PSOD Launch

!/images/18.jpg (PSOD Launch)!

Last Monday saw a realization of a dream. The Philippine Society for Orphan Disorders was launched. A culmination of several doctors, parents and patients desire to form an organization to help support people with orphan disorders.

Orphan disorders are diseases that are very rare. Due to the rarity much help, resources and research are not put into these disorders. Thus “orpahaning them” Pompe is an orphan disorders since it affects only 10,000 people in the world. At least reported cases.

The PSOD was launched at the Makati Shangrila, Quezon B Function room last Monday, June 26, 2006. A simple lunch was served. A program was also presented. The first board and officers of the organization was inducted. My mom is the founding president which makes it all the more special.

Plaques of appreciation were also awarded to people and companies who have helped PSOD and patients even though the organization was not formally in place yet.

Recepients of the awards were Genzyme, Mead Johnson, PGH, to name a few. A plaque was also awarded to my aunt and her new husband for using their wedding as a vehicle to raise funds for PSOD. Instead of gifts they requested guests to give donations to PSOD. Thanks to their kindness the PSOD was able to raise the start-up capital that it needed to get things going.

Genzyme holds a special place in my heart as they are the ones manufacturing and providing Myozyme.

I gave a short speech representing the patients that the PSOD will be helping. It’s a short speech but I think was ok. You can “download a copy of my speech”:http://www.fightpompe.com/file_download/1 here.

Photos of the event can be viewed at “my flickr account”:http://www.flickr.com/photos/71239953@N00/sets/72157594180313174/.

A Night At St. Lukes

I had to spend a night at St. Lukes. Believe me, after 6 months of going to the hospital every other week, St. Lukes was the last place I wanted to be in. However, the doctor felt otherwise.

It started when I woke up Tuesday morning with the left side of my head feeling numb. It usually happens when I sleep in a bad position. The blood flow is restricted and thus my head goes numb. Normally once I change positions the numbness goes away. I thought it was just another episode. So I went along my daily routine.

I noticed that something was wrong when I was taking a shower. My head was still numb. That was a full 30 mins or so from the time I woke up. I started worrying. I finished my shower, got dressed and even started to work. My head was still numb. That’s not normal…

To make matters worse, I was having diarrhea the night before and it continued Tuesday.

By lunchtime the numbness was still there. I decided to call my dad. He came home and checked how I was doing. He then suggested that I go to the E.R. I agreed with him. This was starting to get worriesome.

I got to the E.R. around 4 p.m. I couldn’t leave the house earlier than 3 because my stomach was still bad. It took an hour to get to the hospital due to terrible traffic.

My E.R. experience was different this time though. From the last time that I was in bed the whole time, this instance I was feeling ok and I sat through the whole time. A notable thing too was the fact that when they drew blood I was sitting down as well. Prior to this everytime they’d draw blood I would lie down because I’d get dizzy. Not this time though. I was fine.

The neuorologist’s fellow saw me first. Did some preliminary tests to check if the numbness had something to do with the nerves or something like that. Apparently it didn’t. At least she thought so. When the neurologist came, she also had the same conclusion but she said I should stay overnight for observation. I protested but they insisted. The doctors won.

I spent the night in St. Lukes. Needless to say it was one of the most expensive but boring nights I’ve had so far…. The only consolation is that I’m ok. I woke up the next morning feeling better. The numbness was gone. The doctor concluded that it must have been muscle spasm or a pinched nerve that caused the numbness.

I also saw my pulmonologist while I was there. He’s looking at my most recent x-rays. He said from first glance everything seems ok. Not perfect but nothing to worry about. He’ll have to compare it to the previous one though.

Oh well.. Better safe than sorry I guess..

Thanks To All Those Who Sent Me Messages

A heartfelt thanks to all those people who took the time out to leave messages on my blog. I’ve been receiving a whole lot of them ever since Nina’s article came out and since the Pipol episode aired last Tuesday, well Wednesday early morning to be exact.

I’ve received messages from India, Kuwait, L.A. and some other places. I’m really touched and flattered that all those people cared enough to look for my blog and read through it. I’m happy because my campaign to create awareness for Pompe is slowly taking flight.

To all those who sent messages, I’m trying my best to reply to them. Please forgive me if my reply is late or if it still hasn’t arrived. Rest assured I read through all of them and value your thoughts, words and prayers. Many thanks and God Bless.

Save Christine

I wouldn’t feel right if I passed up the chance to at least post, point out and try in my own little way to help out someone else. Why? Because a lot of people have helped me, so it’s time to pay it forward.

Fil-Am Christine Pechera is suffering from non-Hodgkin’s lymphoma and is in urgent need of a bone marrow transplant. Right now she doesn’t have a match in the donor registry. She’s making an appeal for people to register as a bone marrow donor. Hopefully by some miracle she finds a match. If you’re a filipino residing in the U.S. you can be a donor.

