner.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘ This would hinge on making friends in the first place. If by some miracle this happens I’d like to (just a few times) be the person who is called rather than the person who calls. My friend John does call me from time to time.’ </i></li>
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<span style="letter-spacing: 0.0px;"><b>#3 - Take my 5 year cake for sobriety at one of the 12 step groups, AA, CA or NA. </b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘ It actually happened last year but I was Casey House then. It would depend on, getting to meetings (which is hard now). Plus finding a sponsor (which I have never been good at). I think that I’ve given up on this idea.’</i></li>
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<span style="letter-spacing: 0.0px;"><b>#4 - Experience a surprise birthday party.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘ First you need friends to pull this off. Can’t see it happening. I will be 50 years old this next birthday, but I have no memory of every having a surprise birthday party. One of my therapist in rehab suggested I organize my own, but then it would not be a surprise. This is one that I’ve hoped for over a decade. I have thrown tons of hints in the past, but I have found lots of gay men hate their birthdays so they believe that I’m a little nuts for wanting to celebrate one. Mind you there is the argument that once you are 10 years old then you are just childish if you like them. I read this from a columnist for a new paper once. I doubted that this columnist had been told that he had 18 months to three years to live back in 1985. To me every birthday has been a year that I am still around. I gave up throwing hints after about 15 years of trying. I spend my birthdays alone, and it is one time when I am the phonee and I get calls from my sisters and Dad.’</i><i> </i></li>
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<span style="letter-spacing: 0.0px;"><span style="letter-spacing: 0.0px;"><b>#5 - Go fishing with Dad.</b></span></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘I always hated fishing with my Dad when I was young. For the last number of years I have wanted to take him fishing just to spend some quality time with him (We won’t eat the fish, just catch and let them go). Back then I was healthy. Now both of us use walkers, so I have no idea where to go. Plus now you need to buy a licenses first, although there is one day every year when you can fish in special locations without one.’</i></li>
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<span style="letter-spacing: 0.0px;"><b>#6 - See Mom’s grave.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘I don’t think that this will happen. There is cost. The difficulty of traveling that far. Plus where I would stay while I’m there. I know that I’d be offered a sofa at a relatives place and that is great, but I’m beginning to feel that I’ll need to stay at a hotel for accessibility issues and bathroom and rest. It sounds insurmountable.’</i></li>
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<span style="letter-spacing: 0.0px;"><b><u>Now the crazy ones that will really never happen.</u></b></span></div>
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<span style="letter-spacing: 0.0px;"><b>#7 - See San Francisco one last time.</b> </span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘Need I say it, money, money, money. Accessibility is a bit of a problem too especially with all those steep hills. On the plus side a friend could come into town, stay with me and drive me around. This one will never happen.’ </i></li>
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<span style="letter-spacing: 0.0px;"><b>#8 - See Australia.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘Although I have never been, if there is one place I have always wanted to see it is Australia. All I can say is money, money, money, the travel time and my health. Plus, one of the disadvantages for here and S.F. is, what are the odds of meeting people when I am walking around with a walker?’</i></li>
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<span style="letter-spacing: 0.0px;"><b>#9 - Meet someone for a relationship.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘ I know this seems a little odd with the pie in the sky dreams, but it feels like this is not out of place. There are so many obstacles right now. How am I ever going to meet someone when I walk with a walker? Where can I meet someone, since I can’t get in most places? Where am I going to meet someone who doesn’t use drugs or alcohol? I have two strikes against me. I am HIV+, which hasn’t been much of a problem before, but I have noticed that even among POZ folk, co-infection makes them run. I have met HIV+ people who were quite flirty, but cooled right down when co-infection came up.’ Plus I am still dealing with issues from my last relationship. </i></li>
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<span style="letter-spacing: 0.0px;"><b>#9 - Dance.</b></span></div>
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<li><span class="Apple-tab-span" style="white-space: pre;"> </span><i>‘I made these two a tie. If I am stuck with with this walker for another 2 to 3 years, not only are there no places I can access, I can’t dance with the walker anyway. This also requires me to have friends to go with (not happening). Lastly, if my liver gives out before the treatment, and I can’t get a new one, this is just a pipe dream.’</i></li>
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<span style="letter-spacing: 0.0px;">The unfortunate part is that these things on the list seem impossible until I am more mobile. That will mean a new liver and/or the Hepatitis C being cured. By then the bucket list is kind of fruitless since it is supposed to be something done before you die. Once the Hepatitis is gone the urgency will be gone. So Bucket List yea, or nay? To me it seems nay, nay, nay. I feel bad that I am a real Debbie Downer in these postings and I hate that, but it is the real way I feel. When I am with people I mask it with lots of joking, but maybe it shows anyway and that keeps people away from me.</span></div>
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<span style="letter-spacing: 0.0px;">David McHep C </span></div>
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David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0Toronto, ON, Canada43.653226 -79.383184343.469412 -79.69904129999999 43.837039999999995 -79.0673273tag:blogger.com,1999:blog-5491345334426730812.post-38780528885203194942012-08-24T17:04:00.001-07:002012-08-24T17:04:23.977-07:00Update for August 24, 2012 - FrustrationFrustration is still a big deal for me.<br />
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The memory card ran out during my last sentence. What I was saying was that getting a home universal gym would defeat my purpose of getting out to meet people.<br />
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David McHepCDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com1tag:blogger.com,1999:blog-5491345334426730812.post-9053566321731647232012-08-01T15:22:00.002-07:002012-08-02T09:10:43.280-07:00Update For August 1, 2012<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/Ip6ef_oeBZc" width="560"></iframe><br />
