10th Infusion

I just came back from my 10th infusion last night. Like most of my infusions it went well.

Some new things though. One, we brought along my new aide. Temporarily taking the place of my old one. My new aide, Junior is the brother of Mike. He’ll be taking Mike’s place till he comes back from vacation. How long… I’m not really sure. It’s an indefinite leave. I hope it’s a short one. He said he’ll try to come back in a few weeks. Anyway, Junior came with us to the hospital to learn the ropes.

Another thing, I’m getting used to getting a needle stuck in my arm. During the first few infusions, I really couldn’t look at my arm when they stuck the needle in. I had to close my eyes every time and think of something else. This time though I was able to look at the procedure while it was being done. One thing I observed, the “thingy” they stick in your vein, at first I thought that the needle that they stuck in stayed there the whole time. I was wrong. The needle is attached to a plastic device that remains in the vein when it’s stuck. The needle to my relief is pulled out after. Imagine that… All this time I thought it was stuck in my arm. I wouldn’t move my arm because of fear that the needle might stick somewhere else… Now I’m relieved that it’s just plastic that bends quite easily. At least I know I can now move my arms better.

As for the rest, it’s same old, same old. I lie in bed, they stick the I.V. in, the infusion goes on for several hours, they take the I.V. out, I rest and they observe and finally a few hours after I get to go home. Oh, lunch is somewhere there in between.

Not very exciting but like I said before… That’s the way I like it.

Fight Pompe!

9th Infusion

April 11th marked my 9th infusion of Myozyme. Things weren’t the same as it should have been. My regular nurse couldn’t make it so a substitute took over. The lead doctor could not be there at the start of the infusion since she had a meeting with the board members of the soon to be formed Philippine Society for Orphan Disorders. More about the society in a future post.

Now while things started a bit shaky and not with the routine that I’m used to, the day eventually turned out ok. The infusion went ok as a whole. We finished a little later than anticipated but not by much.

The highlight of my day was the visit of my Uncle Jonee, Aunt Puri and Grandmother or “Lola” which is the local term for Grandmother. My uncle and aunt live in california and are in town for a vacation. I was touched that they took the time out of their short stay here to visit me at the hospital.

It’s special as well because I got to share at least part of the experience with people that mean a lot to me and who have a done a lot for me as well. My uncle and aunt have been there to support me all these years. Every time we had a chance to go to the U.S. they would take us in their home and welcome us with open arms. They’ve also helped us in the past to look for possible doctors, treatments and the like. I’m really glad to have them share the experience with me. They mean a lot to me.

Other than that everything else is pretty much boring and uneventful. Every time that an infusion goes this way I am thankful. Uneventful is good.

Fight Pompe!

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!

5th Infusion

It’s been two weeks since the fourth infusion and now time for the fifth. How time flies by so quickly… It seems like it was just yesterday when we started the first one.

We left the house around 5:30 p.m. Monday. We got to the hospital around 6:30. Unfortunately when we checked in the room the hospital reserved for us wasn’t ready yet. They were still cleaning it. They asked us to return at 8 p.m. So we decided to go the the nearby mall.

We drove to the mall and all of us were amazed to see how much Malate has improved. Nakpil street was particularly interesting. With it’s bright lights and lively night spots and eatery. I’m not sure how long it’s been like this since this is the first time I’ve been to that area in awhile.

Dinner was bought at the McDonalds from the Robinsons Mall we went to. I had a cheeseburger, fries and a diet coke. Dinner the night before the infusion usually means junk food.

We checked in around 8:30 p.m. Settled in and the rest of the night went by without much fanfare.

I’m not one to complain much, however there is one thing I find annoying, that’s when the nurses decide to wake you up early in the morning to tell you that there’s some medicine missing because the hospital was out of stock. I mean, c’mon you could have told me this the night before… I’m not irritated because they wake you up but because it gives you very little time in the morning to get the missing stuff ready.

Apart from that I don’t really have much to complain about. The doctors and nurses are great and they’ve pretty much have taken good care of me while I’m there.

