I’ve had asthma all my life, but in 2013 I caught the flu and pneumonia; everything seemed to suddenly be different. I just could not recover. I kept telling my pulmonary doctor that this just felt different somehow and after being on steroids for months I was no better. I ended up switching pulmonary doctors because this one that I had been seeing for 10 years was being totally dismissive and uncaring. My new pulmonary doctor immediately admitted me to the hospital for more tests and found that I was having severe oxygenation problems and started treating me as best he could.
I had gained about 30 pounds so of course he blamed it on the weight gain and just said to lose the weight and I’d be good to go but my breathing was just suddenly worse for no apparent reason that I could see. I couldn’t tolerate my CPAP anymore and I was requiring oxygen which was new for me too. What was wrong with me? All doctors blamed it on me. It’s your fault, you gained all this weight and now you are just fat and that’s why you can’t breathe. But I’ve been fat and this is different I would tell them but nobody would really listen. I was put on a Bipap which helped some but I was still struggling during the daytime.
So at my doctors advice, I had the gastric sleeve surgery and lost 90 pounds and you would think that I’d be cured but nope, I actually started on a cycle of chronic pneumonias and hospitalizations and failed discharges where now my doctors were blaming me for being noncompliant with their treatment plans. What? I am doing everything you tell me to do and you are still blaming me for being sick? I was growing increasingly frustrated with my pulmonary doctors and hospitalists. I was pursuing doing a thermobronchoplasty procedure in New Orleans as part of a clinical trial but at the last minute the team canceled me because the anesthesiologist didn’t feel comfortable doing my case. I was devastated. That was my last hope at getting relief for what I thought was just bad asthma that was resistant to everything that they were willing to give me. They were refusing to give me biologics because they said I was not a candidate so it was increasingly obvious that they were thinking I was either malingering or that I was a hypochondriac.
I am a retired respiratory therapist so I knew about TBM and had mentioned it several times to my pulmonologist and he even bronched me but he did it while I was sedated so he only saw a mild collapse, later on I learned that to properly diagnose TBM the patient must be awake during the bronchoscopy so most doctors do not properly do the procedure which may be why they miss this diagnosis so often in so many suffering people. Hopefully this will change as awareness goes forth.
Fast forward 2 years and again I was admitted to the hospital with a parotid gland and tracheal infection that spread to my lungs and it was so bad that the ENT told me that if I did not get some help locally at the University hospital then he said that I needed to get myself on a plane and go to Denver to the Jewish hospital or to Harvard before these doctors show negligence. He took a picture of my airway to send to my doctor to insist that they bronch me again and get to the bottom of my medical problems once and for all and that’s when I finally got to my interventional pulmonologist Dr. Arias who properly did the awake bronchoscopy and diagnosed me with a 90% excessive dynamic airway collapse (EDAC) and is now working with me to find out if I had an auto immune disease or an immunological problem or if I should pursue going to Boston for surgery to repair the EDAC. I’m finally beginning this journey to hopefully better health with a pulmonologist who understands this disease and is willing to work with my other doctors to make sure that they also understand this disease. I’m finally hopeful that TBM will get more recognition in the respiratory and pulmonary community and I try to spread awareness to all my medical providers.