(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi Brenda, it showed up last June and I"m not deathly ill either! Dr McShane told me that it was her job to worry, not mine and she wasn't worried about it. However, she did have me undergo a bronchoscopy with biopsies of a suspicious area but they didn't find it. They did find asperigullis (sp) but it didn't grow. A fungus shows up in my samples but never mucor again. She told me that it is very common to have some fungus.

Heathert. I was diagnosed with bronchiectasis and Mac about 5 years ago after a cat scan for a possibly perforated esophagus. I had been coughing and short of breath for a year or so, which was attributed to post nasal drip and my afib. As far as the allergies go, I’ve had them for many years ...well before I was diagnosed with Mac. Especially have trouble in large gatherings when people wear colognes. I also have sensitivities to foods and many antibiotics. I use fragrance free everything...soaps, detergents, and all natural clothing and bedding. Unfortunately, my condo has carpeting in the bedrooms and it is a costly proposition to put in hardwood floors. Won’t be doing that for awhile.

@windwalker ….was not sure how to list the link to the 2019 NJH workshop videos....so that members would see....if you are able to...would appreciate ...my tech skills are atrocious. take care...be well...thanks....terri @tdrell

I cannot take credit for posting the videos which were shared by tdrell. I was referred to Dr McShane by another outstanding pulmonologist at the U of Chicago when my sputum sample came back positive for MAC. Yes, I am very lucky to have her for my physician. In addition to her doctoring, she is so optimistic that I told her that I was going to record her if she called again. She had called to reassure me with respect to a scary fungus (mucor) which showed up in a sputum sample. We have a great rapport and I think people can see from her video that appointments with her are not only productive but fun.

Thank you!!

Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me), with awful post nasal drip. Then, infrequently, I cough so bad it makes me gag! I started wearing bladder leakage pads also 2 years ago for a couple of months. But, then found out it wasn’t my bladder after all. At my yearly GYN appointment when I told my Dr about it, he didn’t think it was urine so he did a biopsy and surprise, I had endometrial cancer. Thank God it was very early stage! I had surgery and radiation and am now 2 years cancer free. AND I no longer wear a bladder pad. So I guess my cough and throat clearing isn’t that bad after all, but, it’s still annoying sometimes. I’m happy, and sad, there are others that understand this crazy journey. 🙏🏻 for all.

@windwalker Thanks so much Terri I would miss all of you also if I left, so I will not be leaving.. You and I definitely go way back ,along with others on this site, you are all like family to me and have helped me no end along the way. Being able to help others with MAC-MAI is also wonderful, I know how I felt when I was diagnosed, so scary. Right back at cha with the love and appreciation!!!!!!

@irene5 Hello Irene! I thought of you as I watched that 'Nutrition' video. I ate two bowls of cereal and two bowls of chili!!! I ate enough for both of us.

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

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait... I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!