Category: Others

!http://www.fightpompe.com/images/41.jpg (Adam’s Family)!

The Christian world welcomes one of its newest members, baby Adam!

Adam is the son of my cousin Melvin and his wife Farah. Born on Nov. 3, 2007, Adam is the second child of the couple. Ashley, the eldest child is a proud big sister.

I was really flattered when Melvin and Farah asked me to be the God Father of Adam. Melvin and I grew up together and were really close when we were kids. We’re almost the same age with just a little less than 6 months separating us.

Being a God Parent is something that shouldn’t be taken lightly. I know I can’t give much in terms of monetary or financial support as of now but I’m quite confident that I can be a good example to Adam as he grows up.

I’m not sure if I’ll ever have kids so I’m at least happy I have several God children. Although I feel bad because some of them I have not seen for awhile. I hope to see them soon.

So, to Adam, welcome to the Christian world. I promise to do the best I can to be a good role model for you. I look forward to seeing you grow up to be a great man.

So my heart rate problem has finally been solved. I think… From the tests we did (2D Echo and ECG), there seemed to be nothing wrong with my heart. So my doctors looked into other causes of my rapid heart rate. The most obvious reason was my BiPap settings. It might not be adequate for me already and I’m not able to expel carbon dioxide enough. The build up of carbon dioxide can lead to increased heart rates.

The doctors had us adjust the settings. After some tweaking, we finally got a setting that seemed to work. The downside was I got soe gas and nausea for the next few days. But I slept better and my heart rate slowed down.

On hindsight and upon asking other Pompe patients, it was more obvious that it was the machine settings.

I’ve been getting headaches when I wake up. I would also wake up in the middle of the night and find myself breathing rapidly. It also came to a point that when I would wake up in the middle of the night I would have to sit up for a few minutes to feel better.

Other patients felt this and all of them said that it was caused by BiPap settings that needed to be adjusted.

So I hope that’s all there is to it. Wish me luck.

It was around 6 a.m. when I woke up to turn in bed. I can turn partly but not all the way and I need to ask someone to help me. I tried to call my aide when I suddenly felt my heart starting to race. I started to panic. It’s a good thing that my mobile phone was beside me. I dialed my parents room and asked them to come to my room.

They found me with my heart racing and pounding so strong that when you put your hand on my chest you’d really feel the beats. It was racing so fast I honestly thought that it was the limit. My heart would not go any faster. I was scared that it would stop.

My mom held my hand and asked me to try and relax. As the minutes passed by my heart rate started to drop. In around 3 mins it was almost back to normal. Whew! That was quite a scare. I spent most of the day in bed resting.

We spoke to the doctor treating me with Myozyme and we also tried to call my physician but he was out of the country. It could not have been Myozyme related because it was almost 2 weeks since I had my dose. It should have been out of my system already.

After a whole day of resting I was feeling much better. Well enough in fact to go out. I still managed to go about with my plans for that weekend.

We scheduled an appointment with a cardiologist the following Monday. It was just right before checking into the hospital for the Myozyme infusion. I wanted to get an all clear from a cardio before getting the infusion.

The cardio listened to my heart and had an ECG done. She said that my heart seemed fine. The rhythm was good however it was still slightly elevated. She asked if I was taking any caffeine, I told her I drank coffee in the morning and iced tea during the day. She told me to stop it until we figure out what’s wrong.

She cleared me for my infusions and so I got my Myozyme the following day. The infusion went without a hitch and I was home at our scheduled time.

In my opinion it could be several things. First could be cause not getting enough oxygen while sleeping. The settings of my machine might not be right for me anymore. The next would be the caffeine, however I did not take that much caffeine. The doctor said that my metabolism might be changing and that I could be more sensitive to caffeine now. The third would be that the Mitral Valve Prolapse I have is getting worse. Among all three I really hope it’s not the third.

A 2D Echo before we started Myozyme showed that I have Mitral Valve Prolapse but the cardio that looked at it said that it was insignificant. The efficiency of my heart was still good. In fact in a 2D Echo done 6 months after it showed that the efficiency improved.

My gut instinct tells me it’s the machine settings. To be on the safe side though, I’ll be getting the 2D Echo done again. If it’s the heart I’m thinking it should happen when I’m awake as well. It happens when I’m asleep or just woken up. So I’m really thinking it’s the machine setting.

A part of me is really scared to find out. Dealing with Pompe is hard enough and I don’t think I can deal with another disease. Not at this time at least. So I’m really hoping nothing serious is wrong with me.

