My big fat non-event

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

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

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

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

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

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

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

Cheers,

David Mc Hep C

If I weren’t a little paranoid where would I be now?

I will take my first injection Monday unless some unseen force interrupts it. It has been an amazing week with concern on my part being the only thing preventing mishaps or delays.

Actually it began even longer than a week ago as I look at previous blogs. First the Section 8 was sent out on November 19th and a start date of December 9th was set. As we got close to December 9th I began to worry because the drugs had not arrive yet so I called out of concern. Then I found out that my Section 8 was not approved yet. Had I not worried the nurse would have shown up on the 9th and I’d have nada.

When I got home from the holidays I got word that my Section 8 was approved and that information was passed onto the nurse. She called me and we booked a new start date of January 25th. The only thing that should have interfered was if my doctor and I decided to try pre-dosing. The nurse told me that the information had been passed onto the pharmacy so to wait for their call. I was even told not to put them off and do my best to be available for the delivery. So I waited for the call.

By Wednesday I was getting worried. I only had three weekdays left before my new start date. To make things worse I had doctor’s appointments Wednesday and Thursday. When I called the pharmacy they were taken by surprise. It turned out that the information had never been sent. So a few frantic calls and the information was sent to them. The pharmacy was a little worried that there may not be enough time to do the paperwork. Because I was on ODSP they had some hope though. Had I been on other insurance programs like Ontario’s Trillium Drug Program or a private plan it would have been impossible and the start date would need to be changed again.

I did see my Hepatologist today but he was not willing to try pre-dosing. My understanding is that the government approves the way I’ll be treated. This is the approved treatment plan where as the pre-dosing is not officially approved. It is still somewhat experimental. So if I wanted to try another way of treatment it is not covered. I’ll take what is covered. When I got home I called the pharmacy and they were able to get the paperwork done so my medications will be delivered tomorrow. Then the nurse will come on Monday to do my first injection.

It frustrates me though that had I again not felt nervous, and had I waited too long for a call the nurse would be setting up yet another start date. It really has been daunting. I am about to start this treatment and there have already been a number of problems with communication. It makes me worry that if I am hit hard by side effects I may not have the energy to make calls and run around if there are further communication problems. The medical teams do not seem to keep in touch with each other. Information is passed onto someone but there is no follow-up to make sure the information was acted on. It really reinforces to me how you need to have an advocate or you will fall through the cracks of the medical system. Hopefully these hiccups were starting pains and things will be smoother now. I’ll update when I do my first injection on Monday.

Cheers,

David McHep C

P.S.
I am also a little concerned that no one will be doing blood work for my HIV. I've been told that it is not necessary but personally I'd feel a lot better if my CD4s, CD8s, Ratios and HIV Viral Loads continued to be measured. The Hepatologist says that my CD4s will drop but not to worry because my percentage will remain the same. I asked him if shouldn't I continue to be tested so if my CD4s dropped below 200 I could start preventative treatment for various infections. He claims that this has no impact. That people on treatment will have their CD4s drop below 200 but they don't get PCP infections. Call me a nervous Nellie, but I would still like to keep an eye on things and have the option to choose prophylactics if I want. I'll call my Primary HIV Physician or Family Doctor and see if they will continue to order the test for me.

Perhaps I shouldn’t have taken the risk after all

I was a little worried that by mentioning a new official start date I may jinx it because of past experience. Well guess what? I have a new start date and even it is a little tentative. This time I am the one to blame though.

I called the hepatologist today to see if pre-dosing with Ribavirin was an option. The nurses had not heard of it so they asked if I wanted to hold off on my start date until I saw the doctor. I asked when I could get in to see him and it fell after my previous official start date of January 19^th. Not by much though. So this is the schedule for now. I will go in and see the doctor about pre-dosing January 21^st. Then I have a new date for the nurse to come on January 25^th. If the doctor does not want to do pre-dosing then January 25^th will be my new start date. If he is for it though the January 25^th appointment will be changed again. Poor nurse.

