Thursday, April 14, 2011

Slightly Pissed Off

I'm sure everyone has had something piss them off for no real reason at all. This happened to me about 25-30 minutes ago. One of the aides on my floor was helping me with some repositioning. When she was repositioning my lap tray, which I use my mouse on, we were having difficulty getting my hand just right. I was getting frustrated, which got her frustrated. When she said she could only gives me 2 more minutes because she had to help put other people to bed, I lost my cool. I said I'm tired of always being the one who has to wait and that I was going to report it. When she left my room, I shouted that this hospital is a joke and no better than a nursing home. Then I hit my buzzer because I needed a suction. The respiratory therapist asked me what I wanted and I told her what I needed. She told me to hold on because another patient's ventilator alarm was going off and she had to check. I got miffed because two nurses were in the hallway doing narcotics count, which I know is very important. However, does that somehow exclude them from the responsibility of checking on a patient when their ventilator is alarming?

I can't tell you how many times I've needed a suction quite badly only to be told I had to wait because the nurses were either doing report or narcotics count. Am I mistaken of is breathing not a priority any longer?



Wednesday, April 13, 2011


My introduction to any sort assisted ventilation came when I was around 14 or 15. I was waking in the morning with horrible headaches and was rather tired. An ABG or Arterial Blood Gas revealed that I was retaining Co2 because my breathing was being comprised by DMD. My Pulmonary doctor prescribed the use of what was know as a Pulmo-Wrap. It wasn't the most comfortable thing because the air blowing into it wasn't very warm. It was also quite loud as it was basically a vacuum cleaner motor that powered it.

I noticed a big difference in my breathing right away. The headaches were gone and I felt more energetic. Once I became accustomed to it, the noise wasn't so bad, but being cold remained an issue that was never really resolved. It just felt so good to be properly ventilated that I didn't worry about being cold. I did well with the Pulmo-Wrap for about 4 years.

Around the age of 17 or 18, my Co2 levels were beginning to climb again. This time I ended up in a behemoth of machine know as an Iron Lung. It was far more comfortable than the Pulmo-Wrap. It wasn't as loud and the air wasn't cold. As DMD continued its relentless attack on my respiratory system, I was in the Iron Lung 18+ hours a day and using oxygen when I was out of it and up in my wheelchair.

After 3 or 4 years of being a virtual prisoner in the Iron Lung, I got fed up with it and told myself that there had to be something better. Something I hadn't considered or didn't know about. There was. It was a tracheotomy and using a ventilator.

I knew nothing about any of this until having a heart to heart conversation with my doctor. At the end of that conversation, I was sold on the idea. However, before my doctor was okay with my decision, I visited some patients who were on ventilator at the very hospital where I have resided for nearly 21 years. They were all up and about on portable ventilators enjoy life. That's all I needed to see to know it was the right decision for me.

So, in January of 1990, I became a ventilator user. It was a decision I have never regretted. I don't recommend that the younger people with DMD who are having difficulty breathing run out and get a tracheotomy and go on a ventilator. Yes, it is certainly an option to consider when the time is right. With the current level of technology, there are several Non-Invasive Ventilation (NIV) out there. Dr. R. John Bach is a M.D. that many people have consulted regarding NIV and have been very successful.

Although I personally don't agree on his philosophy "No DMD person should ever require a trach tube or develop any respiratory complications. If people follclosely what we describe here, respiratory difficulties can be eliminated." I world be irresponsible for not mentioning him in this blog entry.

Take the time to weigh every option carefully and decide what is best for you. In the long run, it's what works well for you. I strongly urge parents of children with DMD to explain everything and allow them to be a part of this important decision. Don't force anything on them because they are the ones directly impacted by this.



Tuesday, April 12, 2011

Blogging More Often

I created this blog with the intention of sharing my experiences living with DMD. I have done that to some extent, but I have so much more that I should be sharing. It's not always easy to know what to write about. I have become so accustomed to the relative monotony of my life that I don't feel I have anything useful to say, but many people have said that I have a lot to offer. Being among the older guys with DMD, I should be sharing my experiences with the younger people with DMD as well as their families and loved ones. I'm sure that those that DMD doesn't affect would find what I have to share. So, I'm going to do my best to blog on a regular basis. Even if I don't really have much to say, something is definitely better than nothing. In my upcoming blog entries, I plan on writing about what it's been like living in a rehab hospital and growling up with DMD. I'll still write about other things as well. I hope those that read my blog will find continue to find it interesting and informative.