I’ve put two “Ivan Acuña”:http://www.ivanacuna.com paintings I have for sale. I got these as payment for services rendered from the artist himself. I would have liked to keep one of them but due to my current problems, I’m putting them both up for sale to raise funds.

These are abstract paintings that are perfect for interior decoration. In fact one of them is actually on my office wall but I need to part with it.

I was supposed to use the proceeds to fund my sabbatical from work to focus on physical therapy but given my current BiPap woes, I’ll use the proceeds for that.

The details are:

Painting 01
Size: 4.5 x 3.5 ft

Painting 02
Size: 4.5 x 4.5 ft

If you know anyone who’s interested I’d appreciate it. You can leave me a message here as to how I can contact you or the interested buyer. You can also email me at juan@sparkplug-studios.com

Here are thumbnails of the paintings. Click on them to see the bigger picture.

As the saying goes “Sometimes you’re up, sometimes you’re down”, life is like a wheel, you can’t always be on top of the world. This week saw that happening to me. While I can’t really say that I’m down on the gutter, the week hasn’t gone my way.

I will be skipping my session this Tuesday. I got an SMS message from my doctor saying the Myozyme hasn’t arrived. They still have yet to receive word when it will be coming. It’s quite frustrating given the recent progress I’ve been making. But that’s life and sometimes things don’t go your way. It’s out of my hands so there’s nothing really I can do about it.

I missed several events that I wanted to attend to this week. First was our “Liga Grafica”:http://www.ligagrafica.com meeting. We hardly have meetings so when one was scheduled last Wednesday I really wanted to make it. Being Ash Wednesday I went to mass first before going to the meeting. However upon reaching the mall where our meeting was being held, my machine acted up (we figured out later it’s probably the car and not the machine’s fault) and I started coughing. That being said, I had to turn back and head home. It wasn’t worth the risk.

I wanted to attend a cooking demo, setup by my brother’s girlfriend last Saturday. I actually reached a bit further. I managed to make it to the place. After a few mins my cough started to act up again. I had to go home. It became worse when I got home. I couldn’t breathe and felt my lungs very heavy. I was on the verge of going to the emergency room. Good thing by that evening it got better. Coughing and respiratory problems are the scariest for me. Just a few minutes of not being able to breathe will kill you for sure.

We weren’t also able to attend the wake of the mother-in-law of Tita (aunt) Babes. That was a sad thing since Tita Babes and her husband has done so much for me. My mom and I really wanted to go but my mom decided to stay home as well since I wasn’t feeling good.

It’s time’s and events like this that get me down. It’s because I’m missing so much.

On the flip side, life can’t always be like this. Sometimes you’re up… I’m looking forward to getting back up.

Two of my friends, Gabe and JC thought about forming a group, they decided to include me and thus GeekChorus was formed. It’s a group that in so little words, wants to make Geekiness Cool or socially accepted. Meaning, it’s fun and cool to do smart things. Having a good time doesn’t have to equal booze, drugs, excessive partying, etc.. I’d like to think about it as being the Anti-Paris Hilton so to speak.

Anyway, last Feb 14, 2007 GeekChorus staged its first event called LOVE IS EVOL. It was a valentine’s party for single folks. Ok, those with partners are also welcome…

The event featured a live acoustic performance by Gabe’s old band “Da Pulis”. Lomomanila was also there for a Lomo Wall Installation. A reading of breakup letters rounded up the event.

It turned out to be a great event and managed to even raise money for “PSOD”:http://www.psod.org.ph.

I felt bad, I couldn’t make the event. I had come from the hospital the day before and was feeling tired that day. Plus it was the only day I could do the interview with “HappySlip”:http://www.happyslip.com.

Check out the “Love is Evol Page”:http://www.geekchorus.org/?page_id=6 here.

I’m quite happy every time someone takes interest in Pompe disease. It simply means that more people are aware of it now. The more people that are aware, the more chances that patients can be helped.

Bertalan Meskó is the owner and author of “Science Roll”. A personal blog chronicling his journey as a medical student. He’s focusing on genetics.

He posted “a great article”:http://scienceroll.com/2007/02/06/pompe-disease-a-rare-but-important-genetic-condition/ on Pompe disease that helps explain it in a little more understandable way for us laymen.

Here’s a quote from his post.

bq. Why do we have to talk about Pompe? The reason is diagnostic delay. The diagnosis often poses a dilemma due to the rarity of the disease, the variable rates of progression and the unspecific phenotypic features. What kind of disorders do we have to list as a part of the differential diagnosis?