The Journey Begins

Monday, Dec 19th 2005

I was anticipating that Monday would be the start of my very monumental journey towards turning the Fight vs. Pompe for the better. I did not expect though that this is how it would turn out.

As of the prior weekend the release of the enzyme was still in limbo. The freight forwarders that were handling the importation of the medicine said that the papers were still being processed. My mom called their office and ask what we could do to speed things up. They said that they’ll try their best and to call them up on Monday for an update.

Ok, back to Monday. My mom called the freight forwarder Monday morning to follow up on the release of the enzyme. This time they said that they’re committing to delivering the enzyme at 5 p.m. that afternoon. They were confident that they could deliver. Enough to promise a guarantee. My mom called the hospital that same morning to check if there was a room available already. The hospital said that they were holding a room for us but we needed to check in by 2:00 p.m.

Upon hearing the good news my mom came into my room and excitedly told me that I needed to get ready. We needed to get to the hospital before 2:00 p.m. Now for someone like me, it takes quite awhile to get ready. So i tried to hurry things up as much as I can with the help of my aide. I finished taking a bath, dressing up and packing at around 11:00 a.m. We needed to leave the house no later than 12:30 p.m. I had an hour and a half to kill so I spent that time preparing some stuff at work as well as sending a few emails.

We left at 12:30 on the dot. The trip to the hospital was a relatively quick one. We got to the hospital at around 1:30 p.m. My mom and dad went down ahead to see if everything was in order.

PGH, the hospital where the infusion was to take place at is a public hospital. As such we weren’t very oriented on how things were done. Since we were accustomed to going to a private hospital near our home. Public hospitals here in the Philippines are really severely under funded and over booked/worked. PGH is not exempted to that, even if it is the biggest public hospital in our country. I’ll reserve my observations about the hospital for a different time.

We were doing this at PGH because this is where the UP National Institute of Human Genetics is connected. They are the ones who are leading the research and treatment for Genetic disorders here in the Philippines.

Dr. Sylvia Estrada met my parents at the admission section of the hospital and assisted them in the arrangements for my stay. Luckily there was a “pay ward” or a private wing of the hospital wherein patients can get private rooms. We got a room at that wing of the hospital.

By 2:30 p.m I was already checked-in and was in the hospital room together with my parents. The actual infusion was going to be done on Tuesday morning but we decided to go a day before just to make sure we had allowance for additional tests if necessary. True enough we needed to do one last blood test. The pulmonologist on the team wanted an ABG test done to be sure that my blood gas levels were acceptable prior to the start of the treatment.

We spend Monday afternoon and evening at the hospital room. I had several guests that afternoon and early evening. Some people from my dad’s office who also happened to be at PGH stopped by. My uncle also came early evening to wish me well since he could not make it on the day of the infusion.

Tuesday, Dec 20 2005

At somewhere around 2 or 3 in the morning the phone rang in my hospital room. Someone called and asked if he could speak to the relatives of the dead. It was my aide who answered the phone but told me about it. I thought, “What the?!?!” Was this a sign of things to come? That added to my already anxious and nervous state. I didn’t get to sleep that much during the night. Thinking about what was going to happen in several hours as well as the occasional monitoring done by the nurses.

By 6:00 am I was getting ready for the infusion since we were scheduled to start the infusion at around 8 a.m. However we got into a slight delay. I won’t elaborate on it anymore since I’d like to focus more on the positive aspect of the day. Suffice to say we were able to get back on track at around 10 to 11 a.m.

My friend, who’s a professional photographer came by to take pictures of the infusion although he had to leave at around 11 a.m. since he had to go back to the office. He wasn’t able to take pictures of the actual infusion since he only got time off for a few hours and because of the delay, he ran out of time.

In hindsight everything was for the best. Some of the important people in my life were able to make for the start of the infusion. My grandmother came in the nick of time at around 12 noon.

By 1 p.m. we were good to go. The I.V. needle was stuck in my arm already and the enzyme was connected to the infusion pump. We started the infusion with a prayer led by my aunt. I specifically asked that we say a prayer before we started. After the prayer I said a simple thank you to my family, doctors and friends who came to share the monumental experience with me. After a few words, my mom ceremoniously pushed the start button on the infusion pump. After the enzyme started dripping the room was filled with cheers, tears and expressions of happiness. The room was also drowned by the sound of “Hallelujah from Messiah” by G.F. Handel. My mom also brought some balloons to make the occasion a bit livelier.

The whole infusion took around 4 hours. The lead doctor and her assistant stayed in the room to monitor my progress throughout the infusion. Apart from the initial elevation of my blood pressure everything else was fine. I attribute this to nervousness.

By 5 p.m. we were done. All that was left to do was observe me overnight and see if I have any reactions to the enzyme. The doctors weren’t expecting anything to happen. They said, they were more worried with the next few infusions since the body has had the chance to create anti-bodies.

I slept relatively well that night sans the occasional interruption by the night duty nurse to take my blood pressure and check other vital signs.

