Infusion Postponed

I suffered my first real setback since starting my Myozyme infusions. Last Sunday I was brought to the E.R. at around 6:30 p.m. I was having trouble coughing that afternoon. For some reason I couldn’t expel the phlegm in my lungs. I was able to do this the past few weeks with relative ease as compared to 6 months ago. I don’t know why it was harder that time. It came to a point where I was having trouble breathing already. I asked to be brought to the E.R. before it got worse. I wanted them to suction the phlegm out.

We arrived at the E.R. and got looked at by the attending doctors and nurses. I don’t know if it’s just because they rarely see cases like mine or maybe my situation wasn’t really that serious but they sure took awhile to start suction. They asked a lot of stuff first. All I really wanted was for them to suction it out since I couldn’t breathe. They eventually did and I felt better. I want to thank the nurse who suctioned it. She did a good job and was very warm and friendly.

The doctor asked for a blood test to rule out an infection. At first I didn’t want to because it was a normal occurance for me to get a bit of phlegm in the mornings. Usually after I cough it out, it’s over. To be on the safe side, they wanted to do it. Turns out that my segmenters were high, suggesting a bacterial infection. So they prescribed some antibiotics. I was sent home at close to 10 p.m. Yeah I stayed there for that long.

The next morning, my mom called my attending physician. The one who administers Myozyme to give her a briefing on what happened. She said that the protocols for the infusion stated that we had to control the infection first before continuing with it. So that was it. Infusion postponed. Simple as that. I didn’t want to argue since they’re only looking after what’s best for me.

I started my antibiotics Monday. That will last for 5 days. If after that period I feel better and my tests are ok, we continue with the infusions.

Please pray for me that I’ll be able to continue my infusions ASAP. I hate missing infusions. I hate being sick even more. Especially if it’s pulmonary related.

Looking Towards The Future

Like I mentioned on my previous post, my friend wrote an interesting insight about what Pompe patients now face. A chance for a longer and brighter future.

A lot if not most of Pompe patients were once faced with a bleak outlook regarding their future. Up until a few months ago, a treatment wasn’t available in the market. However things change. Now, Pompe patients have a new ray of hope, in the form of Myozyme.

While we’re not certain how well Myozyme can improve the quality of life of someone suffering from Pompe, signs indicate to at least some improvement. To a certain extent I think we can safely say that Pompe patients are better off with it than without.

Now we Pompe patients are faced suddenly with the fact that there might be a future. It’s great but there are things now to consider that we previously probably didn’t bother to think about.

First, how do we continue to fund our Enzyme Replacement Therapy. This will be a life long treatment until something better comes up (Gene Therapy anyone?). Second, finances. Some patients gave up on their career, work because they got weaker. Now that strength is slowly coming back, a career and work is a legitimate concern. Family, as you grow older, having someone to spend the rest of your life with would be great. Now some people might say this is unfair, why subject someone to a life with a partner with Pompe. Simple answer why not? If someone loves you and understands the pros and cons of spending their life with you give them the chance. It would be unfair to push them away. Of course this means a lot of patience and understanding from both sides. Retirement. With Myozyme giving us the prospect of living longer we need to worry about the same things “normal” people do. One of them is retirement. Thank God I’m still a long ways from that.

These are just some concerns that now face Pompe patients. Concerns that are normal for ordinary people but for us it’s something new. We need to deal with them as with most people. Life is indeed difficult but it’s definitely worth it.

Things I Want To Do In The Future

My friend Maryze and I were chatting the other day. I was going over an article she wrote for a Pompe magazine. As I was going through the content, one thing in particular caught my attention. Maryze wrote about how now that Myozyme is here, Pompe patients need to look towards a future and prepare for it more.

In the past Pompe patients were not really planning for a future since we had a great chance of not living to see it. But with Myozyme the future seems a bit better. So now the problem is we need to start preparing/planning and looking forward to the future.

I’ll be honest, I live my life one day at a time. While I’m hoping for a future I’m more worried about now, the present. But now that I’m undergoing ERT, I must admit I am looking at the future more. So with that in mind, I’m listing my dreams, things I want to do, places I want to visit, people I want to meet, etc.. I hope to be able to do all these things before I die, which hopefully will not be anytime soon. Oh, I’ll also be listing things I’ve already done. You’ll know what they are since they’re already crossed out.

