AMDA Teleconference: Pompe Patient Open Forum

I was lucky enough today to have had the chance to participate in the “AMDA”: Teleconference. The AMDA sponsors teleconference from time to time. Tackling various topics such as nutrition, exercise, gene therapy, insurance, respiratory complications and a lot more. Today’s topic was an open forum among patients.

I’ve wanted to participate in the “teleconference”: for a long time. However, living in the Philippines it meant that I had to make an overseas call. The usual time for a teleconference is about an hour. That would mean a lot of money. So I held off participating.

Oh but the wonders of technology has made it possible for me to participate today. I borrowed my friend’s VOIP phone. A VOIP phone allows you to make a call through the internet as opposed to the traditional phone line. My friend got a plan with unlimited minutes. All you need is a broadband connection and you just plug in the VOIP phone and there you go. Instant U.S. number. You can call any number in the U.S. and they can call you as well. You get a U.S. number with your VOIP phone.

The patient open forum proved to be a wonderful experience. Up until today I’ve only known patients through the GSDnet, an online mailing list for Pompe and other Glycogen Storage diseases. For the first time I heard the voices of other Pompe patients, family members and/or care givers. I’m happy to have finally heard and talked to Tiffany. We’ve been chatting for quite some time now but it’s the first time we’ve spoken to each other. I jokingly told her that it was nice to hear her distinct Texas accent. “Hey Ya’ll” or something like that.

A wide range of topics and concerns were discussed. From Bi-pap machines, respiratory concerns, Myozyme experiences, etc.. It was truly nice to hear other patient experiences. No matter how much people read, research about Pompe it’s still different hearing experiences from other people who are going through what you’re going through. There’s a kinship that is formed.

So to Tiffany, Marsha, Brian, Alicia, Ron and the other patients (sorry I couldn’t remember all the names, blame it on poor memory) it was great talking to you guys and sharing stories with you. I look forward to meeting all of you in person one day.

20th Infusion

I had my 20th infusion last September 26. Yes, the big “Two Oh”. I can’t believe it’s a little over 9 months since I first started on Myozyme. How time flies by so quickly.

The night before still started out a bit bad. Like the previous session I had come to the hospital again with a cough. It always develops on the ride to the hospital. I figure it’s because the phlegm gets rocked in my lungs and gets loose on the ride there. Honestly, that’s just my speculation. I don’t really know what happens. It just does.

They had to bring me in with a stretcher again. Every time I’d sit up the phlegm goes down to my lungs and I can’t seem to expell it out. So lying down helps ease the coughing.

I got to my room. The unlucky room 731. I drank some medicine, turned sideways and waited till I could cough out the phlegm. It eventually came out. Thank God.

The rest of the night was uneventful. Except for the ECG test that I had to do. It’s been 9 months and every 3 months they do some tests to see if I’ve made any progress. The ECG is one of those tests.

I woke up on infusion day (Tuesday). I had to get my weight before having breakfast. I’m happy to note that I gained weight. Prior to this I’ve been losing weight the past few weeks. I really think it was because of the food supplement I was taking. I switched to Ensure Plus two weeks prior. I gained 2.5 kilos because of it. Whoa!!! 2 weeks before I weighed a measly 39.5 kilos. I’m now at 42 kilos. I hope my weight gain continues.

I ate breakfast after. I didn’t get my usual breakfast which was pancakes and sausage from McDonalds. Instead I got Tapa(some kind of beef jerky) from Jollibee. I just wanted to try something new today. Needless to say I’ll be going back to my regular staple next time. Didn’t like the Tapa much..

This time I was lucky. Inserting the I.V. line was a one-shot deal. The resident did a great job. It’s better since they were able to use the same line to draw blood from me. I needed to get some bloodwork as part of the tests.

The infusion went well.. Till the time that the pulse oximeter that we were using sparked and caught fire. Not a big one though. Just enough to make the room smell awful. The nurse saw it at once and pulled the plug out of the socket. That got my heart racing. I forgot to mention that the night before, the refrigirator sparked as well. It must have been the wiring of the room.

A doctor whom I haven’t seen in a long time dropped by. Dr. Lynn came by together with my regular doctor. It was great seeing Dr. Lynn again. She’s been an instrumental part of my getting Myozyme and it was good to finally get to see her again. The room was filled with chatter. Catching up and other conversations. My mom was there as well as she’s always with me during infusions. Stories were exchanged, laughter filled the room and it was just basically a pleasant afternoon.

We finished at around 3:30 in the afternoon. I had lunch after. I usually don’t take anything during infusions. Only water. I just don’t want anything to interfere with infusions so if I can avoid it I don’t take anything in.

All in all the 20th infusion went well. I’m really now used to this that every infusion is as uneventful as the last. I hope it continues to be this way.