Wednesday, Dec 21, 2005

I woke up at around 6:30 a.m. raring to go home. As much as I’m happy that we’ve started the infusion I couldn’t wait to go home. Several days without my Powerbook and the internet was starting to get to me. I was restless already and wanted to go back to the comforts of my own home.

Some of the doctors came by over the next few hours to give me a final check-up before processing my discharge orders. My dad and mom arrived around 9 a.m. along with my dad’s good friend who flew all the way from Indonesia just to visit and wish me well. We spent the morning chatting and killing time since the hospital could only fix our discharge papers at 11 a.m.

By 12 noon we were out of the hospital and on the way back home.


The above is a condensed account of my experience. Some of the details I intentionally left out. One because I’m still a bit tired and two I’d like to keep some of them private for personal and other reasons.

I thank God the whole thing went well. I thank my family for the continuous support they’ve given and continue to give me. It’s hard for them
emotionally, physically and financially but they don’t complain. I’d like to thank the great team of doctors who made this possible, my friends for the prayers and support and Genzyme for giving me a chance to improve my life.

I’m taking this experience one step at a time. I don’t know how the treatment will affect me. All I can do is try my best and see how it turns out. In the end it’s really all about giving it a go.

This is just the beginning.

Fight Pompe!

Poising For A Photo Finish

Tuesday is D-Day or more appropriately “The-Day”. It’s our targetted date for the Myozyme infusion. Unfortunately it seems like we’re poised for a photo finish. As of Friday afternoon, the Myozyme was still at customs waiting to be released. The papers for the Myozyme’s tax exemption is still being completed. God, it’s been two weeks if I’m not mistaken since the Myozyme arrived here in the Philippines. Sometimes I really wonder how our government gets anything done.. They’re so inefficient and unorganized… or plainly corrupt. Of course I don’t speak for all. There are great and honest people working for government. That’s why I’m still hoping and praying that the Myozyme gets released on time.

If everything goes as planned, I check in the hospital monday afternoon or late evening. Spend the night there and have the infusion first thing in the morning. Some good points to note, I don’t need any additional tests. The ones I got almost a month ago are ok already. We have an all systems go.

My mom is very excited. While it might seem that I’m not from the outside, I am. Although because of the disappointments I’ve gone through in my life, I always take things with caution. I’m trying not to get overly excited as not to get disappointed if things don’t go as planned. I do know that it will happen if God wants it to happen. I just need to be patient.

Well I’m keeping my fingers, toes, eyes and everything that I can crossed. Here’s hoping we make it on Tuesday.

Fight Pompe!

Look Ma’ I Got A New Car

Well… not a real one! But a great one nevertheless. In more ways it’s better than the real thing.

I got home last monday feeling a bit bad. I was tired from a visit to the doctors office. For some reason I wasn’t really feeling well. I get tired easily these days. Upon arriving home, I opened my email to check for new messages. I got an email from a Dr. friend. The message read “This morning my sister delivered to your apartment a package. It is from the 3 of us…” referring to some colleagues of her. I asked the people at home if there was a package for me. There was!

I received a gift with a card. I opened the card and the message went something like.. “We couldn’t afford to give you the real thing…” I then went on to open the gift… Inside was a Ferrari F430 diecase model by Hot Wheels. Wow!

There are two material things that I’m passionate about, Ferrari and Apple Computers. I collect Ferrari model cars since I can’t afford the real thing. Not that I have a huge collection. I think I have 5 or 6 but I do love’em.

I was really touched by the gift. In fact I think the model car is indeed better than the real thing. Why? At a local cost of somewhere around 17 million pesos or a little over 300,000 dollars that money is best used for something else. Like getting medicine for sick people. Even if I had that much money I’d probably settle for a simpler car and just use the money for something else.

Don’t get me wrong I love Ferrari’s in fact I’ve even fulfilled my dream this year to ride one but I don’t think I’ll ever own one.

So in many ways the model car is just perfect. Plus it’s really the thought that counts. I asked my Dr. friend who she found out I like Ferrari’s. She mentioned that on a visit to my house, I mentioned in passing that I liked Ferrari. She never forgot. Awww…… Sniff.. sniff..

Why is this related to Pompe? Well she works with the company making the ERT. Plus more than that, it was because of Pompe that I got a chance to meet her and her colleagues. I’ve gotten to meet a lot of great people because of Pompe. For that I am blessed.

Fight Pompe!

A Little Bit About Myself

Part of creating awareness for Pompe disease is getting to know the actual people suffering from it such as myself. I feel that if I only present clinical facts, symptoms or whatnots it wouldn’t really make that much of an impact on people. So with your indulgence, allow me to share a bit of myself. Get the know the human side of a Pompe patient. In time I will also try to get some other patients to share a part of their lives with you. But it has to start with me. As the saying goes.. “lead by example”.

My name is Juan B.K. Magdaraog. Most of my friends and family call me by my nickname Dickoy. Don’t ask me why my parents named me that. I did however get used to over the years. It’s a funny sounding name but a memorable one nonetheless since it’s not so common.

I’m a full time creative director for a small company called Sparkplug Studios that I, together with my brother and some friends own. I started out as a web/graphic designer before wearing the creative director hat. But since we’re a very small company I still do web and graphic work at the same time.