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I was correct and I did forget some stuff. I was so tired after today I knew that I would. First, despite my frequent trips to the gym, my muscles continue to waste. It seems counterproductive but I enjoy going. Second, my fibrosis is now cirrhosis. Lastly, there was some fluid build up in my abdomen. I suspected this since I haven't put any weight on, but the last few weeks my abdomen has extended a bit. Also I am still a bit jaundiced. Those who know me and saw me before don't see it, but I guess that a medical eye catches it.<br />
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David McHep CDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-47824632998530029162012-07-22T19:46:00.002-07:002012-07-22T19:46:38.774-07:00Even My Sub-conscience Doesn't Trust My BodyA nightmare showed me that even my sub-conscience doesn't trust my body.<br />
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David McHep CDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-71420226218258892982012-07-16T18:07:00.005-07:002012-07-16T18:22:33.879-07:00My thoughts on a "CURE" for PTSDSomething I watched on TV left me wondering, "Is there a CURE for PTSD?"<br />
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David McHep CDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-29769137468066755902012-07-02T17:25:00.002-07:002012-07-02T17:25:40.398-07:00Lonely......I am so lonely.<div class="separator" style="clear: both; text-align: center;">
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I guess that I can rant here since no one reads this blog anyway. Not that ranting will help. We just finished celebrating Pride Week here in Toronto. When I moved here I kept hoping that I'd meet friends to do things with. My health interferes with me getting out to meet people. So I didn't really meet such friends by the first pride. I thought, "Well maybe next year will be better." With the exception of one year when Jessica and Hayley came in, I've spent the parades either alone, or in the case of last summer, in Casey House.<br />
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This year I was watching the parade alone once again. I did notice that there were couples, groups of friends and families watching. I was the only person that I saw alone. I'm never saying, "maybe next year will be better" because it never is. I have no idea if this liver will give out before next year causing me to start all over again. I don't know when or if I am ever going to get rid of this walker. I've been going to the gym 3 times a week for the past month, but it doesn't feel like there is any improvement. Plus my bladder problems have me using diapers if I am going to go out for a while.<br />
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I like going to events like Pride with a friend, or friends so you have someone to talk with. If you see something, you have someone to share it with. I can understand why people don't fancy hanging out at such things with me. I slow them down. There are almost no areas that are accessible, so that would also ruin things. As far as meeting someone, no one is checking out the skinny guy with walker. The diaper is the icing one the cake. I have no idea if I am ready for a relationship anyway. Partly it is because of issues with my last relationship, and the other part is I feel that I would just weigh anyone down. I have to admit that I was on the verge of tears last night, but dam my inability to.<br />
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The parade itself was so so. At first I went to the handicap area, but it was an odd layout. The view to the north was blocked by road closure signs and to the south parking signs blocked the view. By the way, all the people in the accessible area were with people. So I gave up on that spot and went down to the street to get a spot with a view. Well I had a great view until with group from Ottawa moved in beside me and spent the rest of the parade hanging over the barricade blocking the view north. I was kind of hoping someone in the crowd would be on Bath Salts and chew his arm off. If they were there, they were not in my neck of the woods. I took pictures while I was there. I haven't done anything with the pictures and I'm not sure if I will.<br />
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Oh well. My rant for now,<br />
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David McHep C<br />
David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com1tag:blogger.com,1999:blog-5491345334426730812.post-2438095773461001372012-06-04T21:44:00.001-07:002012-06-04T21:44:32.634-07:00Epilogue To Last PostingI just thought that I'd update the blog about my trip to the gym. Very frustrating, so even if no one reads it, at least it was a sounding board.<br />
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David McHep CDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-47368989674654096742012-06-03T20:46:00.000-07:002012-06-04T21:37:25.645-07:00Toronto the Accessible?I made a video ranting about accessibility in this city. I taped this on Sunday, but it takes a long time for me to post the videos to the blog. The video was too long for YouTube so I had to split it. I am hoping that it will let me post both parts in this posting.<br />
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Now part 2.<br />
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David McHep CDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-63588212191772070722012-05-13T10:30:00.002-07:002012-05-13T10:32:53.591-07:00Mothers' Day 2012 and The "Y"This year Mothers' Day falls the date after my Mom died. I didn't put music to it this year. I tried a microphone last time, but it was completely silent. I still get drowned out by street noise, so I'll have to see what I can do about that.<br />
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David McHepCDavid McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-23577013898931350542012-04-22T06:09:00.001-07:002012-04-22T06:10:57.418-07:00A Posting After A Long Break!I've tried posting this a few times. Well see if it works this time.<div><br /></div><div><iframe width="560" height="315" src="http://www.youtube.com/embed/xMX31_5RahE" frameborder="0" allowfullscreen=""></iframe></div><div><br /></div><div>David McHepC</div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-20548592417945040912011-10-17T06:28:00.000-07:002011-10-17T06:41:40.367-07:00My Casey House posting as promisedHere is the video that I took of Casey House while I was there. First there is no narration because I can't find my microphone right now. Secondly, this is hopefully part of my art project for World AIDS Day so I wanted subtitles since I didn't want one item making noise while the other's are quiet. David McCombs<div><br /></div><div><iframe width="853" height="480" src="http://www.youtube.com/embed/v8KWj2BaALo?hd=1" frameborder="0" allowfullscreen=""></iframe></div><div><br /></div><div></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-20980502831412596192011-10-03T06:07:00.000-07:002011-10-03T06:16:28.977-07:00Pride Day Parade video as promised<div>Finally I put together the videos from the Pride Day Parade 2011. This was the view from my wheelchair. The picture is jumpy because the road was in bad shape. Plus all I could see for the most part was a sea of behinds. David</div><div><br /></div><iframe width="853" height="480" src="http://www.youtube.com/embed/lcRQoXjQ4H0?hd=1" frameborder="0" allowfullscreen=""></iframe>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-79175275700050253472011-09-27T19:53:00.000-07:002011-09-27T20:19:55.051-07:00Where have I been for past few months?