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Meet Lorie!

My TBM Journey..So Far

The first time I remember having to deal with my breathing was about 10 years ago, 2013. I went to the ER as I couldn’t catch my breath or walk very far without having to stop, cough, calm myself down. I was given a nebulizer treatment and while I did feel better momentarily, nothing much changed. My friends put up with me with my barking cough, I was unable to join on some outings, leaning over to deal with a litter box was enough to make me almost pass out and walking to the trash bin caused me to be unable to breath for a few minutes. I went to pulmonologists, an ENT my general practicioner…they shrugged their shoulders and kindly walked me out the door. In 2019 I finally saw a pulmonologist who sent me for a dynamic CT scan. He had just read a paper written by Drs. Gangadharan and Majid. He showed me the results and then some photos of TBM online. They matched! I wasn’t crazy! There was actually a reason I was so diminished. I am lucky that I live in the Boston area and was able to get an appointment with Drs. Gangadharan and Majid.

I went through the series of testing, pulmonary function tests (PFT), dynamic CT and stent trial. Walking out of the hospital the night the stents were put in, I could breathe! I had over 90% collapses in both bronchi and trachea. I was cleared for surgery and able to have robotic surgery. This was in April of 2020. I was scheduled and then rescheduled a few times due to the pandemic but finally had surgery in July 2020. While still in the hospital, Dr. G told me the area above surgery was “floppy” and he was unable to reach it at that time. More on that in a bit. My recovery from surgery was undramatic. My breathing was so much better and I was able to do a lot more.

About a year and a half ago as of this writing, I noticed the coughing getting worse, running out of breath talking and leaning over being difficult. The center of the coughing was not as low as the first but higher up if that makes sense. I was due for a check in and brought all this up. At that point, Adam had been added to the practice and wow, what a difference! I again went through all the testing and yes, the area that was floppy before had degraded into a collapse that was able to be fixed. It’s called a Cervical Tracheal Resection and Reconstruction. It’s sort of a rare bonus! The incision is made where the collar bones meet. I had to stay in the hospital for a week with Guardian Stitches, 2 stitches connecting my head to my chest to keep me from moving my head inappropriately while initial healing began.

A few weeks after I got home, I began to literally not be able to breathe. I was gasping for air. I went to get a CT and I swear it was the hardest walk I’ve ever done. Apparently I had developed scar tissue that needed to be dealt with. It was done with a bronchoscopy. Dr. Majid was so kind and reassuring as I was truly scared. He was only able to remove some as the healing was still fresh so had another bronchoscopy a few months later to finalize.

I know this is very long, but I guess the moral of the story is..keep at it, advocate for yourself and try to see a group of doctors who know about TBM and are trained to deal with it. Jennifer Champy and the group who advocate for us have made such an amazing impact for all of us. I am so grateful. We are not crazy. The seemingly random symptoms matter. It’s a long journey that I’m not convinced ever truly ends but is managed. All doctors need to be educated!

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