8th Infusion

Well it was time for my 8th infusion. By this time we have the whole process down to a routine already. I won’t write about it anymore but suffice to say, we went to the hospital, checked in, got the room, had the infusion the next day and then went home. I will however just write about the highlights of this particular infusion.

My friends Bambi and Aldrin came by to visit the night before I had my infusion. I’m really happy they took the time out to drop by. We ordered pizza and had that for dinner. We were watching T.V. most of the time but towards the end we got engaged in conversation. Laughs were shared, insights were brought forward and all in all it was a good time. I thank them for making my night a lot less boring than it would have been.

The infusion day went without a hitch. As much as it is boring in the sense that I’m just lying down the whole day, I’d rather it be that way than have something happen. I do however always look forward to talking with my doctors. It’s always a pleasure to converse with them. I’m also glad that I have them onboard. They are the warmest, caring and nicest doctors you can find. They take the time out to spend 4 to 6 hours with you to make sure you get the best care possible.

Oh, lunch was good…. I had roast beef after the infusion. I always look forward to infusion day because it means trying different kinds of food from the different restaurants surrounding the hospital…

On a side note.. I should really think of more creative titles for my entries….

Lucky Number 7

March 14 marked my 7th infusion of Myozyme. Wow, how time flies. I can’t believe it’s already the seventh and the third month I’ve been on the Expanded Access Program.

Unlike the 6th infusion which was event filled and action packed, the 7th is a starck contrast.

I checked in on the evening of the 13th. I was surprised that the whole process was quick this time. In less than 30 mins I was already in room 739 of the PGH.

The only incident I’d conisder during the whole stay was when I woke up suddenly on the morning of the 14th. I felt or in hindsight probably imagined my bed shaking. I thought that an earthquake had just occurred. I immediately woke up my aide, to his surprise. I asked if he felt the earthquake. He replied in the negative.

Since we were already awake we started getting ready for the infusion. We ordered our breakfast. As usual, breakfast came from McDonalds.

I did my morning rituals, stretching, breakfast, brushing my teeth, putting on my luck charms (cross necklace, fight pompe t-shirt and my livestrong bracelet). By 9 a.m. I was all set.

As it was my 3rd month on the program some tests needed to be done to monitor the progress. I had those done the saturday before the 7th infusion. I have an interesting story about that but I’ll reserve that for another entry.

Needless to say that the tests when compared to the baseline tests I had done prior to starting was good. The indications of the test point to some improvements. I’m keeping my fingers crossed.

True to form as being an uneventful infusion, even the sticking of the I.V. needle and blood extraction went well. It was a one shot deal. All it took was one try and the needle was in and the I.V. was ready.

We started close to 11 a.m and finished at around 3 p.m. That’s good time. We were able to go through the whole process without hitch which meant that we were able to go to the maximum infusion rate.

After 3 months on the program, I must say as a whole I am feeling much better. I know I’m better off now than I was last december. I feel my energy is getting higher. I started in really bad shape and now I’m slowly working my way to a better state.

Fight Pompe!

6th Time’s A Charm

Well… Not quite…. What I thought was going to be another uneventful infusion turned out a bit differently.

It started out the night before… Just before checking in the hospital I developed a mild cough. I usually have irritations that result in coughing. A few hours after it developed to one of the worst coughing spells I’ve had ever.

By 11 p.m. I couldn’t breathe anymore. My right lung was filled by fluid at that time. I couldn’t expell it. The resident doctor on duty was called by the nurses. She came into the room and decided to use the suction machine to take out the Phlegm. Long story short.. it took a few hours, several attempts at suctioning, my parents driving all the way back to the hospital and a lot of physical effort, but we finally had it under control by around 1 a.m.

It was only at that time that I was able to have dinner.

The next day the doctors were debating whether or not I should go on with the infusion. I had to get a blood test, x-ray and an ECG done to see if I could go on with the infusion.

After a few hours of debate and consoltations the doctors decided to go ahead with the infusion. That and because I told them I wouldn’t leave the hospital without the infusion…. Ha!

One thing that I failed to realize that in hindsight I know didn’t help was the fact that during breakfast I drank coffee. I was feeling cold and decided to drink coffee to warm myself.

The coffee, cough medicines, the anxiety, lack of sleep and the enzyme all added to my having a high heart rate. So much so that the doctors decided to stop the infusion.

They infected anti-allergy medicine as a pre-caution. I felt weird for awhile. Numb and drowsy. I slept it off for a couple of hours. I woke up feeling better.

The doctors decided to continue with the infusion. Everything went well after. We finished at around 9 p.m. later than what we anticipated. But as the saying goes, “better late than never”.

I had to stay an extra day at the hospital as precaution. By Wednesday morning I was feeling well and was able to go home.

I don’t know if it’s by sheer coincidence or what, but before the start of the infusion, I took of my cross pendant because I had an X-ray done. It went hay-wire that time. When we took the break from the infusion, I realized that I wasn’t wearing it. I put it back on and everything after that went well…. I choose not to see it as a coincidence but simply a reminder that I need God’s help to get through this.

Well, I’ve had enough excitement and hope that the next infusions go without incident.

Fight Pompe!