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I was recently diagnosed with Bronchiectasis.MAC & Bronchiectasis | Last Active: Aug 27, 2022 | Replies (162)
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Replies to "Hi mmteach, Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and..."
I was fortunate to have been diagnosed early, 2006, at age 47, the bronchiectasis was mild to moderate, I was asymptomatic, but I had NTM/ MAC. A year later I got into a study at the NIH where I found out that I was also an Alpha (ZZ) Again, fortunately, pretty much asymptomatic for Alpha-1. I was on the cocktail of 3 – 4 antibiotics for over 6 years, but kept culturing positive for MAC and my bronchiectasis was starting to progress. I got into the clinical trial for Arikayce in 2013. I immediately started culturing negative for NTM. I highly recommend for anyone with NTM and not responding to the standard drugs to reach out to the 3rd phase of this clinical trial. You can call 866-825-3418 for information. I really believe inhaled therapy can be very effective.
Hello Lauralynn, I really do hope you join us on the Forum: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=8#post-226502 .. it is a great group of people!
BUT I am really writing you because the similarity really hit me .. hmmm Alpha (ZZ) .. now that sounds familiar?! Then I remembered .. I had done what doctors .. AND Dr. Aksamit refer to as the “spit test” called 23andme (https://www.23andme.com/) .. after my oldest son had done it .. kind of as a kick. BUT I find out some really kind of interesting things.
ONE was that I had a “genetic mutation” in the lung area! Hmmm .. I have certainly had enough lung issues. Mine is Alpha (MZ): Has one M and one Z form of the SERPINA1 gene. People with this combination may be at increased risk for liver disease, and may experience decreased lung function if they smoke.
Being quite sure Dr. Aksamit would laugh at the results of this “spit test” .. I showed him a copy of the results of this .. Nope! He requested a copy of it. I know there of probably thousands of undiscovered genes and 23andme only look at 23 .. BUT that is at least 23 more than I knew about before!
SO .. I was intrigued by your information .. AND will keep it mind on my journey with my Bronchiectasis, MAC, Reactive Airway Disease .. who really know exactly what is going on at this given moment?! So thank you for this good information. I hope you don’t mind if I repost your note and my reply on the MAC Forum? We are always trying to share new and good information! Hope it is ok with you? Katherine
Hi Katherine, No please share. I was a patient advocate / educator for 3 years in the Alpha-1 community. I know a bit about this disease, and, the other diseases that tag along with it….like bronchiectasis, MAC, etc. I HIGHLY recommend anyone with bronchiectasis, or NTM / MAC to be tested for Alpha-1 – it is a susceptibility factor for bronchiectasis and NTM. Almost all pulmonologist have access to free testing for Alpha-1 through the drug companies. They provide a free test kit and results. It costs nothing to the patient or the doctor. Ask for it. Please contact me by private message if you need help. I DO NOT work for any company. Can’t post my email as this site won’t allow it. Not sure why…..
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Safe sharing 🙂
Hi lauralynn, Thanks for the response. I am not coughing at all, I never have. So I’m not sure about any treatments at this time. The only thing the doctor has told is to prevent infections. So they said I should take a garlic and tumeric pill. I should try to build up my immune system,.I am trying to walk a little more and trying to eat healthier, but the doctor siad I should see him in 4-6 months. Is there anything else I should be doing to be preventive? Thanks,
Wow, your doctors are prescribing some very holistic things…garlic and turmeric, thats awesome. I take turmeric and eat a lot of garlic. I’m a big believer in boosting the immune system. Since I don’t know how progressed your bronchiectasis is, it’s hard to advise and I’m not a doctor. Sounds like you have some good docs. I would definitely step up the exercise to clear out your lungs and boost your immune system, and, I would ask your doctors about pulmonary clearance. I am a big believer in pulmonary hygiene. I think this might help prevent bronchiectasis progression. Get the gunk out of your airways so it can’t start an infection which in turn leads to bronchiectasis progression. My opinion.
Thanks for your input. My bronchiectasis is only a little spot on each lung right now. So i have nothing to clear out of my lungs as of right now. No coughing, since there is no gunk in my lungs as of yet. That is why I don’t know how worried I should be at this point-Is it even possible to keep it this way?
Welcome @lauralynn. Like you, I believe knowledge is power. @katemn recently wrote a great post about educating herself and at the same time not allowing her disease to define her. I love the message https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=8#post-226502 I hope you’ll join us on the MAC thread. There are many people I’d like to introduce you to there.
How are you managing your bronchiectasis? How does it affect your lifestyle?