You must wonder why a creative director/designer uses Blogger for his blog.. Well putting simply I just didn’t have time to design and implement a custom blog. I wanted to get this project started. In time I’ll move this blog to my server and implement a custom design. For now this will suffice.

Do I love what I do now? Well I learned to love it. It wasn’t what I had in mind when I was a child. I wanted to become an architect or a lawyer. But since Pompe disease placed me in a unique situation, I had to shift to things I can physically do.

Technology has allowed me to work in a virtual world wherein physical strength while it still plays a role can be circumvented by technology. Through the use of computers , I am able to be productive in ways that I would have never thought possible.

Apart from my day job I am a sometimes writer… Meaning I write sometimes… 🙂 Every now and then I get a chance to write for a local publication called mph (mobile philippines). A gadget oriented magazine catering to the local market. I also had a chance to write for a book called Reflections From A Different Journery. I’m happy to have the chance to write. I can’t say I’m a particularly good writer. I write because I have something to say. Whether or not it turns out to be eloquent, well that’s another story.

Apart from the above mentioned one of my bigger passions is being a “ThisAbility” advocate. ThisAbility is a term I coined up to put a positive spin on having a disability. I’ll go into more detail about ThisAbility. Suffice to say that this is something I wish I could do on a full time basis. Unfortunately one has to earn a living. If I win the lottery, you can be assured that this is something I’ll do full time. Being a ThisAbility advocate means going around and talking to people about the positive side of having a disability. Explaining to people that even if a person has a disability, he/she can still be productive and live a meaningful life. It’s basically anchored on the principle of looking at the brighter side of life. The power of positive thinking.

I’m also like your average 20 something guy. I like going out with friends, although it’s becoming increasingly rare these days. I like movies, music and watching tv. I love all things Apple. I simply adore my Powerbook. I also love Ferrari. I love the cars, I love the formula 1 team. Two people I’d like to meet is Steve Jobs and Michael Schumacher.

I like girls… Pretty girls always have an effect on me.. Then again they have that effect on most guys…

I only have one dream that I would die for.. That’s to have a family of my own. I grew up in a very loving and caring family. I’ve seen how it is to have people around you who love you unconditionally. That’s something I eventually want to have. But if life has something else planned for me I’d have to accept that.

Well… that’s all I can think of now.. If you want to know anything more.. drop me a comment and I’ll try to answer your questions as much as possible.

Thanks for stopping by. Fight Pompe!

Fight Pompe

I’m trying to leverage blogging technology to create awareness for a very rare disease that I together with roughly 10,000 registered cases around the world suffer from. Call it an experiment of sorts. Please digg it.
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Reflections From A Different Journey

One of the best things that happened to me as an indirect result of having Pompe’s disease was the chance to draw upon my experience and put it into writing. What makes it even better is that I got to write for a book.

On March 2004, “Reflections From A Different Journey: What Adults With Disabilities Wish All Parents Knew” was released in the market. A book spearheaded by Stan Klein and John Kemp and published by McGraw-Hill. The book is a collection of 40 essays written by adults who grew up with disability. With topics ranging from love and acceptance all the way to sexuality, the book is a good resource for parents who are raising children with disability. The aim of this book is to share lessons and life experiences of adults who already went through growing up with disability, in hopes that the parents can learn something and apply it to their own experience.

I’m really fortunate to have been a part of the book. It can about unexpectedly. I was one day going over an email from a mailing list I subscribed to. In that email was a call for submission of articles for the book. I decided to give it a go and that same day I sat for 30 mins and composed the article. It may seem like a short time to write an article but it’s a subject I know by heart. So putting down my thoughts into writting did not take much time. I submitted the article the same day.

I got a reply from Stan Klein a few days later saying that he received the article and was going to review it. The deadline for submissions was still months ahead so he said that it will take some time before they can decide if the article will be included.

I forgot all about the article till months after when I received an email again from Stan. I almost deleted his email because I didn’t recognize his name. Something inside myself prodded me to read the email. It was a good thing I did. Stan wrote a message of congratulations for having been chosen as one of the 40 essays included in the book. I was floored. Not only was it a great honor to be included in the book but it was also one of my dreams to have an essay published in a book.

I’ve always believed that we are put in this world to make a difference. No matter who we are and what we do, we can make a difference. Maybe not a big one but a difference nonetheless. One way I thought I could make a difference is by sharing my experiences with others in hopes that they may learn from it. Writing is a good way of doing so.

With this essay in the book, I’ve started to share my experiences with others as I’m doing with this blog. If it helps one person and improves his outlook about life, then I’d have done my job.

There’s a link on the sidebar of this blog that will direct you to amazon, if you can please do get a copy of the book. It’s a great read with lots of lessons not only for people with disability and their parents but for all. Most of the stories convery lessons that can be applied to everyone’s lives. It will also help support people such as Stan Klein and John Kemp produce more books for people with disabilies. You can also visit Stan’s site and get the book there. Either way you’re helping support a good cause.

Till next time… Fight Pompe!