These things are in no particular order. Doesn’t really matter which I do first as long as I get to do them…

* Visit the Holy Land
* Find the right person for me and get married
* Have kids
* Earn enough money to have a decent life for my family and I
* Visit Apple headquarters (1 Infinite Loop baby!)
* Go back to school and take up a Masters degree (I’ve been dreaming of attending the “Academy of Art”: I want to take their online courses since that would be a perfect set-up for me)
* Visit the “Ferrari factory”: in Maranello
* Watch an F1 race (hopefully while Schumacher is still racing)
* -Meet my biggest crush-
* -Ride a Ferrari-
* Guest on Oprah’s show to create awareness for Pompe
* -See and experience Fall (the season, I got to do this in NY last 2001)-
* Guest on Jay Leno, again to create awareness for Pompe
* Write a book
* Get an article published on Newsweek or Time
* Meet Steve Jobs
* Meet Michael Schumacher
* Make a difference with as much people as I can
* Help make the PSOD successful
* Make enough money so that I can support my mom and dad when they retire
* Walk again
* Swim again
* Ride a bike again
* Drive again (yes, before I was confined to a wheelchair I did manage to learn how to drive)
* Take great pictures (when I get my hands strong enough again, I’ll buy a DSLR)
* Visit Genzyme HQ in Boston and personally thank each and every employee for the great job they’re doing.

I have some other things but they’re escaping me right now. I’ll add to these in the future.

Hopefully when I revisit this article, I’ll be crossing out some of the things on this list.

Expression Of Hope

Hooray! I got my copy of the “Expression of Hope”: book. What is “Expression of Hope”: Good question. I took the liberty of lifting the description of it from the web site.

bq. Expression of Hope is a global program of goodwill and awareness featuring works of art by the community touched by the rare genetic conditions of lysosomal storage disorders. Selected artwork will be displayed at various events around the world where others in the community can view it. In addition, the majority of submissions will be posted on the web where they’ll be accessible to the broader community. The works of art are meant to express the subject’s feelings of hope and be an expression of the human spirit of the person living with an LSD.

About 6 months ago I was asked if I wanted to participate in the “Expression of Hope”: program. Naturally I said yes. I was assigned to collaborate with an artist from Boston. So I met “Sean Ackley”: through a conference call organized by Genzyme. We spoke for awhile and got each other’s contact information. We exchanged emails, chats in the days that followed. Sean and I were able to exchange ideas which he eventually used to develop the artwork he submitted. You can view the artwork “here”: it’s the photograph with the diary and pictures.

Sean took my words and wrote it in a diary. He then photographed the diary together with some pictures of mine. The result is the fantastic artwork he created. Ok, ok.. I’m a bit biased. But it’s honestly good, biases aside.

The “Expression of Hope”: is a great program that is trying to help create awareness for people with LSD but with a positive twist. It showcases the talents and the positive attitude of people suffering from LSDs. It’s a fantastic campaign and I hope that it does well.

The Fight Pompe illustration I also had May Ann commissioned is featured in the web site of “Expression of Hope”: So please do check out the web site, you can send e-cards of the artworks from the web site.

Let me know what you think.

16th Infusion

I have to seriously come up with better titles for my infusion entries..

Anyway, on with the details. It was my 16th infusion. Things pretty much went on along as they usually do. My dad wasn’t able to go with me though. He’s currently out of the country for work. So it was only my mom, aides and myself that went to the hospital.

Funny thing though… After all the media attention I got lately, some people at the hospital know me now. It’s kinda nice, weird, funny all rolled into one. The porter who took our things up to the hospital room knew who I was. He chatted with me and said he saw me on tv, etc… I was flattered. He said that he really waited up for the show when he saw the commercial promo for the show.

Thins pretty much went on the as they usually do. I’m really getting the hang of this. Much of the nervousness I experienced before is now gone. I still get jitters some time with certain things but for the most part I’m good. So much so that after the infusion, when the nurse was about to take out the I.V. line, I asked her if I could be the one to pull it out. That’s a first! I used to shut my eyes when they’d insert the needle. I couldn’t bear looking at it. That goes the same when they’d take it out. Now I’ve gotten so used to it already that for this infusion I was the one who pulled out the I.V. line afterwards.. Cool!

The whole infusion went well. No problems whatsoever. I was able to finish on time.

