28th Infusion

Well I just got my last infusion of the current batch of Myozyme on hand. We now officially have run out of our supply. The good thing is that the ICAP has been approved to be extended for another 3 months. The bad is that well, due to delays in paper work I’ll most likely have to skip a session. That sucks. Why? Coz I think I’ve been making progress with my exercises. I know Myozyme has been helping with that. I’m actually feeling my arms get stronger. My arms are also slightly bigger now. Every time I skip an infusion, I feel as if I’ve taken two steps forward but one step back.

Anyway.. my 28th infusion went well. Most of it was pretty much the same as the others. Nothing really different. Oh, except for the fact that they had to poke me 5 times to get the line in. The last time was also the most painful one thus far. I’m not sure if it hit a nerve or something but thank God I can’t move my arms that quickly. I would have grabbed the needle from the intern and yanked it out myself. Hahaha.

Funny story though… My regular nurse, wakes me up at 7 a.m. I’m still groggy and half asleep. She tells me that she can’t make it for her regular shift to watch over me since she’s still stuck with another patient. She said she was sorry. After that, she tells me, to make up for it she has a Valentine’s day present for me. I ask her what. She tells me she’ll introduce me to a girl later that afternoon. The daughter of her patient. She said that she’s cute and nice. She’ll introduce her to me. I was awake at that time, laughing and astonished at what she just said.

I thought she was joking. Apparently she was serious. She did introduce me to her later that day. I was embarassed for the girl. She dragged her all the way to my room just to introduce us. The girl was nice. She’s been staying and watching over her mom for the last week or so.

As funny as the story is, I was really touched. I told my nurse that I was really happy with what she did for me. Not so much that she introduced the girl. I’d probably not see the girl ever again. I was happy for the plain and simple fact that she still believed in me as a person. She saw that I was a good person and deserved to be introduced to someone else. I don’t know how to explain it..

I guess something close would be like this. I have some friends who would be happy for me if I found someone else but I don’t think they’d go as far as set me up or introduce me to another girl for fear of the wrath of the other person. Ok that’s a bit exaggerated. But you get the point. They like me and root for me but not as far as actually take the next step and believe that much to actually introduce me..

Anyway, my nurse believed in me that much. That’s what I’m happy about. There’s still some people who see past my disability and still see me as a good person, worthy of an introduction to someone else.

27th Infusion

I got my 27th infusion last Tuesday. This is the second to the last dose of the first batch of Myozyme on ICAP. I was just told that the extension for the ICAP has been approved for another 3 months. Fantastic news! I just hope that it arrives on time here in Manila so I don’t have to skip another infusion session.

The last few weeks have been especially good for me. I’ve been exercising more and I’m seeing the benefits. Even if they are small. My arms are getting a little stronger.

My infusion went on pretty much as expected. Quiet with no problems. Well, except that the first infusion pump we used didn’t seem to work. We had to wait almost an hour to get it replaced. Oh well. Aside from that everything went well. We’re getting a little faster in fact. We’ve cut down the time in between the adjustment of the rate of infusion to 15 minutes.

Still, I’m quite worried. Some patients have experienced adverse reactions after so many infusions. Some have experienced it after getting 20 plus infusions. I’m really, really hoping and praying that I don’t get those reactions. I’m counting on my not being allergic to most things as a good sign. Please, please God let the following infusions go well.

I was able to go home early from the hospital. We had a family dinner at home after. My uncle who’s on vacation from the US had dinner at home together with the rest of my dad’s siblings. He was set to fly back the next day. The two weeks just flew by so quickly.

It was a great dinner to cap of a relatively great infusion day. Hey, any infusion day without any untoward incident is a great day in my book.

26th Infusion

Well… I forgot to write about this one after I had it. The reason I remembered is that I’m going for my 27th this Tuesday.

