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Monday, September 28, 2009

Breathing Easy


When you have Duchenne's, you can never be sure when your condition will worsen and in what ways. For me, I have noticed a decline approximately every 5-7 years, whether it be nutritional, cardiac, skeletal, or respiratory. When I began using a ventilator following my tracheostomy in 2002, I was able to spend at least a few hours each day breathing on my own or "sprinting". It was very helpful for transfers, bathing, and using the bathroom. I knew there was a possiblity that at some point I would be become completely ventilator-dependent.

Well, a little more than 7 years later, I am quickly nearing that point. After as little as 20 minutes, I am noticeably working harder to breathe, and my CO2 level creeps over 50 (the normal range is between 35-45). This results in headache and fatigue. My heartrate and blood pressure also increase. Fortunately, once I return to the ventilator, everything improves within as little as 10 minutes.

Though I have always been against accepting more medicine or treatment unless it is absolutely warranted, sometimes it is necessary to lose the small battles in order to have a chance to win the big war. In the end, of course, you can never defeat DMD, but I want to muster all the force that I can. So if that means being dependent on a machine 24/7, then so be it. I still have things to do and places to go!

3 comments:

Lisa said...

Josh, I'm so proud of you. I'm so glad to see that you possess the same positive attitude, the same drive, the same bright spark inside you that I saw many years ago when I used to spend time with you at your house. It is genuinely inspiring to me. I've thought about you often over the years, and I wish I had stayed in touch. I'm gonna check out your book at my earliest opportunity. My entire family (dad, sister Rachel, mom) sends their best. Love, Lisa Gratz

L'Aussie said...

Very inspirational to hear feelings about this disease first hand. Good on you for doing what you can to maximise your opportunities. I have a son with Beckers, a milder form of Duchennes and he has a similar attitude.

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