This will be a quick post. My 33rd infusion went well… No hitches, nothing really out of the ordinary. That’s pretty much it. Why is this short? Well… It’s been a month since my 33rd infusion. I had to skip a session because my aides got sick and I didn’t have anyone to go with me to the hospital. I also didn’t want to risk their health by forcing them to go.
The downside is, my 34th infusion will be the last one with Dr. Lani. It’s sad, I spent a year and a half with her. Almost every other Tuesday, we’d spend most of it together during the infusion. In that period I got to know her well.
I’ll save my thoughts on this matter for another post. I’m going for my 34th infusion in a few hours. Wish me luck.
I got my 32nd infusion last May 15. The actual infusion day/process pretty much went the same as it usually does. But there are events and circumstances prior that were a bit different.
The night before, we checked into the hospital. We arranged for a rental BiPap machine to serve as a backup to the one I was using. They didn’t have the same model as the one I’m using. Instead they had the older BiPap S/T available. We went ahead and rented that. Even if I couldn’t sleep anymore with that type of machine, at least I could be kept alive with it. Losing sleep is much better than not being able to breathe.
The thing is… when they brought the machine to the room, the guy didn’t bring a calibration machine. He assumed that the machine would give the pressure that the dial was turned to. Granted that’s the case usually. However since this is a rental machine, we bought bacteria filters to use with it. I wasn’t sure who had used this prior and if they cleaned it well. I didn’t want to catch a disease from the machine. The downside about the bacteria filter is it obstructs the airflow quite a bit. So the settings that the machine is set to isn’t accurate anymore. The only way you’d get the correct read out now is through a manometer, which he didn’t have. Oh well.. So I couldn’t use the machine. We still decided to keep it though just in case my good machine conks out.
My mom actually fainted due to that event. She freaked out because I couldn’t use the machine and she was really worried for me. If the good machine I was using decides to quit in the middle of the night, it would mean real trouble. She was ok though by the end of the night. We reassured her that it was usable and we just had to take out the filter.
Apart from that incident, everything else was pretty much quiet. We were able to start on time and finish early. I was supposed to have physical therapy after but I begged off since I had to come home early and wait for the technician to look at my machine again.
My 31st infusion started a day early that what it was supposed to be. May 1 is Labor Day and as such a non-working holiday. It fell on a Tuesday which coincides with my infusion day.
Since it’s a holiday the regular hospital staff has the day off. Only essential staff and doctors will be on duty. So we decided to move it up a day. Instead of May 1 I would be having my infusion on April 30.
Like most infusions it went pretty well. Except we started a little bit later. The Rehab doctor stopped by prior to us starting and talked to me. We’re starting a new program and hopefully that would really help improve my condition.
The whole infusion went well. Things of note though were, this is the first infusion that my mom wasn’t there, my doctor felt ill while we were having our infusion, we started a little bit later than usual. Apart from those things were pretty much as they usually are on any given infusion day.
I really thank God that so far so good.
Oh, my doctor said that the next ICAP approvals were already a done deal. Hopefully we get the next batch of enzymes before this current supply runs out.
The title says it all. I wrote about the photo shoot that I was on a few months back and now it’s finally published. The gruelling 7 hour photo shoot (well ok, ok, it wasn’t gruelling and 2 hours of that were spent having lunch) has finally paid off. Genzyme recently published its 2006 Annual Report.
I knew it was destined to come out some time April. I checked Genzyme’s website recently and the annual report was there already. I eagerly downloaded the PDF version and looked for the photo. I saw it moments after, in all of its splendid black and white glory. Ok, enough drama and exaggeration. To be fair it was a great photo.
The final photo was that of my dad and I. It was taken in Tiendesitas, a local shopping area. It’s an open type of shopping area. My dad was pushing me down a walkway that was lined with stores selling native art and crafts. If I’m not mistaken I was looking at a drum made by an indigenous tribe.