<p style="text-align: left;margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font: normal normal normal 12px/normal Helvetica; min-height: 14px; "><span style="letter-spacing: 0.0px"></span><span class="Apple-style-span" style="font-size: small;"><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIReJCg5C8CjOzNjwmTbLH6WtJ-iYqVRpgH2VgjkHdFKo2ol5AtM1KbTHExtFetM9xBifeUmBxpi5OyNBvKbJtdbDu5Ym2dkZWxIAootOrOITCQTvA-De_hfMoidRUfXKDzDupmv91GS8/s400/218045247_d76ba24eb4_z.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5657240266444675602" /></span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small; ">I know that I have been trying to do my postings via video to make it more exciti</span></span><span class="Apple-style-span" style="font-size: small; ">ng </span><span class="Apple-style-span" style="font-size: small; ">for me, but I have too much to say to do that this time. I took some video the past few months so I will get around to splicing them together and do some more video postings soon.</span><span class="Apple-style-span" style="font-size: small; "> I couldn't find any pictures so I'll use this one from online for now.</span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">The last posting was May 24, 2011 just before seeing my hepatologist. After I saw my him things became worse. They did</span></span><span class="Apple-style-span" style="font-size: small;">more test and I had liver failure. Despite having a system in place where I was phoned twice a day to check on me, my hepatologist was still uncomfortable that if I went south overnight, I’d be alone. So he </span><span class="Apple-style-span" style="font-size: small; ">wanted me to go into Casey House (the name of the HIV/AIDS hospice here). They also stopped all of my meds (including HIV meds right away). The hope being that one of my meds was causing it. I wasn’t allowed to take any aspirin, Tylenol, immodium, gravol, nothing. I ended up going into Casey House late May or early June since I had become unable to look after myself anymore. It was one time that I was glad that I didn’t have a dog anymore.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">Despite being off of my meds, my counts continued to reach new heights. A month after being off of meds they were still going up. There was concern that it was not meds after all and that I may need a transplant. At one point they believed that there was a 80% chance that I needed the transplant. That was a nightmare scenario for me. They have finally changed the rules about organ transplants here. Up until recently you could not get one if you are HIV+. Now that rule is gone, but you need to be stable on ARVs (HIV meds) to </span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">qualify. They just couldn’t figure out what drugs my liver could handle if I needed a transplant. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">I am really impressed with my new hepatologist. He seems to have connections and can get things done quickly. I saw him one week (I was seeing him once a week), and later that day I got a call to come in the next day for an Endoscopy in the morning and a MRI that afternoon. I was blown away. I have never had an Endoscopy or MRI booked in less than 24hrs in</span></span><span class="Apple-style-span" style="font-size: small;">Canada. The next morning the nurse was prepping me for the Endoscopy but was giving me directions that I knew were not right. I have had two Endoscopies before. So I told her that I believed that there was a mistake because I was there for an Endoscopy. Then she floored me with the news that I was there for a liver biopsy. My first liver biopsy was extremely painful. So bad that wouldn't allow them to do another one for 8 years. A few months ago I gave in and allowed my new hepatologist to do one and it was smooth as silk. So when Dr. Wong showed up I told him how happy I was to see him since the last one he did was painless. Then he warned me that my liver was so swollen that he could pretty well guarantee that this one would not be free of pain. Boy oh boy was he correct. I was in pain all day and still in pain on my way to the MRI. I couldn’t have any pain killers because of my liver. I’ve had several MRI’s but all have been only 20mins in the tube. With this one I was going to be in for 40 mins. I explained to them that I had a liver biopsy a few hours earlier and I was stil</span><span class="Apple-style-span" style="font-size: small; ">l in pain. I told them that I’d probably be OK as long as they don’t want me to put my arm over my head or a position like that. That was exactly what they wanted, so in the tube I went for 40mins. I was glad when the day of my surprise biopsy passed. I had liver pain for the next five days. Well, more than usual liver pain. Not knowing about the biopsy probably helped since I didn’t worry all night about what was coming.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">Just to give an idea of where my counts went. My Bilirubin that I mentioned in the video was 186 (a new high for me) reached 372 four weeks after being off of meds. My ALT went to 318 (another new high). AST went to 612 (again, a new high). ALP up to 172 (not too familiar with this one). Finally after about 5 weeks off meds my counts started coming down. So I went from a 80% chance of needing a transplant to a 20% chance. Oddly as soon as my ‘yellow counts’ as my hepatologist calls them started going down, the test that show how my liver is actually functioning started going up. My INR was 0.98 and my last one was 1.45. It has been a consistent climb. WBC has gone from 5.7 to 2.2. Platelets from 204 to 79 and Neut’s from 2.75 to 0.76. My hepatologist feels that this is just because there was so much damage done to my liver. I have lost a lot weight. 240lbs before liver failure down to 179lbs today. As for my HIV counts they have dropped below 200. So I am back to using Mepron to prevent PCP. I also have developed an odd non-itchy rash on both my legs. There has been talk about confirming if it is KS (all these old diseases that I haven’t heard about in ages). </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span></span><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 102px; height: 97px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge0_ipjDvTdWPWnDCBNpJjgVLuj_KvG1HhMkBv_3L9Rgbm7veQHKPaG74zpOanVLj12DUzWM44Zb46RQ0ZFjo7mzHrZcshdxFU1QRlVKppqV8byT4n9cWALrqmp7fkXit29WxD_tDfwPk/s400/05.gif" border="0" alt="" id="BLOGGER_PHOTO_ID_5657241151333500418" /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">My stay at C</span></span><span class="Apple-style-span" style="font-size: small;">asey House turned out longer than expected. As I mentioned, I went in either the last week of May or first week of June and I was released yesterday September 26, 2011. Casey House is a good facility. I took some pictures and video and will make a posting about the house. There was one death while I was there and a few friends of the house passed away too. I spent my 5th anniversary of sobriety there doing nothing. I have no idea when or if I’ll get around to picking up a medallion at an AA meeting or not. A person from an online chat for people with Hep C that I participate in sent me a virtual one so that was touching.