The Journey Begins

Monday, Dec 19th 2005

I was anticipating that Monday would be the start of my very monumental journey towards turning the Fight vs. Pompe for the better. I did not expect though that this is how it would turn out.

As of the prior weekend the release of the enzyme was still in limbo. The freight forwarders that were handling the importation of the medicine said that the papers were still being processed. My mom called their office and ask what we could do to speed things up. They said that they’ll try their best and to call them up on Monday for an update.

Ok, back to Monday. My mom called the freight forwarder Monday morning to follow up on the release of the enzyme. This time they said that they’re committing to delivering the enzyme at 5 p.m. that afternoon. They were confident that they could deliver. Enough to promise a guarantee. My mom called the hospital that same morning to check if there was a room available already. The hospital said that they were holding a room for us but we needed to check in by 2:00 p.m.

Upon hearing the good news my mom came into my room and excitedly told me that I needed to get ready. We needed to get to the hospital before 2:00 p.m. Now for someone like me, it takes quite awhile to get ready. So i tried to hurry things up as much as I can with the help of my aide. I finished taking a bath, dressing up and packing at around 11:00 a.m. We needed to leave the house no later than 12:30 p.m. I had an hour and a half to kill so I spent that time preparing some stuff at work as well as sending a few emails.

We left at 12:30 on the dot. The trip to the hospital was a relatively quick one. We got to the hospital at around 1:30 p.m. My mom and dad went down ahead to see if everything was in order.

PGH, the hospital where the infusion was to take place at is a public hospital. As such we weren’t very oriented on how things were done. Since we were accustomed to going to a private hospital near our home. Public hospitals here in the Philippines are really severely under funded and over booked/worked. PGH is not exempted to that, even if it is the biggest public hospital in our country. I’ll reserve my observations about the hospital for a different time.

We were doing this at PGH because this is where the UP National Institute of Human Genetics is connected. They are the ones who are leading the research and treatment for Genetic disorders here in the Philippines.

Dr. Sylvia Estrada met my parents at the admission section of the hospital and assisted them in the arrangements for my stay. Luckily there was a “pay ward” or a private wing of the hospital wherein patients can get private rooms. We got a room at that wing of the hospital.

By 2:30 p.m I was already checked-in and was in the hospital room together with my parents. The actual infusion was going to be done on Tuesday morning but we decided to go a day before just to make sure we had allowance for additional tests if necessary. True enough we needed to do one last blood test. The pulmonologist on the team wanted an ABG test done to be sure that my blood gas levels were acceptable prior to the start of the treatment.

We spend Monday afternoon and evening at the hospital room. I had several guests that afternoon and early evening. Some people from my dad’s office who also happened to be at PGH stopped by. My uncle also came early evening to wish me well since he could not make it on the day of the infusion.

Tuesday, Dec 20 2005

At somewhere around 2 or 3 in the morning the phone rang in my hospital room. Someone called and asked if he could speak to the relatives of the dead. It was my aide who answered the phone but told me about it. I thought, “What the?!?!” Was this a sign of things to come? That added to my already anxious and nervous state. I didn’t get to sleep that much during the night. Thinking about what was going to happen in several hours as well as the occasional monitoring done by the nurses.

By 6:00 am I was getting ready for the infusion since we were scheduled to start the infusion at around 8 a.m. However we got into a slight delay. I won’t elaborate on it anymore since I’d like to focus more on the positive aspect of the day. Suffice to say we were able to get back on track at around 10 to 11 a.m.

My friend, who’s a professional photographer came by to take pictures of the infusion although he had to leave at around 11 a.m. since he had to go back to the office. He wasn’t able to take pictures of the actual infusion since he only got time off for a few hours and because of the delay, he ran out of time.

In hindsight everything was for the best. Some of the important people in my life were able to make for the start of the infusion. My grandmother came in the nick of time at around 12 noon.

By 1 p.m. we were good to go. The I.V. needle was stuck in my arm already and the enzyme was connected to the infusion pump. We started the infusion with a prayer led by my aunt. I specifically asked that we say a prayer before we started. After the prayer I said a simple thank you to my family, doctors and friends who came to share the monumental experience with me. After a few words, my mom ceremoniously pushed the start button on the infusion pump. After the enzyme started dripping the room was filled with cheers, tears and expressions of happiness. The room was also drowned by the sound of “Hallelujah from Messiah” by G.F. Handel. My mom also brought some balloons to make the occasion a bit livelier.

The whole infusion took around 4 hours. The lead doctor and her assistant stayed in the room to monitor my progress throughout the infusion. Apart from the initial elevation of my blood pressure everything else was fine. I attribute this to nervousness.

By 5 p.m. we were done. All that was left to do was observe me overnight and see if I have any reactions to the enzyme. The doctors weren’t expecting anything to happen. They said, they were more worried with the next few infusions since the body has had the chance to create anti-bodies.

I slept relatively well that night sans the occasional interruption by the night duty nurse to take my blood pressure and check other vital signs.

Wednesday, Dec 21, 2005

I woke up at around 6:30 a.m. raring to go home. As much as I’m happy that we’ve started the infusion I couldn’t wait to go home. Several days without my Powerbook and the internet was starting to get to me. I was restless already and wanted to go back to the comforts of my own home.

Some of the doctors came by over the next few hours to give me a final check-up before processing my discharge orders. My dad and mom arrived around 9 a.m. along with my dad’s good friend who flew all the way from Indonesia just to visit and wish me well. We spent the morning chatting and killing time since the hospital could only fix our discharge papers at 11 a.m.

By 12 noon we were out of the hospital and on the way back home.

Afterthoughts

The above is a condensed account of my experience. Some of the details I intentionally left out. One because I’m still a bit tired and two I’d like to keep some of them private for personal and other reasons.

I thank God the whole thing went well. I thank my family for the continuous support they’ve given and continue to give me. It’s hard for them
emotionally, physically and financially but they don’t complain. I’d like to thank the great team of doctors who made this possible, my friends for the prayers and support and Genzyme for giving me a chance to improve my life.

I’m taking this experience one step at a time. I don’t know how the treatment will affect me. All I can do is try my best and see how it turns out. In the end it’s really all about giving it a go.

This is just the beginning.

Fight Pompe!