The highlight of this visit though was the fact that I was able to see the rehab doctor already. She gave me some things I need to do and had a P.T. go in and have me assesed. An O.T. also came in to measure my foot ang my left finger. I need some braces done for my foot ang my left finger to help prevent deformity. Due to muscle weakness my ankles are starting to deform. My left thumb is also getting worse. Hopefully the braces will prevent them from getting worse till the time I have enough muscle strength that I won’t be needing the braces anymore.

So all in all, this infusion went well.

Pinoy Bloggers Meet

_photo courtesy of Yugatech (Abe)_
_I’m in the photo somewhere…_

Pinoy (another term for Filipino) bloggers met up last night at “Italliani’s Greenbelt 2”: This dinner was organized by “Jayvee”: and Abe (Yuga) of “Yugatech”: fame.

It was a great night. I got the chance to meet and network with other Pinoy bloggers. We spoke, shared experiences with blogging. Most are just personal or amateur bloggers while some were ProBloggers making decent money out of it. I consider myself a semi-pro blogger. I blog through this site and through “The After Mac”: which is a blog owned by “B5 Media”: I make a tiny as in microscopic amount of money from “The After Mac”: since it’s not a popular blog.. yet.

I’m happy to have met fellow bloggers “Abe”:, “Markku”:, “Chris”:, “Anton”:, “Noel”:, “Angelo”:, “Ricky”:, “Gail”:, “Sasha”: as well as non-bloggers but connected to them, Anne and Trinny. I hope that this isn’t our last meeting. I’m looking forward to more.

Blast From The Past

One of the nice things that came out of my recent media exposure was the chance to get in touch with people I haven’t had contact with for years. Yesterday proved to be a day that as they say, when it rains it pours. I had a blast from the past.

As I started my day, I opened my email to check the latest messages that came it. It was a mix of the usual. Email from mailing lists, groups, family, friends with “spam”: thrown into the mix. I also got several messages that were left here in Fight Pompe.

One of those messages came from Ronnie. He was my physical therapist from waaayyy back. 10 years ago I think. I’ve always liked Ronnie since he was one of the very few therapists I’ve had that was really able to motivate me to exercise. He always pushed me to do as much as I can. I appreciate that.

He wrote to me saying that he was watching TV with his family. They were tuned in to “TFC”: when the news feature about me was shown. He told his wife that he knew me. He then left me a message on my blog. Ronnie is now in the U.S. and I’m really happy to hear that he’s doing well. He now has a family, a good job and from what it seems a better life. It’s nice to know that he’s doing well.

I was having a dinner meeting with some other Filipino Bloggers when I received a phone call. It was from Jun Jun, a classmate from gradeschool who I have lost touch with since we graduated from gradeschool. I was really pleasantly surprised. Since I’ve often thought about what happened to my classmates and friends from years back. I was glad to hear from him. Unfortunately, I was still in a meeting and I told him I’d call him back. I did and we had a good few minutes catching up on our lives. He’s now married with kids. Doing well with work it seems and I think life is treating him well.

On a much lesser scale, I met up with some friends that I haven’t seen in awhile. I went to visit my friend at his house. Some of our other friends also went there. Over pizza, chips, corn dogs, barbeque and some beer (I didn’t drink though!), we talked the night away. Catching up, having a few laughs and just having a great time.

It’s nights like this that really make me feel that life is good. It doesn’t seem much but I was really happy. I’ve reconnected with some people I’ve missed, caught up with friends that I haven’t seen in awhile and just had an awesome time.

A Soldier’s Prayer

I got this from “Bernadette’s Blog”: it’s a written by an anonymous soldier during the first World War.

Here is goes..

I asked God for strength, that i might achieve,
I was made weak, that I might learn to humbly obey.

I asked for health, that I might do greater things,
I was given infirmity, that I might do better better things…

I asked for riches, that I might be happy,
I was given poverty, that I might be wise…

I asked for power, that I might have the praise of men,
I was given weakness, taht I might feel the need for God…

I asked for all things, that I might enjoy life,
I was given life, that I might enjoy all things…

I got nothing that I hoped for– but everything that I had hoped for,
Almost despite myfelt, my unspoken prayers were answered.

I am, among all men, most richly blessed!