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">Comin</span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">g </span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">home has been n</span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">ice a</span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">nd exhaustin</span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">g at the same time. Yesterday was the battle with the </span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">pharmacist. Two drugs that I was taking at Case</span></span><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">y are not covered and way too much for me to afford. So I warned the hepatologist that I am off of </span></span><span class="Apple-style-span" style="font-size: small;">them and they can figure it out. Also Casey House has been trying to get me moved to a one bedroom and I hit a wall there too. My main problems with the studio is the sofa bed. Along with all that weight I have lost most of my muscle. So pulling the sofa/bed in and out is very hard. My high INR has caused my blood to thin. They have taken me off of my blood thinners right now since I am already bleeding easily. So I keep getting nose bleeds when I put the bed up or down. One of the meds not covered is supposed to help with bleeding. Also the smallness of the apartment forces me to squat to get at some things. Once I am down I can’t get back up. So yesterday was spent going to the pharmacy to get the drugs that were covered. Then I needed to buy five more that were not covered but I could afford.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">I am still off of all HIV meds (they now believe that it was my Darunavir that caused it), and I see a HIV specialist October 5th to find out what meds we are going to try. One of the drugs they want to use involved a tropism test that needed to be sent to Vancouver, so it takes 6 weeks to get the results. They should be in by time I see him. If I do qualify for this drug, it is not covered but an application can be made to have it covered. So I’ll either be starting my new meds October 5th or starting paperwork to get one covered. I have to admit that I am nervous that my liver will go wonky once we re-start ARV’s. Thankfully Casey House was able to get me a walker and a pass for Wheel-Trans, so it will be a little easier to get around. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">That is all I can think of for now.</span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">Cheers,</span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span class="Apple-style-span" style="font-size: small;"><span style="letter-spacing: 0.0px"></span><br /></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><span class="Apple-style-span" style="font-size: small;">David McHep C</span></span></p>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com2tag:blogger.com,1999:blog-5491345334426730812.post-17340564531570435612011-05-24T19:00:00.000-07:002011-05-24T19:09:03.691-07:00Unexpected News Causes Concern Over My Liver<iframe width="640" height="390" src="http://www.youtube.com/embed/_d17oOImJB8" frameborder="0" allowfullscreen=""></iframe><div><br /></div><div>I wasn't sure what I was going to post next. I thought that I'd put a video together showing the area that I live. Then on Wednesday everything changed. The video explains it all. There is some difficulty with the sound so I think that I need to invest in a microphone. I hope that the built in microphone is not already dying even though the camcorder is only a week old. I had difficulty posting this video this time too. I made this six days ago but I just got it to post tonight. Just in time for my big appointment with my hepatologist tomorrow.</div><div><br /></div><div>Cheers,</div><div><br /></div><div>David McHep C</div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-44993748126105830392011-05-16T05:30:00.001-07:002011-05-16T21:45:12.133-07:00Blog posting after long break<iframe width="640" height="390" src="http://www.youtube.com/embed/HTVQ8manBqw" frameborder="0" allowfullscreen=""></iframe><div><br /></div><div><br /></div><div>This is the video posting I made to finally get my the blog moving again. I bought some film editing software hoping that making video postings would help motivate me to post more often. There are some technical problems. I may want to invest in a microphone, since it is difficult to hear me at times. I misspeak sometimes. At one time I use the word TEST when suggesting that adding a third drug to my cocktail would not work, where the word I wanted to use was STUDY. </div><div><br /></div><div>Cheers,</div><div><br /></div><div>David McHep C</div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-17262170275791852882011-05-09T13:08:00.000-07:002011-05-09T13:15:17.276-07:00Mothers' Day ThoughtsIt has been a long, long time since I've posted an update. A lot has happened and I just haven't felt up to typing the small novel that would be needed to cover it all. I still don't feel up to it so for now I am going to post a video that I made for Mothers' Day today. I'll work on updating the events around my Hep C and HIV treatment, hopefully in the near future.<div><br /></div><div>Cheers,</div><div><br /></div><div>David McHep C</div><div><br /></div><div>For some reason I can't post the video. The video is also on YouTube. This is the Youtube link. </div><div><br /></div><div><br /></div><div><a href="http://www.youtube.com/watch?v=XjUjBSxHDq0">http://www.youtube.com/watch?v=XjUjBSxHDq0</a></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-13031141636934017202010-12-02T00:17:00.000-08:002010-12-02T00:21:05.043-08:00What will a little piece of liver say?<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I’ve been meaning to make an updated posting but more stuff kept happening in my life. So I kept holding off planning on making the posting when I had more information. Just to update from my last post, I gave in and am paying the $30 extra a month to have my TV channels back. Just as I got the news about the lesions on my liver and losing the TV channels, I got news that a good friend of mine from Montreal passed away. She was the second close friend of mine to pass away in a very short period of time. I was beginning to feel like a boxer in a ring taking one punch after another. I really was finding it hard to take. It seemed like misfortune was taking over my life in a big way. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Medically I’ve gone through a few big changes again. I talked about my recent liver lesion diagnosis with my Long-term Survivors Group. I mentioned my concerns about my seemingly fast progression in liver damage. I feared that I seemed to be in a steep, consistent incline (Or decline depending on how you look at it). One of the members of my group talked with his primary HIV Physician, who is one of the best in the country about me. He laid out my story and asked her that if she were in my shoes, what would she do? She said that if it were her she would get a referral to see a Dr. Wong, who is one of the best Hepatologist in the country. I had seen his name before on so many studies I had read. I also know that my previous Hepatologist would talk to him as a sounding board for ideas for me. I really liked my previous Hepatologist as a person and I feel that is important, so I was not sure what to do. Then I thought that I may as well cut out the middle man and go to the top dog so to speak. So I explained this to my new doctor and ask him to make a referral to Dr. Wong. He warned me that I’d probably wait 8 months, but I told him to do it anyway. Imagine my surprise when I got a phone call back informing me that I had an appointment with him in a few weeks. