Sweet Macbook Pro

Macbook Pro

Yeah I know that this really has nothing directly to do with Pompe. However I just wanted to write about this. Why? Well all of us need something to brighten their day, something to make us smile. It just so happens that Apple products, especially their mobile computers make me smile. I loooovvveeee Apple computers.

Apple recently began shipping the Macbook Pros in two variants. The entry level 1.83GHZ and the 2.0GHZ both featuring Intel Core Duo processors. The Macbook Pro is the first mobile computer from Apple that features an Intel processor. Signalling the transition from the PowerPC processor.

Right now this is my dream computer. I’m the happy owner of a 15″ Powerbook and I can’t wait to get my hands on a Macbook Pro. When? I honestly don’t know. Maybe never. Right now all my resources are channeled towards Fighting Pompe. So I honestly don’t know if I’ll ever be able to afford one. Well who knows, I might win the lottery. Till then, everyone is free to dream right?!?!?

Even if I don’t get to own one, seeing a Macbook Pro puts a smile on my face. In my situation wherein life is difficult as it is dealing with Pompe, every reason to smile is a welcome one.

18 Shirts Sold

It might not seem plenty but I’m quite happy that the “Fight Pompe Shirts”:http://www.cafepress.com/fightpompe I made found their way to several people. To date 18 shirts have been sold to several individuals.

I haven’t actively promoted the shirts to my friends and family because I wanted to see the test shirt first. Since these are made on demand, I wasn’t sure how it would look. I ordered my own test shirt and I got my hands on it a week ago. There were some delays before I got my shirt. My dad was supposed to bring it home since he was in the U.S. a month ago. It didn’t arrive on time and he left before the shirt could arrive at my uncle’s home. I had to wait for several weeks till a relative of my uncle went to the Philippines.

I finally got my hands on the shirt. It’s a nice shirt. I got the “Fight Pompe Ringer T”:http://www.cafepress.com/fightpompe.45169974. So far I only have 5 variants of the Fight Pompe shirt but I’m planning to add more as well as other items.

Thanks to all those who bought shirts to support Fight Pompe. I truly appreciate it. Any comments and suggestions are welcome. Leave me a message.

Fight Pompe!

Pompe Heroes

This post has been long over due. There are a lot of people that I’m grateful to with regards to the fight against Pompe. Among them are the patients and family who go the extra mile to fight for other Pompe patients. Often, spending their own time and resources in order to improve the lives of Pompe patients around the world.

Early this February several patients, family members and other members of the Pompe community trooped to the FDA to appeal to them for the approval of Myozyme. The AMDA had prepared a short video composed of several testimonies from patients appealing to the FDA to approve Myozyme for use of all patients.

The meeting between the Pompe delegation and the FDA lasted a little over an hour. The video was shown and the delegates were given time to express their own views. A question and answer also followed. I was told that as a whole it was a good meeting.

I was also flattered that one of the delegates, Tiffany who also happens to be a friend of mine wore the Fight Pompe shirt I made. She also read a short message from me towards the end of the meeting. I’m glad that she did that. In a way, it was my small contribution to the Fight.

There are a lot of people that are content to stand by the sidelines and let things be the way they are. Not these people, not these heroes. They actively participate in trying to make a difference in the lives of others for this I am grateful. I am heartened and hopeful of the future because there are people like these who continue to fight and make a difference.

Pompe Advocates at FDA Meeting

_from left to right Ross and J.R. Harvey, Marsha Zimmerman, Randall, Marylyn and Tiffany House_

Thank You

Ever since I started the fight against Pompe, a lot of people have been there to show their support. Of course it doesn’t have to be said that my family was there for me. My immediate family as well as my extended family.

My family knows I’ll forever be grateful to them. I’d like to take this chance though to thank some other people. Friends who’ve gone out of their way to help. In fact I would not have thought that some of these people would care so much. Not because I didn’t think they are caring people but simply because we aren’t that close. That being said, some people are just kind and generous that you don’t have to be that close for them to come to your aid. I thank God for these people.

I’d like to start by thanking fellow patients that have been there to support each other through this battle. Maryze and Tiffany two women I’ve known for some time, albeit only through email and chat. Still I feel really close to them having shared similar experiences. They are pillars in the fight against Pompe. These two have fought hard so other patients may have a better chance in beating this disease.

Recently I’ve got to know other patients a bit better through GSDnet and through this blog. J.R. and Joe are just two of those patients. We’ve exchanged emails and words of encouragement. Thanks guys.

A special thanks goes to Kevin. He was my former boss albeit for a short time. Even though we didn’t get a chance to get to know each other well enough in person, we kept in touch via email and instant messaging long after we parted ways professionally. Upon hearing the start of my treatment, he said he wanted to help. He shared in my belief that I should start putting health first and have work take a back seat. Rallying his friends and family, Kevin has now started a way of helping me out. Special thanks also goes out to Kevin’s family and friends. Kathryn, Art, Alex, Kim, DT and Connie are just some of these. God bless you guys.

It doesn’t have to be said that thanks goes to the wonderful doctors that I have. Drs. Estrada, Alcausin, Padilla, Silao, Gotiongko, Dr. Jorge are the fine team of doctors that care for me. They play a big part in keeping me healthy and alive.

Thanks to the people at Genzyme. Dra. Jimenez, Patrick, Jamie, Mark, Julie, MaryBeth, and the countless other people who work tirelessly to help create a treatment for Pompe.

These are just some of the people who make my world better. There are others to thank however they skip my mind right now. Charge that to my mental lapse due to it being 1 a.m. I will thank them next time.

Words can’t express the gratitude I feel. I am comforted with the thought that in this world of ours wherein much bad things have happened lately, there are people who still make this world a great place to live in. Silently they work their miracles in other people’s lives. Not wanting any recognition in return. Just the simple satisfaction that they’ve made a difference in someone’s life.

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!

Get Well Soon Mang Bert

We didn’t get much sleep last night. Our long time family driver, Mang Bert got sick. He had a severe case of hypoglycemia, brought about by diabetes.

It came as a surprise because it was the first time that it happened. Early during the day he already complained that he was feeling dizzy. He didn’t work that day and spent it resting. His blood pressure was high already. He was given medicine to help bring it down and for awhile it worked.

He was feeling better already during the day. Apparently it was just temporary.

While sleeping that night he suddenly had a seizure. Luckily one of my aides heard him moaning and rushed to where he was sleeping. He could see that he was already stiff and his jaw was locked. He called for help and woke us all up.

We called for an ambulance but being the state of our healthcare system that it is, the ambulance took 20 mins to get here.

Mang Bert was brought to the emergency room at a nearby hospital. He stayed there till morning. The doctors gave him an injection of glucose and that helped a lot. He was allowed to go home several hours after that.

He will need to see a doctor to assess his health again.

In our country there are trade-offs. Luckily labor is cheap here. Mang Bert has been working for our family for over 20 years. Heck, he is family. It’s sad this happened.

We’re praying for his speedy recovery. Get well soon Mang Bert.

Oh, for those who don’ t know, the word “Mang” is sort of a title that we give to an elderly gentleman as a sign of respect.

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.