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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.
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@busybeans What an encouraging post! Those of us who have lived with MAC and Bronchiectasis for any length of time certainly can identify with the difficulty in finding an expert, in getting good information, and in staying healthy in spite of it all.
I am fortunate to live in a larger Metro area, and be part of a large clinical practice with specialists who are experienced in treating MAC & bronchiectasis, and even better, who are willing to collaborate and seek expert counsel when not sure. Further, I am fortunate to have found this support group on Mayo Connect, who encouraged me to be proactive, to seek the right doctor, held my hand through the difficult antibiotic therapy, and taught me to concentrate on airway clearance, healthy diet and exercise to maintain my health.
Thank you for telling your story.
Sue
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11 ReactionsVery well said. I too continue to stay positive with the best outlook possible, eat right, exercise and most importantly keep my faith and trust in God to help me learn to live with this disease.
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5 ReactionsAnd God bless you real well! Couldn’t have said that better!
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2 ReactionsWhat an uplifting note, thank you for sharing your experience.
Ling
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2 ReactionsI am fortunate to be a part of this group. Thank you for your comments!
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2 ReactionsSince I was just recently diagnosed with MAC reading your comments and longer very informative posts make me know that I can and will live a long healthy life with this because I am a fighter and truly believe I can live with this without the harsh drugs. I stay active and truly believe God has taken care of me well and this will just make me stronger.
Thanks for all the posts you all have done because they teach me a lot and are encouraging
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5 ReactionsThere is a wonderful group on Facebook called Lung Matters that has been a treasure trove of information for me.
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3 ReactionsYou sure hit some nails on the head! I am very encouraged by your post. While we followed different but parallel paths to today, I too have opted not to do VATS on my RUL with a somewhat permanent cavity that seems to trap diseases. I am searching other opinions and letting the antibiotics work.
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3 ReactionsGood luck😊
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2 ReactionsSo glad to find this group. A couple weeks ago I tested positive for COVID and I woke up coughing blood and finally a clot. I called my pulmonologist and it took them two days for his staff to return my call. My primary care doc ordered a chest X-ray and no other clots were there. This was actually a good thing because I started looking for a support group and found this one. I got a list of doctors specializing in MAC and found a doctor 80 miles away. Waiting for them to call me right now. I was misdiagnosed for 6 years and now so antibiotic resistant the big 3 only suppressed the MAC. Agreeing with the suggestion to find someone that knows this disease even if you have to travel 80 miles!
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