I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!
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Hi @mmteach, welcome to Connect. Here is some information on Bronchiectasis from the American Lung Association, I hope that you find it useful! http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/bronchiectasis/
I also want to connect you with one of our mentors, @katemn, who would be an awesome person to share experiences with. How have you been handling your diagnosis so far?
It’s a shock really. I am 55 years old, and my mother died from this. I am having a hard time putting this into perspective, as I have seen the worst of this condition. It’s hard not to look at this a death sentence. I am grateful that I don’t have symptoms yet, but it’s difficult trying to find a doctor that specializes in this that is also in my insurance network.
Hello MM, so glad you found this forum. Personally what I do for myself and my husband is google the name of the doctor .. hopefully by looking at EVERYTHING that comes up I can find out where they went to school (the tougher the school they could get into I figure they must be pretty bright!) .. sometimes you can see what their “interests” are .. what publications they have written. Then you can hopefully see if they have any experience in Bronchiectasis. You might call your insurance network .. get the name of every Pulmonologist .. call every single one .. AND request to be told the NUMBER of Bronchiectasis patients they have worked with in the past two years. That would be VERY important .. if they do NOT have current/recent patients .. that means they aren’t keeping current with the disease.
Meanwhile research .. BUT do NOT be so scared!! You MUST be your own best advocate! IF there is NOT a specialist within your network .. you may have to raise KAIN to be referred to someone outside who CAN help you. You may have to pay 80/20 .. that is what happens to me .. but it would be worth it to get straight answers. If that happens .. try to get referred to Dr. Timothy Aksamit at Mayo Clinic in Rochester, MN. He is an expert Pulmonologist.
MEANWHILE .. it is VERY important to keep your lungs clear. The mucus in the bronchial tubes can be a breeding ground for mycobacterium resulting in a disease called MAI/MAC which happened to me. Be SURE to exercise .. get enough sleep .. eat healthy .. AND NOT stress over this. Stress is terrible for our bodies. Remember .. our bodies CANNOT take care of us .. UNLESS we take good care of it! Be kind to yourself on this our shared journey. Don’t be so afraid .. I was diagnosed in 2011 .. and all I do is cough .. BIG TIME which is a pain in the batooty .. but lots of people have a lot of bigger problems than I have. Go forward in joy .. AND peace! I am sending you positive energy and big hugs! Katherine
Another excellent resource is http://www.bronchandNTM360social.org for more information on bronchiectasis. Dr Aksamit at the Mayo is an expert in the field as well as many others if you aren’t in the MN area. http://www.NTMinfo.org has a list of doctors that many patients have recommended.
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura
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Welcome to Connect @turtle3656. Thank you for posting these useful resources, which a couple of members have also recommended.
Tell us a bit more about you. Do you live with lung disease? NTM, COPD, bronchiectasis? We look forward to getting to know you more.
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?
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…..
We advise members to share their personal contact information by private message rather than publicly on the discussion threads. To private message another member, simple click their username and then click the envelope icon in their profile.
Safe sharing 🙂
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