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Thu, Oct 31 11:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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.

Tue, Oct 29 3:36pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

Thu, Oct 17 7:11am · Medical Cannabis for MAC in MAC & Bronchiectasis

Agree 100%. I was just wondering if there would be a difference between the two.

Wed, Oct 16 7:55pm · Medical Cannabis for MAC in MAC & Bronchiectasis

I am interested also. Would you know if there is a difference between vaping and smoking? I tried smoking a couple of times a few years ago, but it made my chest hurt and made me cough up thick, green phlegm for at least a day afterward. At that time I didn’t know I had bronchiectasis or MAC. I just knew then it was NOT for me. I wonder if vaping would be different now.

Wed, Oct 2 6:56pm · Best Shower heads for MAC in MAC & Bronchiectasis

I will definitely ask about it when I go.

Wed, Oct 2 5:14pm · Best Shower heads for MAC in MAC & Bronchiectasis

I do not have any special shower head, nor do I soak my regular shower head in anything. I’m not advocating one thing or the other. I just wanted to say Dr. Kamelhar is my Dr. I have been seeing him since my Dx from a biopsy done at NYU in 2016. He has not recommended any shower head TO ME, nor has he recommended any way to clean my shower head. He did tell me to absolutely avoid hot tubs. He also is not an advocate for medication. He recommended lung clearance every day, and to sleep on a wedge. Just thought I’d add a bit of info to the conversation.

Mon, Sep 23 10:01am · Lung nodules and MAC in MAC & Bronchiectasis

@taya Hi, I was diagnosed with lung nodules from a CT scan back in 2013. At the time, I was never really given an answer to what would cause nodules. I've never had a bronchoscopy, but others on this forum have and say its not so bad. My pulmonary Dr at the time just had me go for a CT scan every year to "watch it". The nodules never fully disappeared, but would "wax and wane". In 2016, when I started coughing up blood, the CT scan showed a nodule that was slightly over 1cm. It was a concern since it was not very large the previous year and then had gotten so big so quickly. I had surgery to have it removed and biopsied. That's when they diagnosed me with MAI/MAC. I started seeing an NTM specialist, who also thinks its best to take a wait and see approach. He also diagnosed me with bronchiectasis. I have not been put on any antibiotics but I do lung clearance exercises, nebulize with saline and sleep on a wedge. I have now been told nodules are also caused by acid reflux, or silent aspiration due to acid reflux. So I try to manage that as best I can; no eating past 6:00 PM, (or wait at least 5 hours after eating to lay down), sleep on a wedge, TRY to avoid foods that cause reflux. I've never heard of having chemo or radiation for nodules. After having radiation for endometrial cancer, I think I would prefer NOT to have radiation on my lungs. Has your Dr given you a reason for the nodules?
Good luck. I hope my long story put you a little bit at ease. LOL.

Sun, Sep 8 8:08pm · In shock after MAC diagnosis in MAC & Bronchiectasis

@dsilva Hi, who do you see in NY? I’ve been seeing Dr. Kamelhar assoc with NYU since 2016. That has been his approach also. I have nodules that come and go, and some shortness of breath, but no other symptoms. I also have bronchiectasis. My regular pulmonary Dr has also agreed about the wait and see approach. I have learned that even if you go on the antibiotics and get rid of it you can still become reinfected and might need to be treated again. I think that’s why they suggest waiting.
Gina K