The infusion went really well. We started at 10 a.m. and finished at close to 2 p.m. Everything was stable. All my vitals were good.

Since it was Valentine’s day we had a special lunch with the doctors. We ordered for some Japanese food. I’m not good with food so pardon me if I don’t get this accurately but I think we had a bento box. Some had shrimp as a main course and some of us had beef.

We were discharged by 5 p.m. It was quite nice to leave the hospital with the sun still up. Like I said, since it was Valentine’s day it was good we got to leave early to beat the rush hour traffic.

Fight Pompe!

4th Infusion

January 31 marked my fourth infusion of Myozyme. We’re getting better at going through the routines of going for the infusion. We checked in the hospital the night before. Prior to arriving we already knew which room we’ll be in. We also noticed that a good time to check in would be aroung 7:00 p.m. when the line for admitting is not so long.

I got up at around 6:20 a.m. My aides and I ordered breakfast. We’ve been having McDonalds for the last three visits already. Due to the simple fact that it was the delivery number we memorized. I ordered pancakes and a sausage for breakfast with butter, strawberry preserve and some syrup. A glass of orange juice or orange drink I should say rounded up my breakfast.

The actual infusion started at around 10 a.m. It wasn’t as smooth as the previous one only because it took three tries to get the I.V. line in. Aaarrgghhh… I hate having small veins.

On the flipside, the infusion went without a hitch. We were able to go up to the maximum rate that was allowed by the protocol. We were finished by 2 p.m. 4 hours.. not bad…

The doctor said that if at 5 p.m. I don’t experience anything bad I could go home.

During the course of an infusion I’m not allowed to eat. So I was hungry by the time we finished. Lunch was good. I had Pancit Palabok and some pork barbeque. For those who are unfamiliar, Pancit Palabok is a native noodle dish. Don’t ask me what the ingredients are I don’t know all that’s included. All I really care about is that it tastes good…. and it does…

I finished eating around 2:30. To kill time I listened to the latest audiobook I downloaded. Tom Clancy’s “Executive Order”. This is my first Tom Clancy book and prior to this my only encounter with Tom Clancy is with the movie adaptations of “Hunt For Red October”, “Patriot Games”, “Sum of All Fears” and “Clear and Present Danger”. This is the first book of his I’m actually reading. Suffice to say I liked it. I usually don’t finish a book quickly but by the next day I had.

A funny conversation took place during the time I was waiting in the hospital. Around 3 p.m. two residents walk in to monitor my vital signs.

Now before I continue with my story, just a brief background. The doctors treating me are mostly in Pediatrics… Why? because most the doctors who treat metabollic patients see children. Hence most of them have background in Pediatrics.

Back to my story… So two pediatric residents walk in to take my vital signs. While taking my vital signs some small talk were exchanged… I’ll just include the funny part and dispense with the rest…..

bq. *Me:* So I must be the oldest patient you have.
*Resident:* No, we have a 19 year old patient.
*Me:* I’m 28….

Hahahahah! I’ll take that as a compliment, thank you… Apparently I don’t look as old as I am… Or that they just didn’t read the chart thoroughly enough… Either way, that made my day.. somewhat.

At 5 p.m we were set to go home but one of the doctors stopped by to say hello. Stories were exchanged and she shared her very nice love story…. I’m happy for her.

By 6:20 p.m we happily left PGH to go home… See you in two weeks PGH.

3rd Infusion

It was time again to make the journey to “PGH”:http://www.pgh.gov.ph/v2/ for my bi-monthly infusion. It’s funny how time flies by so fast. It seems like it was only yesterday that I was approved for the Expanded Access Program and now I’m writing about my third infusion.

We checked in on the evening of Jan 16th. As each infusion goes, it seems that things are going smoother, albeit there are still problems with room reservations, etc.. but generally things are getting better. The bad part though, We didn’t get the room we wanted. We got one of the older rooms. The paint was a depressing shade of gray. A stark contrast to the happy orange we got during the previous stay. But that’s about the only bad part. Everything else went well.

