Bronchomalacia

New Pulmonologist is Win

For the first time in three years, I feel like I have a pulmonologist I can trust again, and let me tell you what a relief that is. 3 years ago I had to switch insurance to Kaiser to be able to afford my CVID treatment, and had to stop seeing my awesome, wonderful pulmonologist who had treated me for years. Kaiser had me see an Allergist/Immunologist for the CVID and asthma, and we kind of got off on the wrong foot, with him (Dr. Lo) not really taking me seriously, (although after three years with him he’s finally more in my corner.)

Anyway, with this latest severe flare, I finally got him to refer me to a Kaiser pulmonologist, and I am over the moon. The pulmonologist, Dr Miyai, listened to me. He treated me like an equal partner. He respected my expertise in my own, life-long health condition. He’d read my entire damn medical file and even told me that the surgeon who did my bowel resection way back in 1993 had died, which — sad, but it showed me that Dr. Miyai had really plumbed the depths of my file. Also, he acknowledged my being transgender without batting an eye, which was awesome.

So here’s the latest on asthmageddon

  • He said I have bronchiectasis as well as asthma and bronchomalacia, and he plans to treat me as if I had cystic fibrosis in terms of lung hygiene
  • Prednisone taper is quite slowed and extended, so I’ll be on 40 mg for another 3 days and then taper until near the end of May. I’m not delighted about that, but hey, breathing is good.
  • Continuing to nebulize albuterol every 4 hours as needed, + twice daily inhaled steroids
  • Starting hypertonic saline nebulization daily to help clear sticky mucus
  • Getting an Acapella Device to use daily, again to help clear mucus
  • Continuing with the Chest Physiotherapy/PDP daily, although I’m hoping that I can switch to just doing the Acapella device after this flare resolves, because it’s exhausting for me (though frighteningly effective) and it eats an hour of saunterleftside’s time when we do it, too. Also there is no such thing as dignity when you are coughing a cup of mucus out of your lungs a half-teaspoon at a time for an hour. 
  • Full pulmonary function testing in 2 months, after this flare resolves

I am still really sick and exhausted, but I have hope. It was really helpful to have saunterleftside at the appointment with me, because he could give a better estimate of how far I could walk without getting winded (20-40 feet) than I could. Also the moral support. He’s a good friend.