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">My first appointment with Dr. Wong was encouraging. My blood work related to my liver functions are alway high, but there is one that is always extremely high. I had never even hear about it until about three years ago and quite by accident. I was seeing a specialist about something else and said, “Wow, your GGT is really high, what have they told you is causing this?” I had to confess to him that I had never heard of GGT before so he showed me it on the chart. The maximum normal level was 40 and I was over 900. He told me to ask my doctor about it because it should not be that high. I asked my doctor and got sort of the same reaction. “Wow, that is really high, make sure you bring it up next time you see your Hepatologist.” The Hepatologist was stunned by it too. “Has it always been this high?” I was asked. I told him that I had not even heard about it until recently. So he said that we would keep an eye on it. Every time the count was way up there. Always between the 900 and 700 mark. The last conversation I had with my old Hepatologist gave no new answers. He knew that the count was extremely high, but couldn’t figure out why that would be. He even doubted that GGT was a count that mattered much. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Imagine my surprise when Dr. Wong zeroed in on my high GGT right away. “Your GGT is so high, why have they told you it is so high?” So I explained to him my history with GGT. Dr. Wong’s opinion is that there is defiantly something going on with my liver. “There is no way that your GGT would be that high without an underlining reason,” he told me. So he wanted to do test to try and figure out what is causing these high GGT readings. One thing we did notice was that my short stint on treatment seemed to affect them. Before treatment I was over 900 in range and after treatment I had a reading around 399. Dr. Wong is also skeptical that my liver damage is as high as the test are indicating. He can not understand how someone’s liver could get so damaged so fast. Since I had such a bad experience with my first liver biopsy I have not allowed another one. So I have only allowed Fibrotest to be done. It uses some markers in the blood to come up with a number. What it is a marker of I’m not sure. All I know is that the numbers of the Fibrotest give an estimate of how much liver damage there is. According to the Fibrotest number, I have grade 4 inflammation. According to Dr. Wong fatty liver, which I have, can trick the Fibrotest into giving a false high reading. He believes that is what is happening with me. So he booked me for a Fibroscan a few weeks later. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">When I went for the Fibroscan I explained to the nurse that Dr. Wong believes that my fatty liver was tricking the Fibrotest and she told me that fatty liver can trick the Fibroscan too. The Fibroscan consist of a machine thumping against your side and sending a shockwave through the liver. The harder the liver the slower the signal takes to pass through. Fatty liver can slow the waves too I was told. I was surprised that they showed me the results of my Fibroscan right away. I am used to having to wait until they send the results to the doctor and then getting the results from him. According to the Fibroscan I am worse off than the Fibrotest. The Fibrotest says grade 4 inflammation and the Fibroscan says cirrhosis. I wasn’t sure if I now had to wait until my next appointment with Dr. Wong before we set up more test, or if he would try to do test before hand so we would then have more answers. So I called two weeks ago and asked. They called back with a booking for a liver biopsy the following week. I had already come to the decision that a liver biopsy would be in my future and I’d just need to do it. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">So I had the biopsy done a few days ago. This one went much more smoothly than my first one. I had a little pain and pretty bad nausea the day of and the following day. Other than that I had some pretty bad fatigue the next two days. I gave in and went to the emergency last night just to make sure I was not experiencing some complication. “After having such a smooth procedure, watch me have a complication now,” I thought to myself. Everything seems to fine. Now I guess I’ll get my results when I see Dr. Wong in the new year unless there is something that causes them to call me sooner. I am quite anxious to find out what they see when they put that little piece of liver under the microscope. Will I be told that my liver damage is actually lower than thought, or will I be told that the Fibrotest and Fibroscan are not lying to me? See, just like I told you. Anxious! So I guess that I’ll post again when I have more to report. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers until then,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C</span></p></span></div></span></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-38256982591040660242010-09-12T16:23:00.000-07:002010-09-12T16:28:33.314-07:00Failure Land<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I wasn’t sure what I was going to do about my blog after failing treatment. For a long time after stopping I was in a daze. I referred to it as “walking though failure land.” I had no idea what my future would be. What was to become of me now? This fog lasted for much longer than I would have hoped. I still can not say that I have broke free from it. One day it will not be too bad and then the next I’d be back drifting through Failure Land. I was unsure what to say. Why just write to say that I was lost? Then I decided that since this was part of my experience living with Hep C that I would write about it. I began to write a posting, filed it away, and then forgot about it. Since then things have changed. The most recent changes happened just a few days ago. So I realized that if I was going to post an update, the old one was now out-of-date. I am even unsure about this posting. If it ends up getting posted then you’ll know what I decided. I will include the ideas from my old copy, but will have to abbreviate it.