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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."

Thanks for the tips. I have been sticking my head under the bathtub faucet after the bath. I even bought knee pads when doing so. Lovely look! I will try kitchen sink. Terry

@128128terry11t Ba ha ha ha, Terry! Just had a funny mental picture of you in your knee pads! I think you will find the kitchen sink so much easier. By the way, wasn't making fun of you, I am just being silly. - Terri

If we can't laugh, we're in big trouble. Just add a Cambridge mask to the knee pads image! Terry

I am a Respiratory Therapist and asthma educator for 45 yrs. for over a year I was treated for asthma and bronchitis until just before Thanksgiving last year I started coughing up blood just before I left work. Scared me and everyone at the hospital to death. Found bilateral upper lobe pneumonia by January 2017 had a bronk. And it came back with MAC. I honestly knew nothing of this illness and had never knew a patient of mine diagnosed with it. I did bronks and pft also for years and never crossed its path. No one at all 3 hospitals and RT departments knew of it either. I am surprised at how many health care workers I see on here. I have learned a lot. I think this is missed a lot.
At one time I was IGM deficient but it is normal now. Was on dyoxcyline for 2 weeks after my bronk and that seemed to clear my chest and I quit coughing. Now Have been on the three meds for 9 weeks. And even my pft has improved almost back to pre MAC and I am not spa any more. Had a chest x ray today it is clear and I see infectious dr tomorrow. Hope this is going in a good direction

Soa not spa

Cbest....wow....what a lot has happened to you in a short time period!!!! Please ....do not allow yourself to be put on the big "3" Antibiotics til you have had a Cat scan of chest and are seen by a DR who specializes in NTM infections.where do you live?
Tdrell

I have had 3 cts over the course of 3 months so far all with bilateral upper lobe pneumonia and multiple nodules I am seeing an ID dr and pulmonolgist both. Had a bronk that cultured MAC. And sensitivities were done. I was so soa that my chest hurt when I walked. My pft fvc had decreased from 80 to 57. I am on biaxan, Ethambutol and riframpam for the past 9 weeks. Doing good so far on them. There was one Med I could not take. So ID dr recorded on this combination . I am better and pfts improved back to 75-77% range. Chest x ray yesterday read clear and in 2 weeks will have another Ct. I no longer have a cough or congestion

I live in bowling green ky and know there is a Mac clinic at vandy in Nashville if I need it

@cbest, Hello cbest! Do you have a first name? Your post was the one bright spot in my day today. Your bit of good news was uplifting. I am so glad that you are experiencing so much improvement. Please keep us posted on how you are doing.

Cheryl x ray was clear no bronchitisis on last Ct. will repeat Ct in 2 weeks. All lads good too