The 26th infusion went well all in all. There were several things that weren’t normal. One of my regular aides, wasn’t available that night. He had to go home to the province to take care of some stuff. He’s resigning next month and so after 3 years of service it’s time for him to move on to better things.

I’m actually quite a creature of habit when it comes to things like my infusion. I like things that are familiar. I wear the same things during my infusion day, eat relatively the same type of food, do the same routine. This time though I didn’t have my regular aide plus I forgot my lucky Livestrong bracelet. So needless to say I was a bit uneasy.

However the next day proved to be much like any other infusion day. Things went without a hitch. I had a quiet but pleasant day.

Looking back, I’m grateful to have reached the 26th infusion without any major headache.

Some patients have experienced adverse reactions after 30 or so infusions. So I’m actually quite nervous but I’m just relying on the fact that I’ve never really gotten allergies much in my life. I’m hoping that my body will continue to accept Myozyme and we’ll proceed without a hitch.

25th Infusion

I went to the hospital last December 18 in preparation for what was to be my 25th infusion. It was scheduled for the next day.

Things were pretty much the same as the usual nights before an infusion. Except that the Christmas spirit was in the air. Sure times are a bit tough now but that doesn’t stop people from celebrating Christmas. The hospital had pockets of Christmas decors set-up by individual groups per section of the hospital. Some were having their Christmas party, some were preparing for their own party while there were people who have already finished their celebrating.

The night went pretty much quietly. My aides and I ate our dinner, watched T.V. and basically just passed away time till we all fell asleep.

Infusion day went the same as it pretty much does. It’s just less strict now when it comes to procedure since the infusions now aren’t under the Expanded Access Program (EAP) anymore. Instead this is our second infusion under the International Charity Access Program (ICAP). That being said, it doesn’t mean that the doctors and nurses are being lax about the infusions. They’re are still taking the necessary precautions to make sure that I have an uneventful and safe infusion.

My 25th infusion effectively marks my one year on Myozyme. December 19 is one day shy from the day I got my first infusion which happened December 20, 2005.

Having been on Myozyme for a year now I am extremely happy and grateful for the year that has passed. I’m happy that I was able to survive this year intact. Nothing untoward happened to me during my infusions. Except for “one eventful infusion”:http://www.fightpompe.com/article/38/6th-times-a-charm, the rest pretty much went well.

I’m grateful for the year that was. I’m grateful for having the chance to receive Myozyme and continuing to do so. I’m grateful for the team of doctors that have cared for me this year. They have done a wonderful job in making this experience a good one.

I’ve been hearing some bad stories of other patients and their experiences with infusions. Some of them have been unable or had a hard time getting Myozyme. Some have had troubles during their infusions with some patients suffering from a mis-inserted I.V. line thus the enzyme not being able to get to the blood where it’s supposed to go. I’m grateful and extremely happy that I’ve had very little bad experiences with infusions.

I thank the lord for giving me this year. A fellow patient asked me if what benefits or what improvements I’ve felt over this past year with Myozyme. I honestly will say that there is a little improvement. Not much by other people’s standards. I’ve managed to get back to going out again although still not as much as I’d want but certainly better than a year ago. Energy has improved however strength has not.

However the biggest thing for me is that while this is liitle improvement, at least there’s no continued progress of the disease. Without the Myozyme I’m not sure what state of health I’d be in right now. So I’m grateful I’ll be living another year to Fight Pompe.

Time flies by so quickly. It’s been a year. Here’s to another year with hopefully more improvements to come.

Myozyme Is Here!


I received some good news today. One of my doctors sent me a text message saying that the Myozyme shipment has finally arrived at their office. Woohoo!

It’s a week late but still better now than never. We scheduled a Tuesday infusion which is the soonest we can do it. My doctors are only available on that day or Thursday. Tuesday is also my birthday. Eventhough there are other ways or places I’d like to spend my birthday on, the hospital is a good place as any. Why? Well simply because it means I’m getting my infusion on that day. That’s a blessing. That’s a great birthday present.

