My Dad and I On Genzyme’s 2006 Annual Report

The title says it all. I wrote about the “photo shoot”:http://www.fightpompe.com/article/132/so-thats-why-models-are-paid-a-lot 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”:http://www.genzyme.com/corp/investors/fin_fact.asp.

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”:http://www.genzyme.com/2006_ann_rpt/2006_annual_report.pdf 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.

!http://www.fightpompe.com/images/37.png (Photo that came out in Genzyme's 2006 Annual Report)!

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…

On Being Sick

It’s been a rough past couple of weeks. My cough has been really bothering me.

The past few days I had a legitimate cold. Legitimate being that it was an actual virus. My other coughs are mostly irritations of my nasal passages caused by the Bi-Pap machine which pauses mucus down my airways. When it gets through the airways, I really find it difficult to cough it out. Often times this is cured by just simply lying down and waiting for it to be pushed back up. I’ve developed a system wherein I just lay down on a flat surface, wait awhile, turn to my side and usually after that I am able to cough it out. But there are times wherein it gets really bad. Those are the times that make me think about life and what it really means…

We were on our back from our annual Holy Week break. While driving back from Cavite towards Manila, I suddenly developed cough caused by some secretions that got through my airways. I was riding in my dad’s car and the passenger seat couldn’t recline all the way back. At first I thought it was going to be ok, but it got worse. I was starting to cough more violently. I asked him if I could transfer to the van. We had brought 2 cars because of the amount of stuff we brought on the trip.

I wanted to transfer to the van because I could lay down flat on the back seat. The problem was, they couldn’t get my Bi-Pap machine working on the van. Time was running out. My cough was getting worse by the minute. I could fill the liquid filling up my air passages.

Luckily, we stopped just in front of a provincial hospital. I asked my dad if they could just take me into the emergency room of the hospital. They have an electrical outlet there and a bed where I can lay down. We made a dash for the E.R.

I was able to lay down on one of the beds. The coughing eased a bit but by this time too much liquid had built up inside my airways and lungs that I was still coughing even after 30 mins. I was still having trouble breathing.

At this particular moment, all I could really think of was that I didn’t want to die in that provincial hospital. Ok, I might have been over reacting. There was a good chance I would not die there. However, sometimes when you’re gasping for air and coughing violently and not being able to do anything about it, thoughts like this do pass through your mind.

Long story short, after about an hour, I just decided to have the doctor suction the fluid out. Not the most pleasant experience but it did get the fluid out quickly and we were able to continue our way back home.

I’ve been having these respiratory problems the past few weeks. It’s been tough. It’s made me think about mortality even more. That and all the experiences I’ve had the past year, plus the fact that I’m turning 30 this year made me really rethink my life.

We can’t really be sure how much time we have left in this world, I guess we just need to make the most of the time we have. It’s easier said than done. Sometimes, other things take over that prevent us from doing things that we want to do.

Life is hard. Moreso for people like me who suffer from Pompe or other diseases but we just need to bite the bullet and get on with our lives. Appreciate the things we have.

In my case, while life hard now and the future is uncertain, I’m happy I have my family here with me. I see them everyday, I get to spend time with them. Sometimes we get on each others nerves but at the end of the day, we’re still family and we love each other dearly. I’m thankful for my friends. Even if I don’t see them everyday I’m still thankful for their being in my life.

I’ve often thought what I’d do when I get strong enough and able to move my arms, body and legs better, there’s one thing that always comes to my mind, when I’m able to, I’d like to give all the people that matter in my life a warm hug, a kiss on the cheek and a simple thank you for being in my life and making it better.

The Big Three-Oh

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.

My Summer Look

We’re going on our annual Holy Week break. My family usually goes to a place near the beach where my mom’s side of the family usually get together.

It’s been really hot and humid here. I also have been irritated with my hair so with all those things combined, I decided to just cut it all off. So here’s my summer look. Goatee included.

!http://www.fightpompe.com/images/36.jpg!

I was trying to keep myself from laughing while taking this picture in front of the web cam. So if I look like a dork, well…

Maybe it’s temporary insanity. The goatee will probably get shaved after the break. As for the hair, it’s not the first time I cut it off, I’ll probably keep it till summer is over. Maybe longer is people like it. Hahahaha.

29th Infusion

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!