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Thursday, October 26, 2006

And the Beat Goes On...

Paid a visit to my cardiologist today. In heart failure when I started seeing him four years ago, I'm doing a whole lot better today. My condition remains serious -- that's why I have a pacemaker/defibrillator implanted in my chest -- but I consider myself fortunate to be in the position I am.

My checkup went so well that we were able to shift the focus to the doctor and his wizardry (or lack thereof) with the new computer equipment in the office. It's a good thing he has a better understanding of how the heart works, because I certainly wouldn't ask him to show me how to navigate the internet!

Thanks, doctor, for making everything possible in my life...

Friday, October 20, 2006

Coming Down the Homestretch

I completed the next to the last chapter of my book late last night. It covers the period from about ages 5 to 10. Events described include standing up to a school bully, serving as a local poster child for the Muscular Dystrophy Association (MDA), and going to MDA overnight camp for the first time. I could tell you more, but then you wouldn't read the book!

As for the final chapter, I have a few ideas knocking around my head, so hopefully it will happen quickly. But after making and breaking several deadlines, I'm making no bold predictions this time.

Stay tuned...

Wednesday, October 18, 2006

Fire and Rain (A Lot of Rain)

I saw James Taylor perform last night at the Tower Theater in Upper Darby. My father introduced me to Taylor's music at a young age, and I've been a fan ever since. In 2005, I often listened to his soothing music while recovering from pacemaker surgery, a very emotional time for me.

But with the monsoon-like weather outside, it could not have been a worse night to venture out. When my parents and I arrived, I desperately needed to have my trach suctioned. However, we first had to figure out how to assemble my new suction machine. (If you're wondering why I didn't think of that beforehand, don't worry; I've already heard that one!) Then, I nearly got killed by a car as I crossed 69th Street!

Fortunately, James Taylor didn't disappoint, performing favorites like the aforementioned "Fire and Rain", "Carolina In My Mind ", and "Sweet Baby James". So while it was a bit of an adventure getting there, the concert was well worth the effort.

Thursday, October 12, 2006

Like a Fish out of Water

With the headset for my environmental control unit (ECU) in the shop for repairs the past two days, I have felt helpless. The voice-activated ECU -- which makes it possible for me to answer and dial the telephone, control my stereo, TV, VCR and DVD player, operate my hospital-style bed, and even page my nurses when they are not in the same room with me -- has become a vital part of my life.

While it is true that I have a nurse with me all day who could certainly help me answer the telephone, for example, there is nothing like being able to do things for myself. Before purchasing the ECU, I never realized how great that felt. But after owning the system for more than a year, I had come to take it for granted.

Having lost much of my independence as my disease has progressed over the years, it's important for me to maintain as much of it as possible. That's what makes the ECU so wonderful.

I should have the repaired headset back by Saturday (overnight shipping is a godsend) and then all will be well. That is, until the first time I tell the system to change the channel on the TV and it answers the phone instead. Then, things could get nasty!

Thursday, October 05, 2006

Out with the Old, In with the New

I had the my feeding tube changed today in the Interventional Radiology (IR) department at Children's Hospital of Philadelphia (CHOP)*. Through the feeding tube, also called a g-tube -- "g" is short for gastrostomy -- I receive medicines and liquid nutrition similar to Ensure. Normally, the 4 cm long tube (pictured above by itself on the left and in my abdomen on the right with a gauze pad against my skin) could be changed at home, but because I have what is known as a "false tract", the new tube tends to end up in that tract instead of in the stomach (not good). So every three months, I go the hospital, where a wire is inserted through the old tube while still in my stomach. The balloon holding the tube in place is deflated using a syringe and the tube is pulled out. The new tube is then slid over the wire and its balloon inflated. To confirm placement, an x-ray of the stomach is taken while a contrast dye is injected through the g-tube.

Piece of cake? You try having someone yank something out of your stomach sometime! Not only that, but getting on the table is complicated by the fact that my knees are contracted and I cannot keep my hips from flopping out to the side. I need restraint ties and several towels and pillows to safely position me. I bring my Hoyer lift from home because it's the safest way to move me. But it does not reach the level of the table, so some careful maneuvering is required!

It's not exactly my idea of fun, but with the help of my nurse and the considerate IR staff (thanks guys -- you're the best!), I get through everything just fine. As for the discomfort from the tube change, it's relatively mild and is usually gone within a day or so.

*You may be wondering why I still go to a pediatric hospital at age 28. The reality is that until fairly recently, few Duchenne's patients reached adulthood. That's obviously changed, but the best clinic remains at CHOP, so doctors, nurses, and other staff are familiar with the disease.

Wednesday, October 04, 2006

May the Force Be with Him

I'd like to take a moment to wish the best of luck to Frank, my nurse for the past three years (pictured with me today, outside the Philadelphia Museum of Art), as he moves on to a new job. Winheld's World won't be the same without the big guy with a penchant for fly-fishing, football, and twisted humor. Dedicated and reliable as a nurse, he was (and still is!) the kind of guy to go with to ballgames, movies, and on roadtrips.

Filling his shoes won't be easy, but a couple of promising candidates will give it a shot. There will be a necessary period of adjustment for me, but it's nothing I haven't been through before. As Frank himself reminded me, it even took me a while to "break" him in!

Thanks for everything, man!