</span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">So what happened immediately after stopping treatment other than my zombie like state? During the appointment when I was told that treatment was being stopped, I was also told that there was a study being done that my hepatologist thought I would be good candidate for. I waited to hear back about the study but had no idea how long to wait since I had no information about it. When would it start? Am I looking at weeks, a month, three months, or closer to a year? After a few weeks I called the clinic and they were unsure. Then a few weeks later I called again and they said that there was no study. I was confused over what happened. How could there be a study one week and then a few weeks later there be none? I didn’t get any answers. I wondered if it was because I was co-infected but I could not get any information if that was so. It actually was confirmed to me just two weeks ago quite by accident. I saw my HIV physician for the first time since stopping my Hep C treatment. He told me that he had heard that a new drug would be approved for use in Canada in 2011, so at that time I could take another shot at treatment. Then he casually mentioned that they have not allowed any trials on co-infected people yet. So I had my answer. They must seen that I had HIV and therefore I was unfit as a participant. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Another thing that has happened since ending treatment is that I have a new family doctor. The one I had before I got just because he was seeing new patients. I never got along with him though. My old doctor from Montreal moved to Toronto, so as soon as I could I switched to him. I saw him for the 8 years I was in living in Montreal and I was fond of him. He was also the doctor who diagnosed my Hep C plus he was there to see me at my worse in my addiction and saw me get sober. So I was very glad to finally get a family doctor who I like. The difference between him and my old doctor is like night and day. For the two years that I saw my old doctor not once did he do blood work on me. I asked him several times if he wanted copies of my CD4, CD8, HIV Viral Load counts and so on. He always refused saying that he didn’t need to know them. That was information that only my HIV physician needed to know. When I raised the idea that should he not know the state of immune system to look out opportunistic infections, he would brush it off. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I have been with my new (also old) doctor for a little over a month and already he has done a full array of blood work, wants my HIV physician to keep him up on my immune system and has had an ultrasound and CT scan done of my abdomen. The first thing he discovered was that I’m still anemic, I am low in B-12 and my testosterone is low too. So I am getting B-12 shots and testosterone shots. My hope is that this will help with my low energy. At least there is a plan now to address it where before it was brushed off by my old doctor. </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><br /></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">As happy as I am about having a doctor doing a full array of blood work it has caused some stress. It started a week after I had my first appointment and had the blood taken. I got a call from his office that sounded kind of frantic. They wanted me to get an ultrasound of my abdomen the next day. It turned out that the lab was booked so it done the day after that. It is always concerning when you get a call from your doctor that feels like “We need this test done and we need it yesterday.” So I had my ultrasound done but I had to wait a week before I saw my doctor again to find out what the fuss was all about. It turned out that a marker for liver cancer was high. Not as high as a person who actually had lesions, I was told, but high enough that we should do a CT scan just to rule that out. So I got my CT scan really fast. Especially compared to other experiences that I’ve had with our healthcare system. I saw my doctor on Wednesday to get my first my first testosterone shot, so I hoped that he had the results. Otherwise I’d have to wait until my following appointment to find out what they found out. </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"><br /></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px"></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I was feeling good going to the appointment. I expected that I’d go, get my shot and if he had the results I’d get a clear slate and off I’d go. I really expected that since it was a “just to rule things out” test that they would find nothing. I got my shot and then I asked if he had gotten my results. He had but hadn’t really had a chance to read it. So he pulled it up and looked it over then. I was quite taken back that it reported finding several lesions. My liver gets looked at a lot and I always have a cyst on my kidney and of recent years have fatty liver, but I have never had lesions. Their thoughts were that they were benign tumors or hematomas. My doctor is a little concerned. He had a patient much like me when he was in Montreal. He consistently showed up clear, but went from hematomas to “something really bad” as my doctor put it in a few weeks. So he is keeping a close eye on me. He did more blood work and he said that if the markers are still high, or have even higher he’ll order a MRI to get a better look at them. I wonder if his concern is from a lesson leaned hard, or what the story was with this person who went from hematomas to something really bad. Had the hematomas showed up and then like several doctors would have done they ordered test in three to six months and things were really bad by then? Is his concern from a once burned scenario? The mind wanders. What ever happened to this patient, I am glad that I have a doctor who is staying on top of it. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">So after getting this news of course the mind wanders, pondering my medical history. I explained my concerns to my doctor. I find that my liver damage has speeded up the last few years. When I was first diagnosed I had grade 1 liver inflammation. Then just before I started treatment I had grade 4 inflammation. In the past few years I have had fatty liver that I didn’t have before. So I see the increase in damage to my liver going up like a chart. I can very easily see these hematomas graduating to fibrosis and then cirrhosis. Since the news is so fresh (getting it four days ago), my mind is still absorbing it. To help me with this process, I lost a good chunk of my TV channels on Thursday. My cable company discovered that I was getting channels that I was not entitled to and they cut them off. I had no idea that I was not supposed to have them, I even called them to find out why I didn’t have them anymore. So within a 24 hr period I got this medical news and lost my favorite channels. So now my mind is juggling between, my medical future, and can I afford an extra $30 a month to get my channels back? I will make another posting after I get a more clearer picture of what is going on. </span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers until then,</span></p><div><span style="letter-spacing: 0.0px"><br /></span></div><div><span style="letter-spacing: 0.0px"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C </span></p></span></div></span></div></span></div></span><p></p><p></p></div></span></div></span></div><p></p>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-68916374477209997122010-05-06T22:25:00.000-07:002010-05-06T22:27:56.623-07:00Not much to say and a lot to say at the same time<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">It has been a very busy week. I’ve received big news, but just haven’t been able to think of any words. I’ll go through the week chronologically to help me think. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">On Wednesday I got two frantic calls from two different doctors. Both sounded desperate, asking to see me in one or two days. That always is reassuring. The next day I had an appointment with the Hepatologist. My feelings concerning my Viral Load (VL) were correct. My week 12 VL was only down to 23 million. No where near the two fold drop needed in order to get the government to continue paying for the treatment. So I was pulled off of treatment. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I have felt kind of numb ever since, and not so much in the mood the talk. Those who know me, know I talk a bit much, so perhaps friends are enjoying this quietness. Part of me feels bad that I went through all those rough side effects with no benefit. Also I am angry at the system here. They made me wait so long before they would treat, that now I am in a scary situation with no other options. Had they treated me when I first wanted to my VL was at 4 million. Perhaps I would have responded better. Knowing that I had a VL of 4 million then and one of 40 million at the start, makes me wonder what may have been. Plus I had grade 1 liver inflammation when I first wanted to treat, and they made me wait until my inflammation was Grade 4. So my mind is full of what may have been scenarios. </span></p><div><span class="Apple-style-span" style="font-family:Helvetica, serif;font-size:100%;"><span class="Apple-style-span" style="font-size: 12px;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:Helvetica, serif;font-size:100%;"><span class="Apple-style-span" style="font-size: 12px;"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">The Hepatologist started out by telling me that there are treatments 5 to 10 years down the line. I told him that I have been hearing that for the past ten years and the drugs are always 5 to 10 years away so I did not hold much faith in such things. Then he said that there was a study that he is sure I would qualify for. The study involves taking the same two drugs as before but adding a third. He says that there are quite a few, like me, who did not respond to treatment, but then responded well to this. So he said that he would give them my name. I didn’t feel any urgency so it feels like it is a situation of months if not years before it would begin. I really wish that they could have just kept me on the treatment and added that third drug now. My body has partially adapted to the side effects so it would mean less stress on me. Now I will be off the meds so my body will adapt to not having the drugs in my system. When the study finally comes available, I’ll need to go through the stress of re-adjusting to the meds again. So I’m not happy over any part of this situation. </span></p><div><br /></div><div><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">The other rushed appointment ended up being a false positive. So it was good news, but a flutter of fear initially. I always show up as a false positive for Syphilis. This has gone on for years. This time though I showed that I was positive for three antibodies which was a huge change, and something very dangerous. I usually test positive for just one antibody. That is how they know it is a false positive. After looking closer at the results, a typo was noticed. I had the singular antibody that I always have, but it was entered incorrect. Whew! Dodged one there. </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">The past week was full of stress. I still feel numb and totally uncertain about the future. I worry that liver problems will interfere with my HIV treatment. Again, something that would not have happened if I had treated earlier. There doesn't seem to be any clear answers. What will I be blogging about now that I am no longer treating the HCV. I guess that I can still blog about my battle with the pesky virus. Perhaps it will be more psychological than physical unless my blood work does something really wonky. If so then things will become interesting. That is all I have to report for now. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers for now,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C </span></p><p></p></div></span></span></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-1174350220830970532010-04-27T23:12:00.000-07:002010-04-27T23:52:11.608-07:00Week 14 and not much to report<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I did injection number 14 last night. I really have nothing much to report. I still have not received the results from week 12, so I don’t know my VL yet. I am starting to get anxious but no phone call yet. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I have asked the building for more help since I seem to be getting walloped by Brain Fog. After screwing up my meds and double dosing last week I have them helping me fill my tray to make sure that I don’t do that again. They also will call me Monday nights to make sure that I have done my injection. At the pace I am going I anticipated that a missed injection would be next. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">My side effects to seem to be less generally though. I get burst of energy but I am still having difficulty gauging my strength. I’ll feel the energy come so I’ll go outside and then pay for it later. Not sure how long this will be an issue, these short burst of energy. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I am experiencing a somewhat bizarre situation while trying to get in to see my old doctor from Montreal. I called the office one day and explained that I was a patient of Dr. McLeod’s in Montreal and I wanted to make an appointment to possibly become a patient of his since he was now in Toronto. The receptionist told me that she’d take a message and they would call me back. They didn’t cal back that day or the next. I called back and left a message just confirming that they had my phone number correct and again, no call back Friday or Monday. I am assuming because he is new to the city that he must be looking for patients. So I am unsure what to make of it. I don’t know if he saw my name and thought, “Oh no, not him,” or if they are just that busy. I guess that I can call back tomorrow or Thursday. I may call my nurse too to see about my VL. She either doesn’t have the results yet or has just been too busy to call. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Other than that I am feeling a little glum today. I saw my first Mothers’ Day commercial and Mothers’ Day always reminds me of my Mothers’ death. It was the last time that I kind of spoke to my Mother. I say kind of because she was not home. I left a message that I know she heard though. So that was the last that my Mom hear from me. It was a rough time in my life. I had just entered rehab. They had a policy that you could not make any phone calls for the first 5 days. Based on that I told my family that I could call them on Tuesday. Sunday came and the nurse on duty bended the rules and allowed us to call home. I’m glad that she did. On Tuesday I discovered that because I had arrived late on the day I arrived, that my first phone call would fall on Wednesday. Tuesday I was called out of group. I was embarrassed thinking that my screw up had caused my family to call a day early. I apologized and told them that I would ask them to call back the following day. It was my sister’s voice on the phone telling me that my Mom had died. One day before I would have been able to talk to her in person. I am glad that she got my Mothers’ Day message though. This is why Mothers’ Day always get hits me a little hard. </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px">I am gaining more and more experience with my new i-Mac. I was finally able to make a call using Skype. Next is figure out how to burn a DVD.