Check out “Christine’s personal video appeal”:http://www.youtube.com/watch?v=kaK84LhbCQc&eurl=http%3A%2F%2Fchristine%2Esite%2Eph%2F%5Fmgxroot%2Fpage%5F10763%2Ehtml or check out the web site “www.savechristine.com”:http://www.savechristine.com maybe you’re the match she’s waiting for. The details are there. Check it out, now.. run..

Thanks For Visiting Bambi.. Again..

I’m really lucky to have friends like Bambi. She’s my most frequent visitor at the hospital. It’s good that her work takes her to PGH as well. So she really takes the time out to drop by everytime she’s there.

It’s always fun to have her around. Laughter is always present. Conversation always light. It’s a good thing because with her there in the room, my mind is away from my treatment thus ensuring that I remain calm…

Thanks Bambi! I really appreciate it.

Pipol

Well thanks to “Nina”:http://ninascoops.blogspot.com again, I’ll be featured on Pipol. To be honest, I don’t really like attention but this is for creating awareness for Pompe so I wanted to do it.

It’s really important to create awareness. Especially for such a rare disease. If you get to watch it tonight, thanks. If not, try to catch the replay. It will be aired on ANC. Saturday or Sunday I think.

The Results Are In…

My test results are in. I have to undergo a battery of tests every 6 months. So I had a complete bloodwork done, chest x-ray, 2D Echo, ECG, Urinalysis and a Hearing test. Whew.. That was a lot.

I was a bit worried at first but after showing it to my doctor she eased my fears by pointing out that some of the results were expected but not worse than before. It actually got better.

The most notable of the test results were my CPK MB levels. With Pompe patients this marker is high. A high level of CPK MB means there’s muscle damage. When I started ERT my levels were 10 points higher than normal. On my third month it was only 2 points higher and now on my 6th month of treatment, they’re normal already. Hooray!

As for the others, my creatinine is low, magnesium is a tad high and the SGOT level is high. The low creatinine is nothing to worry about my doctor said. It’s probably because I’m under weight. It would be bad if it was high. As for the magnesium it’s just a tad high so nothing really to be bothered about. As for the SGOT, although it’s high, it’s lower than the previous one. So there’s progress

Chest x-ray is almost the same although she said that I should go see the pulmonologist just to be sure. Same with the 2D echo and ECG, we will consult the cardio.

So far things are looking ok. I do need to put on weight though… I really do.

14th Infusion

I just finished my 14th infusion and on my 6th month of ERT. A milestone.

The infusion went fairly well. A big change though is that one of my usual doctors was on leave. Leaving the lead Dr. by herself. Although she had a new fellow coming in, the fellow didn’t participate much as she had to attend to other patients.

I was touched because the doctor on leave called up to check on me. She said that she was used to seeing me every other tuesday so she decided to call and check how I’m doing. See that’s one of the things I’m really thankful for. I’m working with great people. Not just great doctors but great human beings as well.

As each infusion goes it’s getting harder to find a vein to stick the I.V. in. Some veins can’t be used anymore. Although I’m not worried there’s still a lot to stick the needles in. It’s just that it won’t be on my hands anymore. It took three tries today to get the I.V. in.

The infusion itself went smoothly. Not untoward incidents and I was able to leave the hospital a bit early.

So nothing much to write about the infusion…

Happy Father’s Day

To my dad, happy happy father’s day. You’ve always been, always will be my hero. Whatever I’ve become today I owe in part to you. You’ve always been there to support me. You never lost faith and hope in me. You’re the greatest dad on earth.

To all my uncle’s and cousins who are dads, happy father’s day to you too! You’re also great dads. I guess I’m really lucky to be a part of this family. I have a lot of role models to look up to, if and when I get to be one.

40th Day

We celebrated the 40th day of my Lolo (grandfather) yesterday. Well it didn’t exactly fall on the 40th day since his death but due to schedules and stuff we had to celebrate yesterday.

We brought his ashes togther with my Lola’s (grandmother) ashes to Lipa, Batangas. That’s my Lolo’s home town and it was his request to be laid to rest there.

A few weeks back we had my Lola’s body taken out from her grave and cremated. It was part of my Lolo’s wish that both of them be brought to Lipa, where they can be laid to rest together.

Family and some close friends gathered at Floral Gardens Cemetery to commemorate the event. It was a solemn ceremony. Afterwards afternoon snacks were served at a function room at the MVL building.

I haven’t been to Lipa in quite some time. Things have changed. A lot more buildings and people. It’s not the town I remembered it to be.

How things change as time passes by.