Hello, the forum knows me as Regina…you have found a wealth of shared experience in this group…and yes Sue as Mentor is like no other.
Here is my contribution today. Firstly, I share my sympathy…if we were standing next to each other…that would come as a strong long hug with a kiss on both cheeks (family culture). I believe that many hold back on expressing or acknowledging the “sadness” or disappointment of the not good events or experiences we have…and that makes those experiences harder to live with. I am sad for each and every one of us in this group…YET…I am grateful and enthusiastic for each and every one also…that we are strong, and we are determined, and we are real.
My case to share. I too was labeled Lady Windermere Syndrome. MAC came out of nowhere…during pandemic. As Sue has pointed out…so to grow…I first realized something was wrong 2years before diagnosis when climbing 2 flights of stairs left me breathless and with legs that felt like concrete pillars. I was 62, 118lbs, very fit and active. The SOB (shortness of breath) resulted in a pulmonologist telling me I had late onset Asthma and sent me home also with inhalers (Albuterol & Brio). My PFT(pulmonary function test) were tough to handle…but I always passed…good high oxygen levels…I was too healthy.
This went on for 2 years…I got more & more exhausted and weak. SOB never got better…it got worse. Cardiac doctors ran all sorts of diagnostics because my BP shot up…when I struggled for breath…& I would hyperventilate a lot or just stop breathing. Again, I was too healthy said the docs. 2 years later during the pandemic…I had horrible chest pain so cardiac doc sent me to ER for a suspected PE(pulmonary embolism). The CAT scan showed the truth…the nodules and bronchiectasis were in black and white. Another CAT scan & Bronchoscopy later (2 months after ER visit) confirmed MAC. Off the inhalers (my pulmonologist said steroids were not a good idea on daily basis)…new sad diagnosis and the unknown swirling around us(my blessed husband lives every moment of this with me)…I felt so so sick…I insisted they treat me. Because of my low BMI, my height(🤷🏻‍♀️) and my weakness…they offered me the cocktail of three (Azithromycin, Ethambutol, Rifampin). Like many will testify, not an easy treatment plan, I managed to stay on it for 6 months. The side effects were my reason for quitting the treatment plan. The good news is that during those six months, I got my strength back, my quality of life was returning to what I had (I had lost my voice and my hearing was impaired). I went to NJH in Denver CO for a second opinion…they are an amazing team of superstars…get it done in record time…they have the drill down best(I worked in a hospital in NC and come from doctor family). I visit NJH in 2 weeks for my year follow up. NJH works in tandem with my ID doctor here in NC.
So…sharing my thoughts….get a good team of doctors ( Infectious Disease, Pulmonologist and PCP..& any other specialty you require) get a second opinion, weigh and pray about how you feel and what you want for yourself & family today, tomorrow, next week….and make the best decision for yourself. Medications work…sometimes…drugs always have a trade off…they can and do save lives…sometimes.
No pharmaceutical company has come up with “the treatment pill” to cure MAC…medicine has not devised the treatment to reverse bronchiectasis…yet. The nodules and any cavities need to be followed closely by your team…meaning repeated CAT scans (mine are every 6 months) to measure.
Hope this helps in some way. Be safe and brave.
Regina