Take a Deep Breath
I did a lot of that today at my visit to the pulmonologist today at The Children's Hospital of Philadelphia (CHOP). Pictured (from left) are Dr. Howard Panitch, my pulmonologist, and Dr. Jason Caboot, one of the pulmonary fellows. Though I was feeling less than energetic, the results of my pulmonary function tests (PFTs) were not as bad as I thought they would be, and were similar to my June results. One thing I've been noticing in recent years is that with Duchenne's, we're all still learning. Doctors are now realizing that there are no hard and fast rules for treating this disease, as my pulmonologist explained. While some doctors feel that guys with DMD should eventually have tracheostomies, others believe that no one with DMD should have them and should instead receive non-invasive ventilation. Not necessarily so, Dr. Panitch said. Patient preference, among other factors, is now an important consideration. He went on to tell me about a guy in his mid-20s with DMD who opted to have his trach removed, and began using his ventilator through a sip attachment during the day and a mask at night.
Could I do that? Again, it's an individual thing. I believe that I was in such poor shape that I needed the trach when I got it. Even today, though, my cardiac status might make the trach a better option because I could exert myself less. Without a trach, on the other hand, I could be more independent, able to stay by myself for periods of time. Still, I do need assistance, and I would not qualify for enough help if I didn't have a trach, which entitles me to 16 hours of nursing care a day. I also wouldn't be able to talk as well without my trach because I'd need to take breaths from the vent through my mouth and wouldn't be able to directly suction secretions from my trachea if I had a cold.
It was a busy day, as I also had an appointment in CHOP's neuromuscular clinic, where I saw my neurologist as well as a nutritionist, geneticist, physical therapist, and social worker -- all while being observed and interviewed by a reporter and a videographer for The New York Times for a piece on DMD (Stay tuned). Camera or not, though, I was my usual funny self. When the nutritionist talked about the "textbook" way of doing something, I told her that I had "lost the textbook" and was not "planning on finding it anytime soon!" After all, just because it was a long day didn't mean I was about to lose my sense of humor.
3 comments:
I love reading your blog. Your honesty and wit make it a pleasure to read. It is so wonderful that you are working with the NY Times on that article. You are going to be helping so many families see possibilities that they didn't know they had for their children. I cannot wait to read it! I will definitely be sharing it with several people I know.
I recently got my trach inserted, after 19 years of DMD. It was a bit too early if you ask me, but completely necessary. I've been finding it really hard to talk, because I'm used to talking in normal, long sentences without breaks. Do you have to do this too, or is it just me?
Hi Anonymous,
Welcome to the wonderful world of trachs! Certainly not a club that anyone would choose to belong to, but hopefully you will find in time that it's not as big of a deal as you might have imagined.
It's hard for me to completely answer your question because you did not say if you are using a ventilator. When my ventilator is connected, I can speak better than I had before getting the trach. Off of the ventilator, I can only speak when I have a Passy-Muir valve attached to the end of my trach. Then, it is much harder for me to speak in complete sentences.
I do know, however, that some people take some time to get used to speaking with a trach. They need to work on timing things just right. So, don't give up hope just yet. Make sure you talk to your doctor and he or she may be able to direct you to other medical professionals who deal with speech issues such as yours. Good luck!
Josh
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