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At NJH and need to vent

MAC & Bronchiectasis | Last Active: Jul 6, 2023 | Replies (70)

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@healthybon

Yes, I know how draining traveling to NJH is. Where I live in Georgia it’s slim Pickens for good doctors. I did find a Mac Bronk specialist Dr Swenson in Atlanta, and have an appointment on July 20. May I ask you, are u on or have you ever taken the big 3? Do they want you to?
Dr. Eddy at NJH told me the other day I have CO P D. As well as Bronk and mac. Today he told me he’s not sure I have COPD AND I was a basket case last night of fear; because he told me I had it and wasn’t sure. Thank God I am seeing Dr Daley all next week until I leave on the 7th. I want his opinion. I am very surprised I would be told this and the dr not be sure. Very upsetting.

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Replies to "Yes, I know how draining traveling to NJH is. Where I live in Georgia it’s slim..."

I was diagnosed in 2010 and tried the Big 3 twice. I failed both times. The side effects were too debilitating for me, and I discovered I am allergic to azithromycin and rifampin. Yes, my doctor wanted me to take them and still wants me to try to take them. Fortunately, he has allowed me to make my own decisions about my body and my quality of life. I have managed with airway clearance to see only a slow and/or stable progression. That's not to say that I haven't had a few terrifying episodes of hemoptysis when I've had a flare of one strain or another (and this is why the doctor would like for me to be on the Big 3). I have bronchiectasis and have had many different strains of NTM (and I've always figured some combination of those things meant I had COPD...funny, but I've never asked). At present (as far as I know until my next sputum sample), I am positive for kansasii (a slower growing strain). I am a non-productive cougher who hates airway clearance but I do it anyway - with 7% saline solution - once a day, not twice as instructed. In my experience, Dr Daley is a kind and caring physician. I hope that is your experience as well. Being there for the evaluation period is so very stressful...I'll be sending good thoughts your way.