TBM Update #1

The first phase of the “big remodel” upon us. Originally, my mom was coming out on Wednesday evening and we were just going to stay in Denver that night as I have to be at the hospital nice and early Thursday morning. However, my dad thought mom should come out early to help me get ready, so I’m picking her up Tuesday evening. I’m not entirely sure what I’m supposed to do to “get ready,” so we took the day to play – a.k.a. shoe shopping! We also did some things around my house, but that’s not that fun to talk about. As for what phase one entails, Dr. Meguid, whose surgical record is quite impressive, will insert an upside-down-y shaped stint at the lower point of the trachea and going into the upper portions of both bronchi tubes. I should notice a difference in my breathing when I wake up. Dr. Meguid assured me that of all of the 12 – yes, I said 12 – of these tracheobronchoplasties he’s done he has never had one patient not feel a noticeable difference and relief in their breathing. Now, that is not to say that other doctors have not experienced patient who did not experience relief, but I’m determined to keep his 100% track record in tact!

You may still be scratching your head over why has this surgeon only done 12 of these procedures? The fact of the matter is that there are only a small number of hospitals across the country that even do this procedure and most thoracic surgeons in general will not touch it . Again, you may be asking yourself, but why is that? Well, Tracheobronchomalacia is such a rare, and extremely under-diagnosed, condition, that 1) there’s not a lot known about the condition or what causes, 2) it’s an extremely complicated, delicate, and invasive procedures, 3) very few hospitals across the country have the capability/equipment or trained doctors to diagnose TBM or the training needed to perform this type of surgery. So, the fact that my surgeon has only performed 12 tracheobronchoplasties doesn’t really bother me. He very confident in his competence without being the least bit arrogant. He was pretty direct, not hurried, thorough in his explanations of what was going to happen to me and ALL of the possible side effects, and detail-oriented, and pragmatic – and I liked that! Overall he was just very reassuring that I was a perfect candidate for this procedure and that I would eventually, after a lot of pain and intensive respiratory therapy, get back to full health and enjoying my life once again. Dr. Meguid was just that awesome! From my own research, and for those of you who know me well, know that I am an avid researcher – especially when it comes to my health, there’s really not a lot of information on TBM to be found. I have been reading articles in the Journal of Thoracic Medicine and did find those to be quite helpful with regards to the tracheobronchoplasty itself. Below I’ve included links to a couple of websites that give a pretty good overview of TBM as well. To be honest, these few resources have really been just about all I could find on TBM. I am lucky that I have the education and research training that I have because otherwise I wouldn’t have been able to tackle reading the journal articles at all, let alone walk away with an understanding of what I had read.

https://rarediseases.info.nih.gov/diseases/7791/tracheobronchomalacia

http://www.curetbm.org

Well, it’s 4:00 AM and we are off to Denver to the hospital. The nest time you hear from me I will have a stint in place and should be breathing a bit easier! Blessings to you all.