I feel really honored to have been chosen by Genzyme to represent Pompe patients and Myozyme users in their Annual Report. The past year has truly been a blessing since I am able to receive Myozyme and representing patients in the annual report means a lot to me.
Does this mean the start of my modelling career?..... Nah… I don’t think so…
I had my 30th infusion last April 17, 2007. How time flies by so quickly. I can’t believe it’s been 30 infusions already. It would have been sooner hadn’t it been for the slight interruption in our schedules. But even with the delay, time seems to have still flown by so fast.
It’s a milestone indeed. I’m happy to have gone this far without much setbacks. I’m happy and keeping my fingers crossed that despite 30 infusions I have yet to suffer an adverse reaction. I hope it stays that way. It’s just a bit worrisome since some patients have reported allergic reactions even after 30 infusions. I’m still banking on the fact that I’m not the type of person who has many allergies. In fact, I can’t remember a specific substance that I’m allergic to.
The infusion day started out ok. We were early for a change. In fact, we were so ahead of schedule that I didn’t even get to do somethings that I normally do as part of my pre-infusion ritual. The resident tasked to do insert the I.V. line was there at around 9 a.m.
She got the line in one go. That’s definitely a plus. On the flipside though, she forgot to flush it with saline solution. The blood clotted a bit. So my regular doctor had to flush it out later on. But no biggie.
Funny thing was, the resident was looking at me after she finished inserting the line and asked, “so were you able to finish highschool?”. I answered her in a joking manner, “doc, are you trying to insult my intelligence?, I have a degree in Industrial Design”. We laughed at the same time. She was then quick to say that she thought because I was sick I wasn’t able to finish school. She said I looked sick coz I was lying in bed. That’s quite true. I am sick. But I guess I’ve always thought that being sick isn’t an excuse to stop doing things. Besides I was much better when I was younger so it wasn’t really that hard to finish school. If I had to do it now, then that’s another question. I’d still finish it but it will be harder.
We started infusion at around 10 a.m., that’s ahead of our regular schedule. We usually get started at 11 a.m. I was hoping that we’d finish on time. However even prior to starting infusion I was really feeling like I was going to have a cold. I told my doctor this and she would have postponed the infusion if it were not for the fact that the Myozyme was mixed already. We couldn’t waste it. I told her also that I wouldn’t allow a delay. I would deny that I was sick if it came to that.
The infusion finished early. By 1:30 p.m we were done. I thought I was going to finally be able to go home early. Nope. Life had other plans. My cold got worse and I developed a cough. I couldn’t expel it properly so I got stuck in the hospital room for the rest of the afternoon. Till such a time that I felt well enough to go home.
I got worse the next day. Developed a slight fever caused by the cold. It wasn’t that bad though, just took some cold medicine, drank a lot of liquids and slept the whole day. By evening I was starting to feel better. The fever was almost gone.
48 days after my last infusion, I’m finally back on track. Yeah baby! April 3 marked my return to regular infusions. At least for the next 3 months it will be back to regular programming.
I’m really happy to be back on Myozyme. The progress I was having got side tracked so I’m really excited to get back into exercising more. The last few weeks when I wasn’t on Myozyme, it was a little bit more difficult to exercise. I get tired quicker.
The hospital stay is similar to the previous infusions with the exception of two things. One is that I got to use the newly renovated rooms of the hospital. Nothing big really, new paint, some new furniture and other small things.
The second is that for the first time my regular aide wasn’t there. We’re starting the transition. My regular aide Jordan is going on to better things. He’s hoping to land a new job in Qatar. So for the first time it was just my new aides. Well not new actually. Mike was my old aide but he left for awhile. Jhonny is the newest addition but he’s also Mike’s brother. They aren’t as qualified as Jordan because Jordan took up Physical therapy but so far I’m ok with them. They make up for it in other ways.
Thank you God for making the infusions possible again. Thanks to the guys at Genzyme, thanks to my doctors and all my family and friends who prayed that I get back on track as soon as possible. You guys rock!