The third infusion went smoothly. Uneventful. Although they had to extract blood again from me for some tests, this time it was a one shot deal. They only had to stick a needle in me once. It was the same vein that they used to extract blood and for the actual infusion.

We had to proceed a bit slower this time due to the episode from the previous infusion. But unlike my second infusion, everything went smooth. Apart from the intial blood pressure of around 130/90, the rest of the time my blood pressure was hovering somewhere between 110/70 to 120/80. Quite good. I think the initial high was caused by the needle. I must say I’m scared when it comes to needles.

I won’t elaborate on the rest of hours that passed while the infusion was taking place. Suffice to say that much of the noise only came from the chatter between myself, the doctors and my parents.

Picture During My 3rd Infusion

During the infusion I wore the prototype of the “Fight Pompe” t-shirt derived from “May Ann’s”:http://frecklefaced29.deviantart.com/ illustration. I just printed it our on a t-shirt transfer paper on my inkjet just to see how it’d look on a shirt. The one I made was a bit too small and I need to adjust the design…. As you can see from the picture…

Funny thing though.. After the infusion the lead doctor told me that if after four hours my vitals were stable and I was feeling good then I could go home. 30 mins before I could go home, the resident I had a crush on walked in… This was the first time I saw her during my whole stay this time… She said that she’d take my vitals one more time before I go home. I absolutely, positively had to hold back everything and concentrate on not laughing or whatever just to keep my vitals stable. After she was done taking my vitals and left the room. Everyone inside was laughing, including me because they knew I had a crush on her. My pulse rate went up by almost 40 beats per minute. My mom was teasing that I might not be able to go home today because my pulse rate went up.. Hahaha.

Suffice to say that the spike in my pulse rate was really due to that and nothing else. A few minutes after the laughing it was back to normal. I was able to go home on time.

Oh well.. What will the fourth infusion bring? I just hope it’s as uneventful as this one.

2nd Infusion

I had my second infusion last Jan. 3, 2006. I know it happened a week ago but due to the migration to the new web host I didn’t get a chance to write about it. So better late than never…

I checked in at the PGH (Philippine General Hospital) on the eve of Jan 2. We decided to check-in the night before since the hospital informed us that they weren’t sure if I could get a room on Jan 3. In hindsight this was the best thing to do.

We got a nice room. The bathroom was cleaner and newer than the last one we got. The color of the room was also brighter. Unlike the first infusion, the night went quietly. After a dinner of hamburgers, I watched some tv and went to bed, anticipating having to wake up early the next day.

By 6:30 am I was up. My aides and I ordered breakfast from McDonalds. By 7:30 we was good to go. We started the infusion close to 10 am. This time it was done without fanfare. Prior to that though, the doctors drew some blood. Something I really, really (can’t stress it enough) hate. Everytime they draw blood from me, I feel like passing out. Call me chicken but that’s the way I am. I don’ t know if it’s just the sight of blood or something else…

Back to my story… This time the infusion went without much fanfare. When the I.V. was inserted I honestly didn’t know that the infusion had started already. I thought the doctor was still waiting for something and when I asked her when we were going to start, she said that the infusion had been going on for several minutes already.

The hours went by smoothly. Apart from a brief 30 second episode wherein my pulse raced. The doctor brought down the rate of infusion until my pulse stabilized. After that she slowly brought it back up to the maximum rate allowed by the protocol. I don’t think the episode was a result of the medicine. It was probably just a case of nerves… or I was still recoverring from losing blood….

After that, everything went well. To my surprise, the doctor said that If nothing untoward happened after a few hours, I could go home. I was extremely happy to hear that. I was expecting to stay another night. I really wanted to go home since there was nothing much to do at the hospital.

Today, one week after the second infusion everything is looking good. I’m not experiencing any side effects, no itchiness, numbing or anything like that. I’m praying that the next infusions will also remain trouble free.

Oh, I gained half a kilo since the first infusion. I don’ t know if that’s because of the enzyme or the holidays…. Maybe both…

Till next time…

Fight Pompe!

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!