Now only one more thing is in the way of my infusion. Getting a room! The hospital currently is fully booked that we can’t even reserve a room. They told us to call back Sunday afternoon to see if there’s a room available. I’m crossing my fingers.

23rd Infusion

I’m here posting this entry just hours after I finished my 23rd infusion. This infusion is special because it marks my last infusion on the Expanded Access Program (EAP). Since Myozyme has been approved by the FDA, Genzyme has been transitioning EAP participants to other programs. Some patients have gone on to have their treatments covered by their insurance companies while there are some like me who have to apply to the ICAP or International Charity Access Program.

The Philippines does not have the same insurance industry as the U.S. or Europe. Reimbursements for treatments like this is unheard of here. Heck, most people here don’t have health insurance much less something that can cover something as expensive as Myozyme.

The ICAP aims to help get treatment to patients such as I who have no means as of yet to continue treatments as expensive as this. We’ve applied for the ICAP and have gotten a 3 month grant for it.

The medicine isn’t here yet and the papers are still being worked out. Hopefully it arrives on time. Pray it arrives on time for the next infusion.

As for the actual infusion session it was pretty much the same as most. Nothing eventful. Oh, except waking up to have a cute resident come in and look at me before the infusions started. It sucks to be in a situation like that since your first impression is literally down the drain. There’s nothing as appealing as a newly woken person with all the things that are associated with a sleepless night. More on that later. Suffice to say.. I don’t think I made a good impression to that resident.

I did have a sleepless night because my stomach was painful. I finally couldn’t take it anymore and had to go to the bathroom at 4 a.m. and see if that can solve the stomach problem. Apparently it did.

So I fell back to sleep around 6 a.m. and got around only 2 hours of sleep.

Apart from that, the day went well. My lead doctor couldn’t come. She’s on a trip to Spain. So Dr. Lynn substituted for her. Of course I have my regular doctor and talking buddy Dr. Lani. I think over the course of the year I’ve been on treatment we’ve gotten to know each other well due to our conversations. Most of the time light, sometimes serious but always enjoyable. I really appreciate those conversations.

My regular nurse couldn’t make it as well so it was for two sessions in a row Carolle.

Oh, I had a bigger room this time since the regular rooms we use aren’t available. I really thought this room would be better since it was more expensive. Honestly it’s not. It’s just bigger. Most of the space you don’t really need. You just have a bigger hallway with a lot more cabinets. If you’re staying overnight, you just don’t need that extra closet space…

Here’s to the 23rd infusion and coincidentally I keep using Michael Jordan whenever I give my talks and I know end the EAP with his number. How cool is that?

22nd Infusion

My 22nd infusion was a day earlier than originally scheduled. Tuesday was declared a national holiday. So they had to move my infusion one day ahead of schedule. Some parts of the hospital such as the pharmacy only have skeleton crews during holidays so my doctors were worried that we might not get decent attention on that day. So we decided to play it safe and move it one day ahead.

I went to the hospital Sunday evening. Checking into the hospital was faster and smoother since there were only a handful of people in the admitting section that day. All was well.

I spent Sunday night reading and watching T.V. Doing everything I can to stay awake. I wanted to watch the Brazillian Grand Prix. A special formula 1 race, it being Michael Schumacher’s last. It was set to air live at 1 a.m.

Suffice to say I woke up Monday morning still feeling sleepy. I got up at around 7. We ordered breakfast and ate. I had my usual breakfast, pancakes and sausages.

The infusion went well as usual. Except for a power outage but luckily like most hospitals, PGH has a power generator so the power interruption was temporary.

It’s my 22nd infusion and currently the second to the last of the batch of Myozyme we have here. The hospital has only one more batch in stock before it runs out. We’re all praying that the new batch arrives in time. It would be a shame if the infusions have to be interrupted. We’re slowly making progress and as much as possible I’d like to continue building on that progress. Myozyme is too expensive to waste and an interruption of the infusions will set us back.

