Oh Desperado, I could feel your pain as I read your post. Losing your husband is more than I can imagine. I am so sorry for your loss. Let this group be your tether as you try to right yourself amidst such overwhelming grief. I've found these folks to be a tremendous support system - especially for one that has no other family.
I encourage you to continue to listening to both your gut and your doctor. I just saw my local pulmonologist yesterday and his take on things is a 180 from what my doc at NJH told me last month. I have to weigh both of their opinions/recommendations and then make my own decision. Like you, I deal with chronic pain on a daily basis from unrelenting migraines and gastro issues that left me without a colon, and even though I tried twice, I couldn't tolerate the side effects of the drugs. Many, many years later I'm still upright, still walking 3 - 4 miles a day with my dog, still maintaining my weight, still able to breathe on my own, and still believe my decision not to wreck my body while trying to get rid of NTM is the best choice for ME. How I wish I were one of the "lucky" folks who took the drugs for 18 months, cleared the disease and lived happily ever after. I am both envious and thrilled for them. It's just not my journey. So I'll continue to do my best with my airway clearance and exercise and know that if a miracle should heal me I will be eternally grateful. As it is, I am grateful for every day I don't cough up blood, every day my 02 level is good, and every day that I can think clearly without the nagging brain fog that overcomes me at times. Bless you as you walk through this day!

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