I loved the prayer simply because it echoes most of my thoughts about my life. It rings true. God made me weak so that I may learn to be humble. I was given Pompe’s disease that I may go on to achieve things that I would not have if I was normal. I was given weakness so that I may learn to turn to God and know he’s beside me. I got nothing that I hoped for and yet everything that I needed and more. I’m truly blessed.

That’s not just lip service. I truly feel that my life is blessed. So far I’ve been lucky. A loving family, friends, education, some comfort in life. God has truly blessed me.

Now this Soldier’s Prayer will now also be a Fighter’s Prayer.

Valerie Jones

A few minutes after the live interview on Mornings@ANC aired someone called our house wanting to get in touch with us regarding Pompe. It was Valerie Jones. I wasn’t home but my mom was and they spoke about it for a long time.

My mom got her email address but apparently she wrote it down incorrectly. Thus her thank you email to Valerie bounced back. Now we don’t have a way of contacting Valerie and I would really like to get in touch with her. She’s a physical therapist and is working with other patients suffering from Pompe.

Valerie, if by any chance you’re reading this or anyone who knows you is reading this, please do leave me a message her as how I can contact you. Alternatively you can give us a call again and this time I’ll make sure to get your contact details right. I’d really love to get in touch with you.

Mornings @ ANC and TV Patrol

So yesterday was quite a day for me. I woke at some time between 5 and 5:30 a.m. Why? I was scheduled to guest in ANC’s new show Mornings @ ANC.

“Nina”: asked me if I could guest on their new show. I said yes of course. I asked if we could talk about “PSOD”: I wanted to promote PSOD if I was going to guest on their show. Of course she graciously said yes.

So there I was early in the morning, getting ready to take the trip to ABS-CBN. I left the house at 8 a.m. thinking that traffic would be terrible. The call time was at 9 and I didn’t want to be late. There was no traffic. I was there at 8:15 a.m. Well better early than late. I killed time in the car till 8:45 a.m.

We made our way to Studio 6 of ABS-CBN. On the way there I bumped into “Bernadette Sembrano”: She and I were acquaintances so she said hi. We chatted for awhile asking each other how we are. She walked me to the studio. She said she’d also write about me so we exchanged numbers. She left afterwards.

I went inside Studio 6 to look for “Nina”: Man, it was cold in there.. Good thing I wore an undershirt. Otherwise I would have been frozen stiff. After a few mins, she came in. We exchanged hellos. We chatted for awhile since the segment was still a good 20 to 30 mins away.

Game time came.. We sat on the set. Mics placed and cues given. We’d be going live in a few seconds. The interview came and it went ok. Questions asked were pretty much standard. What’s Pompe, Family, etc.. Questions I’ve answered numerous times before. We also spoke about “PSOD”: that was the more important aspect of the interview.

A funny thing happened though. Nina asked me (not exact words, only as how I remembered it) “They said you might only live till the age of 30, how come you still feel so blessed?”. I replied “Let’s put it simply, I’m here right now on ANC, being interviewed by a pretty lady, how can I not feel blessed?”. Ha Ha Ha.

It might sound funny, my cousin even told me I was so slick.. Honestly I just wanted to put it in simple terms. Really, that’s how I feel. How can I not feel blessed when I was given a chance to go on T.V. to promote a worthy cause, add to that it was a pretty lady that was asking the questions. It’s all good!

In life it’s the simple things that make it interesting. I know what happened was a simple thing, trivial to some but to me I appreciate experiences like that very much. It makes life fun. It’s things like this that you appreciate when faced with a situation like mine.

After the interview, Nina, gave me a tour of ABS-CBN’s news room. It was fantastic. I got to meet people that I’ve wanted to meet, such as Maria Resa, Chari Villa, Julius Babao, etc.. I like the news and it was fun to meet the people I watch every day. I especially loved meeting Maria for the simple fact that I admire her work very much. I’ve watched her since the time she was on CNN and I liked her work. So that was definitely a treat.

To make things more interesting. Yesterday was also the same day that they decided to air the feature on TV patrol. So in a way I got a lot of media mileage that day. Ha Ha Ha.

Thanks to the people who watched. The ones who sent SMS messages and left comments here on my blog. I really appreciate it.

Oh one more thing, Bernadette (another pretty lady) decide to drop by that day. We had a good chat and got to know each other better. I’d like to think we’re not just acquaintances now but friends.