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.