We’re preparing for this contingency in the sense that I might have to get the next infusion 3 weeks from now instead of 2 to extend our time. Hopefully that extra week can get the meds here on time.

Going back to the infusions… I finished on time and got to go home on time as well. It was different this time since my mom wasn’t around. She usually comes whenever I have an infusion however she was about to leave for a trip to Taiwan and she needed to prepare. So for the first time since we began it was just me. Oh ok.. well not just me. My aides were there and the doctors and the temporary nurse and some other visitors..

21st Infusion

October 10 marked my 21st “Myozyme”:http://www.myozyme.com/ infusion. I know I’ve said it before but I’ll say it again, how time flies by so quickly. I can’t believe it’s October and that I’m on my 21st infusion. It really seems like yesterday when we I had my first.

The previous night when like most nights when we’d check in to the hospital. Unlike the last two times though I wasn’t coughing anymore so I had a relatively easier time. I won’t dwell too much on the previous night as it was for the most part uneventful.

The next morning we woke up earlier. It had been agreed upod last time that we’d try to start the infusions earlier than what we have been doing. This meant getting up a full hour earlier. I woke up at 6 a.m. and we all started the day. Stretching, breakfast, bathroom, etc.. Normal routine.

My doctors came in at 9 a.m. to prep me for infusion. Dr. Lani and Dr. Conch were there to put in the I.V. line. (Dr. Conch, if you’re reading this, there you’re on my blog!, Dr. Lani told me you were “nagtatampo” coz I didn’t write about your inserting skills. hahaha. ) Dr. Conch was the one who inserted the I.V. line. I must say she did a good job as she got it on one go.

We started the infusion at 10 a.m. The whole thing went well, as in most days. The lead Dr. couldn’t make it today because of other more important matters. The day went well. We sang a little, while watching the “Karaoke”:http://en.wikipedia.org/wiki/Karaoke channel, had a very interesting covnersation with Dr. Lani. Overall a really good day.

We ended earlier. The infusion was done around 1:30 p.m. and I had lunch shortly thereafter. I think I like this schedule better since we finish earlier and I get to go home much earlier.

20th Infusion

I had my 20th infusion last September 26. Yes, the big “Two Oh”. I can’t believe it’s a little over 9 months since I first started on Myozyme. How time flies by so quickly.

The night before still started out a bit bad. Like the previous session I had come to the hospital again with a cough. It always develops on the ride to the hospital. I figure it’s because the phlegm gets rocked in my lungs and gets loose on the ride there. Honestly, that’s just my speculation. I don’t really know what happens. It just does.

They had to bring me in with a stretcher again. Every time I’d sit up the phlegm goes down to my lungs and I can’t seem to expell it out. So lying down helps ease the coughing.

I got to my room. The unlucky room 731. I drank some medicine, turned sideways and waited till I could cough out the phlegm. It eventually came out. Thank God.

The rest of the night was uneventful. Except for the ECG test that I had to do. It’s been 9 months and every 3 months they do some tests to see if I’ve made any progress. The ECG is one of those tests.

I woke up on infusion day (Tuesday). I had to get my weight before having breakfast. I’m happy to note that I gained weight. Prior to this I’ve been losing weight the past few weeks. I really think it was because of the food supplement I was taking. I switched to Ensure Plus two weeks prior. I gained 2.5 kilos because of it. Whoa!!! 2 weeks before I weighed a measly 39.5 kilos. I’m now at 42 kilos. I hope my weight gain continues.

I ate breakfast after. I didn’t get my usual breakfast which was pancakes and sausage from McDonalds. Instead I got Tapa(some kind of beef jerky) from Jollibee. I just wanted to try something new today. Needless to say I’ll be going back to my regular staple next time. Didn’t like the Tapa much..

