PSOD Partners with Ayala Foundation USA

!http://www.fightpompe.com/images/40.png (Ayala Foundation USA Logo)!

I’m very happy to say that the “PSOD”:http://www.psod.org.ph has started its partnership with “Ayala Foundation USA”:http://www.af-usa.org/. The “Ayala Foundation USA”:http://www.af-usa.org/ has graciously allowed us to use their facilities and resources to accept donations from people in the United States.

Donations sent to the “PSOD”:http://www.psod.org.ph via the “Ayala Foundation USA”:http://www.af-usa.org/ is tax deductible.

The “PSOD”:http://www.psod.org.ph is the organization we help put up to assist People with rare disorders here in the Philippines. Our country has very limited resources and people with rare disorders have no access to these limited resources. We’re looking to change that.

Everyone has a right to live. It doesn’t meant that if you’re afflicted with a rare disorder that you have less rights to medical treatments and resources. Unfortunately most resources are put to diseases that are more common. There’s nothing wrong with that. But there’s also nothing wrong with helping people who are in the minority.

If you’re residing in the United States and want to help the “PSOD”:http://www.psod.org.ph out, please donate via the “Ayala Foundation USA”:http://www.af-usa.org/. Please specify that the money you’re giving is for the “PSOD”:http://www.psod.org.ph. The money you’ll be giving will be put into an endowment fund that will help fund our programs for the years to come.

Thank you in advance.

Links to AFUSA
“Donor Page”:http://www.af-usa.org/be_a_donor.asp
“Projects page where PSOD is listed”:http://www.af-usa.org/projects.asp

33rd Infusion

This will be a quick post. My 33rd infusion went well… No hitches, nothing really out of the ordinary. That’s pretty much it. Why is this short? Well… It’s been a month since my 33rd infusion. I had to skip a session because my aides got sick and I didn’t have anyone to go with me to the hospital. I also didn’t want to risk their health by forcing them to go.

The downside is, my 34th infusion will be the last one with Dr. Lani. It’s sad, I spent a year and a half with her. Almost every other Tuesday, we’d spend most of it together during the infusion. In that period I got to know her well.

I’ll save my thoughts on this matter for another post. I’m going for my 34th infusion in a few hours. Wish me luck.

Early Morning Scare Update

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.

Early Morning Scare

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.