</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">That is it for now. I will report my 12 VL result as soon as I get it. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C </span></p><div><span class="Apple-style-span" style="font-family:Helvetica, serif;font-size:100%;"><span class="Apple-style-span" style="font-size:12px;"><br /></span></span></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-42684609704823392562010-04-19T19:55:00.000-07:002010-04-27T23:20:16.703-07:00Week 13 and I’m confused.<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I am sure that my last injection was number 12, but I just noticed that my next blood work is to be done next week. I have already done it. It totally confused me so I counted and I was right. I still am not sure why they have timed it the way the did, other than it gives a full week for the drugs to take hold. So I am assuming that is why they have you do the blood work when they do. The confusion was incredible. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">My nurse came by today. The only real complaint I had with her was that I had a few nights of wicked nausea again. She says that my thyroid was up again, so perhaps it was related to that. She is not sure what this means as far as treatment goes. She is hoping to have my VL results soon, so that works out sooner than I was told. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">So I guess my next posting will be then. Other that that I am still trying to get used to the new iMac. It has not been easy and frankly a little frustrating. Well, more than a little. I really need a tutor to sit with me and help out. Not sure how I’m going to work that one. Apple gives help over the phone, but it is hard. I had to do it that way today to get the email working right. Very long and tedious. AAAARRRRRRHHH! </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers for now,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C. </span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica">PS. </p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><br /></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica">I am even more confused. Just discovered that I've been taking double of one of my HIV meds. They changed the size of the pills, so where as I used to take two pills twice a day, I now take one. I had no idea. I am not sure if they told me and I forgot (brain fog), or if I was never told. Some say that it doesn't matter, but it does bug me if I was told and then totally forgot. Now I have added concern that my HIV virus will mutate because of the change in dose of drug. This on top of the stress of waiting for my HVC VL results. I just was at my doctors and had a full screen of blood work done. I'm glad about that because they were not doing HIV blood work while I was on the treatment. So I was wondering how they would have any idea if I mutated. I guess that I'll ask to have more done in a few months. Oh well, later everyone. </p>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-21295508608013841152010-04-14T17:57:00.000-07:002010-04-27T23:19:44.577-07:00Week 12<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica">I did my week 12 blood work today. I have to admit that I am not expecting a good outcome. I did the injection on Monday night, but wanted to wait until I did my blood work before posting. Waiting for the results will be the most frustrating thing. Mostly because there is a chance that I’ll be cut off of treatment, but because of the 3 to 4 week wait I’ll end up taking it for that time and then be told that I should have not bothered. </p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I find that I’ve been a bit short tempered lately. I closed down my Farmville farm A few days ago. Part was a feeling of frustration with personalities. I felt as if there were some people who I was helping out but I felt as if I wasn’t getting the same help in return. “Feelings aren’t facts.” is a saying from Narcotics Anonymous that I need to remember. The main reason I shut down the farm though was the constant computer crashing connected to Farmville. It really affects the computer in a bad way. Here I just bought a new computer, based partly because the old one was crashing while I was on Farmville, and now the new one crashes while I was on Farmville. So after trying to harvest some crops, while my sister showed up in IM, the computer crashed four times in about 5 minutes. So that was my breaking point. I’ll miss the social aspect if it, but I need my sanity. It will mean that I will have more time alone, and I admit that part of the reaction was based on personalities, but I am not about to try Farmville again. Even if I heard that Facebook had fixed their problems, I’d be skeptical. That is my posting for now.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Cheers,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C </span></p>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com0tag:blogger.com,1999:blog-5491345334426730812.post-78404748246956352442010-04-07T18:28:00.001-07:002010-04-27T23:21:05.682-07:00Week, 11 comes with computer problems<p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica">For some strange reason, when I just switched to a new computer, I suddenly was unable to add any more postings to my blog. So I set up a new blog and I set up a link to my old blog so I don’t have to re-post it all. I don't even know why I am fighting so hard to make this posting since It is boring as hell for anyone who reads it. </p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">I finally made it last week to my long-term survivors group which was nice. That was the first visit I made since starting treatment. There also is another long-term survivor group that meets in my building on Thursdays. I really enjoyed finally getting hooked up with them. It gives me one more outlet to socialize. </span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Monday night was injection number 11. Other than that I am sore, stiff and achy today with some sweating. I know that is one of the possible side effects, but I haven’t experienced it yet. I don’t know why it would just show up at week 11. Perhaps I just picked up a bug of some sort, Part of me likes to think that it is the virus getting it’s ass kicked before my week 12 blood work next week. I can dream, can't I?</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">Until I have more to report. Cheers,</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica; min-height: 14.0px"><span style="letter-spacing: 0.0px"></span><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px Helvetica"><span style="letter-spacing: 0.0px">David McHep C</span></p><div><span class="Apple-style-span" style="font-family:Helvetica, serif;font-size:100%;"><span class="Apple-style-span" style="font-size:12px;"><br /></span></span></div>David McHep chttp://www.blogger.com/profile/16151377657791921567noreply@blogger.com1