I have a suspicion that the doctor will not want to do pre-dosing. I am a little worried that it will create a new mess where a new Section 8 would need to be approved to give an OK to pre-dosing. I have a list of selling points to use from a member of the Nomads online forum that I participate in. It is just after hearing about pre-dosing and its potential I felt that if I am going to do this I want to give it my best shot. If I went ahead and didn’t even try to see about pre-dosing then I’d always worry that I didn’t give it my best shot. This way, even if it is refused, at least I tried my best.

So for now I’ll refer to January 25^th as my tentative official start date, to become my start date if I start on that date. That’s not confusing at all. I’m sure that I’ll have another update after January 21^st.

Cheers until then,

David Mc Hep

Dare I take the risk?

I have mentioned before that when, or if, I got a new start date for my treatment I may not mention it. I had a fear that by announcing it I may jinx it and it would be changed on me once again. People may begin to think that I am yanking their chain. Then tonight I got a surprise phone call. More so because it is a Sunday night than I was not expecting this call. It was the nurse calling to set up a date. There is a little history to this call.

I had hoped that I would get the call telling me that my Section 8 had been approved before I left for my families place for the holidays. It never came though. The holidays came and went. By the way I enjoyed the time with my family. The holidays have changed for me since getting sober. In the old days I would always spend Christmas with the family and then come back home to spend New Year’s Eve partying in the big city. Now I spend a week or more with my family. It is a quiet time but a good time. I know so many people for whom the holidays are a horrible time. Some because they are lonely, and others because they hate spending time with their families and feel obligated to do so. My family seems to be able to spend time together and not get at each other’s throats.

Sadly a friend of mine’s mother died just before Christmas. I emphasize, DIED and not passed away since I know from some of his blogs that this was important to her. He has written some stories about his mother in his blog and I have been reading them. They make my eyes tear up and it takes me back to thoughts of my late mother. She died right after Mother’s Day on May 14, 2002. One thing he talks about in his blog is how his family enjoys each other’s company when they get together. He attributes this to his mother always making sure that they did things together as a family. It has had me thinking about how my mother always had the family play card or board games together. We made trips to Prince Edward Island as a family. How my parents managed that one I’ll never understand. Well enough about my holidays. They were good, but because of my friend’s mother’s death, mine was on my mind a little more this year.

I hoped that when I got home, that ever-elusive message that my Section 8 was approved, would be waiting for me. It was not. There were 21 messages though thanks to a miscommunication with my building. My building provides some services for the tenants. One thing that they do for me is call me to remind me to take my medications. When I left I told them to suspend the calls because I was going out of town. Since I was not sure when I was coming back I told them that I’d call them when I returned. So it was a little surprising to have 21 medication reminders waiting for me. Not one message was about my Section 8. I was a bit worried though that they may have tried calling but the mailbox was full. I have no idea how much it will hold. So I called the clinic the next day. They didn’t know the status but told me that they’d call back later that day. They didn’t so I just assumed that they’d call the next day. By the afternoon of the next day I was a little nervous that they forgot about me so I called back. This time they called back soon and told me that my Section 8 was approved and they had contacted the nurse. So I was expecting her call but since it is Sunday I expected her to call me tomorrow at the earliest.

So I now have a new start date. It is January 19, 2010. My Section 8 is approved so the only thing that should change it now is, a natural disaster (we’ve yet to have a big snow storm yet), or if they change it for some other reason. There is one other possible thing that may change it. Me! In the forum, the Nomads, that I participate in there are quite a few members who are doing a new style of treatment called pre-dosing. It involves starting the Ribavirin two weeks before starting the Pegasys. The idea behind this is have the blood saturated with Ribavirin before starting the Pegasys. So I plan on calling my hepatologist tomorrow to see if he has heard of this and if he would consider trying it. If he is I may try this route. My feeling is that if this may increase my chance of success then it would be worth it. I already have a poor chance of success so if this will prevent me from having to try another run at treatment in the future then it will be worth it. So if anything changes I’ll have to make another update before my planned injection January 19th.

Cheers for now,

David Mc Hep C