This time I was lucky. Inserting the I.V. line was a one-shot deal. The resident did a great job. It’s better since they were able to use the same line to draw blood from me. I needed to get some bloodwork as part of the tests.

The infusion went well.. Till the time that the pulse oximeter that we were using sparked and caught fire. Not a big one though. Just enough to make the room smell awful. The nurse saw it at once and pulled the plug out of the socket. That got my heart racing. I forgot to mention that the night before, the refrigirator sparked as well. It must have been the wiring of the room.

A doctor whom I haven’t seen in a long time dropped by. Dr. Lynn came by together with my regular doctor. It was great seeing Dr. Lynn again. She’s been an instrumental part of my getting Myozyme and it was good to finally get to see her again. The room was filled with chatter. Catching up and other conversations. My mom was there as well as she’s always with me during infusions. Stories were exchanged, laughter filled the room and it was just basically a pleasant afternoon.

We finished at around 3:30 in the afternoon. I had lunch after. I usually don’t take anything during infusions. Only water. I just don’t want anything to interfere with infusions so if I can avoid it I don’t take anything in.

All in all the 20th infusion went well. I’m really now used to this that every infusion is as uneventful as the last. I hope it continues to be this way.

19th Infusion

Finally! Something interesting to write about. My 19th infusion or at least my hospital stay didn’t start out as I planned it to be. However things did turn out well in the end. That’s always good.

Monday was a busy day. Apart from work, I had participated in a call for a conference that Genzyme was doing in Japan. I gave one of the patient testimonials. The hard part was that I was talking on the phone but could not hear the reactions of the crowd. So I had to give the testimonial blindly or I should say deafly. Is there such a word?

After the call we got ready for the hospital. As I was riding the car, I started coughing again. I had a bit of a cough the day before. But not so much to warrant a doctor’s visit. The thing is, if I sit up the cough gets worse cause the phlegm goes down to the lungs. I have a technique to expel it but it doesn’t work in the car. I had to recline my chair and try to keep as leveled as I could so I wouldn’t cough much. We got to the hospital and waited a long time for the room. Really, sometimes the hospital tests your patience. First they said we had a room already. Next thing they say there’s still someone occupying the room. They gave us another but it still has to be cleaned. So it took an hour and a half for us to get a room.

In order for my cough not to get worse, they wheeled me into the room on a stretcher. Ha! It was quite a trip going through the usual route looking up at the ceiling. A whole new way of looking at the same old route.

The rest of the night went quietly. A dinner of cheese burger came after my being able to expel the phlegm. Not a good way of painting a picture of my dinner but hey, that’s how it happened.

Infusion day went better. I was up at 730. We ordered breakfast, did some stretching, ate and did all my morning rituals. By 10 am I was ready for the infusion. The enzyme was prepared early. We usually start at 11 and this time the enzyme was in the room by 10. We got a little sidelined from a visit of another doctor. My regular doctor could not make it since her son is sick. Another doctor dropped by to assure me that if I had any problem that she was just there in the hospital. One thing that reassured me though was that my other regular doctor was there. I trust her completely so I felt good.

What made the this infusion day different was a guest. A special guest. Chris, my ex girlfriend a good friend was in town for a visit. She lives in NY and she’s here for a short vacation. She decided to spend the day with me. She wanted to see how an infusion goes. She came by the hospital at around 11am and spent the day there. She also saw my mom for the first time since she arrived. My mom and Chris have always gotten along well and I’m sure both of them were glad to see each other.

The infusion went well. We finished on time. No difficulties whatsoever. I’m glad that Chris was able to share that experience with me. It’s a big thing for me.

Chris wanted to go to the Chapter Assembly of the Singles For Christ Chapter I belong to. She said it was important that she went. I told her if I felt well enough I’d go with her. I did feel well enough to go and so I did.

The evening went well. She had a good time at the assembly and I was just really glad I could be there to accompany her.

It was a long day but a good day nonetheless.