How to Live Well with MAC: Find an Expert, Learn All You Can to Thrive
I wrote this last week but I’ve hesitated to post it lest I be considered a know-it-all or Susie Sunshine. I’m neither. Like you, I’ve spent innumerable days and nights fretting about a bloody cough, a bronchoscopy, or yet another CT that shows worsening of the disease…we’ve all been in those scary, uncertain situations. I’d just like to share my experience with the hope that it might be of interest or help to someone reading this somewhere.
I’ve just returned from my 16th visit to National Jewish in Denver. While this is an expensive, time-consuming, anxiety-filled trip (my first time at a restaurant/hotel/or in a public setting since March 2020), it is also one that is well worth the time and money spent, and the tears shed. Here’s the deal. I live in a city that has only one pulmonologist with any true knowledge of NTM. (Thankfully, I’ve finally become his patient and can trust what he says.) Not so with the others. In December I was given two prescriptions by another pulmonologist (who said Paxlovid no longer worked) in case I contracted Covid. I was told to take them immediately if I tested positive. So since then, I’ve thought that I had a “safety net” if I got it. I learned last week from my NJH doctor that not only are the two drugs totally ineffective against Covid, but both would make me sicker than Covid! My NJH doctor was appalled that I’d been given such misinformation (and assured me that Paxlovid is the drug of choice for Covid). I also learned that the local radiologist who’d read my lung CT scan in June and said I had COPD didn’t have a clue what he was looking at. I don’t have COPD. I have atelectasis, bronchiectasis, and NTM (kansasii). My point is this – unless you live in a city that has a pulmonologist or an infectious disease physician with a thorough and up-to-date understanding of NTM, go to NJH or Mayo or Cleveland Clinic or UT. Find an expert that you can trust. Fortunately for me, I started with National Jewish. I have always received excellent care and compassion from the techs to the doctors (with the exception of one vampirish phlebotomist). I am not cured…nor will I ever be. I’ve had cavitary nodules appear, close, and/or disappear. I have tried and failed the 3 drug regimen twice because of the side effects. At this point I’ve opted not to do VATS for the atelectasis. I do airway clearance, walk 3 miles a day, and try to eat well. I was first diagnosed in 2010 and I’m still alive and kicking…maybe a little more fatigued, a little more breathless, and definitely 13 years older. But there is hope. There is life after this devastating diagnosis. The key to all of it though is quality care…and for me personally, the belief that God is always on my side.