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Saturday, May 17, 2008

Oh Canada! Part 3

It was a good thing that I arrived a few minutes early for my talk today at the American Thoracic Society conference because as I was sitting there outside of the room with my parents, one of the doctors suddenly burst through the doors and told me, "You're on!" Apparently, he was having some technical issues with his presentation, so the stage was now mine.

As I drove up the aisle toward the front of the room, all eyes were on me. I hoped I was driving straight, as I am still learning how to drive this new chair of mine! At the podium was my pulmonologist, who was introducing me. As I got closer to the front of the room, I saw my neurologist sitting in the audience. And when I got to the front of the room, I saw my former pulmonologist, who had saved my life by ordering my trach almost six years ago. I had not seen him in a few years, as he had moved to another city.

Then it was showtime. As my doctor held the microphone for me, I took the audience through a PowerPoint presentation containing pictures of me at various points in my life. Time was limited, so I had to be to the point, which actually helped me get into a rhythm. At the end of my presentation, I wanted to make a few medical points. After all, this particular course was about respiratory considerations in neuromuscular disorders (and I certainly have one). This was my opportunity to deliver a message to the doctors, respiratory therapists, and others in the audience.

I told them that it is important to never forget that patients are unique. Before I got my trach, I was under the assumption that at some point, in order to keep living, everyone with DMD got a trach. I have now learned that this is far from the case. There are men with DMD much older than I am who use non-invasive ventilation and have for years. On the other hand, there are doctors who will tell you that no one with DMD should have a trach. This is the wrong approach, in my opinion.

I also got into some of the social issues that may dictate treatment plans. When I got my trach, one of the benefits was that I qualified for nursing care for 16 hours a day. At that point, I was pretty much unable to physically do anything for myself. If I had my trach removed now, I would only qualify for attendant care. There's nothing wrong with that, but I could not get more than a few hours a day.

Then I took some interesting questions from the audience. It was pretty cool that people had to step up to microphone to ask me questions! I brought down the house when a doctor asked me for any advice I would give him about caring for patients like me. "Well, first, buy my book..." I told him.

I was also asked about my ability to speak so well and I told the story about how it only took me 10 minutes to start talking after my trach surgery. There's no shutting me up!

After a quick lunch with my doctors, I decided to do a little more sightseeing, visiting the Hockey Hall of Fame, only a few blocks from my hotel. I was happy to see plenty of Philadelphia Flyers memorabilia. My parents and I posed for a picture with the Stanley Cup. Hey, the Flyers may not get to take a picture with the Cup any time soon, but at least I did!

Later in the evening, my parents, nurse, and I got together with my former pulmonologist and his family. I presented him with a personally autographed copy of my book, which was an emotional moment for me. I had been through so much with this doctor. He had never given up on me even when I was in bad shape, and thanks to him, I was able to write my book.

Then, it was time for dinner. We had, of all things, Tex-Mex! In Canada? Well, it certainly didn't stop me! I figured, I'm going home tomorrow, so I might as well pack it in because I probably won't have time for any big meals tomorrow while we're on the road.

Enjoy the slideshow. Talk to you when I get back to Philly...


Kathie said...

So now you are an international celebrity!
Well done, Josh, well done…

Lori said...

Once again, I am so impressed by your willingness to speak out to help MD patients and their families. Now you're a Canadian superstar!

I agree that every patient is different, but I just want to add one advantage of getting a trach earlier rather than later that my family and my brother certainly did not realize until we were faced with an emergent situation. In my brother's particular case, the positive pressure ventilation through nose plugs worked well for him for many years. However, none of us were prepared for the fact that it made it nearly impossible for him to be given anesthesia if he ever needed surgery. When he broke his leg last year and needed surgery, the anesthesiologists were not able to put a tube down his throat to administer anesthesia because he could not open his jaw very far, therefore, we had to make a very difficult decision. They could try to give anesthesia through nose tubes, which is apparently a very difficult procedure (b/c of the undetermined amount of time he would've been off his machine as they attempted to insert the tubes). With the nose tubes, there was a chance that he'd have to have an emergency tracheostomy. Our other option was for him to undergo a planned tracheostomy. We decided on the latter because he was so nervous about being off of his machine for any length of time. If he had already had a trach, the anesthesia would've been a cinch to administer and perhaps he would still be with us. In addition, if he had had a peg tube earlier in life, then I am confident that he would have had better nutrition and some things would've been much easier for him. For one, he would've been in much better shape for the surgery. As it happened, he was given a trach for the surgery, but at this stage, his trachea was not strong enough to accommodate it.

But, truly, one never knows what would've happened. Maybe it would've been easier, but maybe not. It is very difficult to predict, but for people with MD and their families who are faced with a difficult decision about whether to get a trach or to use positive pressure ventilation through nose plugs, I just want to offer our experience as food for thought. Regardless of whether or not a patient and his family decide to use a trach, I feel strongly that, in my brother's case, he would have benefited from having a peg tub inserted as a teenager.

Again, I am no medical professional. I certainly do not know what it is like to rely on machines for my every breath and I do not know how I would feel or what I would want if it were me who had to make the decision for myself. I can only offer my observations of one MD patient in an effort (hopefully) to help one other person or family who may find themselves in similar circumstances.

Thank you, Josh, for reaching out to so many people. I wish I had known you a long, long time ago!