My thyriod and I are friends again

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

Cheers,

David McHep C

Weeks 9 and 10 are a mix of news and emotions.

It looks like I am doing another 2 week posting. Well, it has been a busy time. Last week the clinic wanted me to come in person to see if we could get my nausea under control. One thing that concerned them was that my nausea could be a symptom of thyroid problems. Supposedly the interferon can make toast of your thyroid. One of my blood test showed some difficulty going on with my thyroid. So they did more blood work on Thursday and I had and ultrasound done Friday. Now I have to wait for the results.

My doctor says that it is rare, but they have had some patients develop thyroid problems. When that happened they needed to stop treatment right away. “I’m not going to continue treatment and leave you without a thyroid,” was his words. Supposedly most people’s thyroids repaired themselves when they stopped the treatment. So I have been holding out on making the next posting, hoping that I’d get some news.

Well, it is Monday night and time for shot #10. I forced myself to go to half of my long-term survivor’s group tonight just so I could get out on the apartment for a while. I am sick and tired of being stuck inside for the last 10 weeks. It was nice to get out, but exhausting too. It was nice to see my group though.

I walked into a drug the deal on the way to the bank before the meeting. I walk slowly, so that is part of the problem. I could see the group waiting ahead and I knew that they were picking up. As I walked towards them two rather large guys came up behind me and then passed me. I was sure that the crowd was waiting for them. Just as I reached the crowed the guys reached them. There was a big truck parked and I couldn’t walk out on the road. So I had to push myself through the deals. My heartbeat took off for a while. I have not experienced what I understand as Riba Rage from the treatment, but it came close today. Part of me wanted to give them a piece of my mind. Not very wise though.

So tonight I did shot number 10 and I guess I’ll update more after I get my thyroid results.

Cheers,

David McHep C

Look who is a quarter of a century old today, an anniversary comes with some disappointing news

25 years ago David was surprised with the news that his body now had a new member. Although he was surprised the news was not totally unexpected. The new member came complete with a name and that was HIV. He was born in a time much different than today. Before 1985 he would have remained hidden. A new test that came out on the market in 1985 made it possible to discover this new addition. I’m aware that the viruses swimming around my body today are not the same virus from 25 years ago. He died ages ago, but his descendants have been fruitful and multiplied a lot.

It was not easy to get tested for him at that time. There were no drugs available that would eradicate, or tame him. Although David asked, no doctor would order the test. “Why give you a diagnosis if I can’t do anything about it?” was the mantra. At that time the doctors would test for HIV only if you were showing symptoms to confirm a diagnosis. David wanted to know regardless. He did have an ace up his sleeve though. He was friends with a nurse who worked at the Hassle Free Clinic. That clinic was the only place in Toronto that had anonymous testing. They too would only test if you were showing signs of a weakened immune system though. Knowing how much David wanted to know, his friend told him to come into the clinic and he would perform the test. “I know that you aren’t going to jump off a bridge if I tell you you’re positive,” was his response. Positive was the result.

Early on things looked grim. The advice given at the time was to prepare for the end. A time of 18 months to three years maximum was given. So David did as requested and prepared for the end. Some of his friends were also diagnosed and true to form they were gone within three years. Each death brought thoughts of a new future scenario. As each friend developed a horrible infection, then the possibility of getting that infection became a worry. When each of his nephews and niece were born, David was overwhelmed to see them but then also felt sad that they would not know him. He expected that they would be too young when died to remember him. As the years passed, more friends died and his nephews and niece grew up.

So after waiting and waiting, 25 years later David remains. Technically he doesn’t know the actual date of the infection or test, just that it was spring 1985. So March 15th seemed like as good of a date as any to mark the event.

As for my other virus, tonight will be shot number 8. My nurse called today after finally getting my Hepatise C (HCV) Viral Load (VL) results for week 4. To say it was disappointing would be an understatement. It has hardly budged. As I mentioned before, at 4 weeks an undetectable result would be the ultimate. If not undetectable then the next best would a 2-log drop, so for me that would be 400,000. I have barley budged though. I went from 40 million to 32 million. That now means that if I am not down to at least 400,000 by week 12 they will stop my treatment considering it a failure.

I have read that people who are co-infected with HIV and HCV are slow responders and should consider 72 weeks of treatment. That would be lovely (not that I want to feel sick like this for so long), but since my drugs are covered by the province of Ontario this is not an option. I’ve been told that if I was on private insurance that I may be able to get 72 weeks covered, but that the province just won’t do it. Those who say that Canada doesn’t have a two tier health care system obviously do not deal with it. I’ve known this since the early days when I was diagnosed. Back then many new drugs were available in the US and those who had private insurance could get them covered through creative paperwork. Since I was on government insurance I always had wait until it was approved or take part in a trial. Often when the trials ended the drug was no longer provided to you. So again, those on a private plan did not have a problem, but those like me would have a period when the drug was no longer covered. So I am well aware that our health care system is not level for everyone. Knowing that doesn’t make it any easier at times like this when it really hits me.

Besides this news, I am still dealing with nausea. The nurse was going to contact the doctor today to see what he was willing to do about it. I finished the antibiotics and I am taking my Gravol at regular times, 4 times a day, and the nausea still is a pretty bad issue. I haven’t actually vomited for a while, but I feel on the cusp most of the time. Activity makes it worse so I feel pretty anchored to home.

I am posting this before I do my injection tonight. They have become routine by now. That is it for now. I will report any changes or news as it comes.

Cheers,

David McHep C

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

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

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

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

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

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

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

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

Cheers,

David Mc Hep C

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

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

Cheers,

David McHep C

Shot Number # 4, A video of a manic Monday

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

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


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

Cheers,

David McHep C

My big fat non-event

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

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

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

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

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

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

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

Cheers,

David Mc Hep C

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