Where have I been for past few months?

I know that I have been trying to do my postings via video to make it more exciting 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. I couldn't find any pictures so I'll use this one from online for now.

The last posting was May 24, 2011 just before seeing my hepatologist. After I saw my him things became worse. They didmore 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 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.

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

qualify. They just couldn’t figure out what drugs my liver could handle if I needed a transplant.

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 inCanada. 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 still 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.

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).

My stay at Casey 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.

Coming home has been nice and exhausting at the same time. Yesterday was the battle with the pharmacist. Two drugs that I was taking at Casey are not covered and way too much for me to afford. So I warned the hepatologist that I am off of 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.

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.

That is all I can think of for now.

Cheers,

David McHep C