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conniec (@conniec)

Do Bronchiectasis and MAC go together?

MAC & Bronchiectasis | Last Active: May 8, 2021 | Replies (66)

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@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Replies to "Hi Connie, Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis...."

@colleengyoung Colleen, I assume everybody’s situation is different. In my case, what I have learned from the pulmonary specialist I have been seeing is this: my bronchiectasis has caused the walls of my bronchi to thicken, which in turn makes it difficult to expel mucus. Bacteria, including the ones causing MAC, are more easily caught in the thick mucus and fester. So I have MAC because I have bronchectasis.

Thank you for your reply. I do know I have widening of my bronchial tree and therefore collection of mucous but don’t know if I have infection. I have very few symptoms and my lung function is normal. I do cough up sputum sometimes and am now on nebs and aerobika to treat that and induce sputum. I have signed up with Mayo to get a second opinion but due to volume can’t get in for awhile. I guess I am wondering if I’m festering infection that I don’t know about and should be treated. When I was last in pulmonary clinic, they did induce a little sputum so I should get a read on that soon. However, it seemed more like saliva to me. I realize I am kind of rambling here. Just am glad to have a place to do that about this problem. Thanks.

Hi Colleen, Thank you for your reply. I am just wondering what percentage of people with bronchiectasis have or develop MAC as that is what is most of the posts are about. I have some sputum production but very seldom and no other symptoms that I can tell. No testable decreased pulmonary function. Am on nebs and aribika now. Had second Ct scan that shoes bronchiectasis with numerous mucous areas and one nodule that they are following for changes. Does that mucous sitting down there create infection that doesn’t create overt symptoms? I have tried to get ahold of my clinic to clarify things but they are not responding and I won’t be seen for 3 to 6 months. I am registered to eventually come to Mayo but was going to wait til fall. Now think I should try to get in sooner. Just presenting the thoughts that roll through my head. Thanks for this site and listening.:)

@conniec, so glad you found the forum. You will find lots of great information here just by reading through the past and present post that others share. There is a news letter that’s called Bronchiectasis news today. Its fairly new and free to sign up and full of really good stuff. You can search for and print articles that interest you. There are also seminar videos for 2015 & 2016 that National Jewish Health sponsers and hosts. Its for health provider’s, Patients, families and friends and can be watched in small increments or a whole day. There is nordphysicianguids.org/nontuberulous-mycobacterial-lung-disease-ntm/ its from The national organization for rare disorders and is good easy to understand info. The american thorasic society, American lung association, and of course the mayo clinics website all are good references. You cant get all the little tid bits of priceless information that poeple in this forum share anywhere but here. So I hope this helps and keep coming back.
Becky

Hi, I’m new to the forum. I was diagnosed with MAC about 11 years ago, at the age of 39, after a chest x-ray for suspected pneumonia. They found nodules on my lungs. I went for about 5 years of pulmonologists “just watching it”… I tried the MAC prescription protocol 3 times and could not tolerate it, last time, put me in hospital 5 days with acute kidney failure. I’ve been through 4 pulmonologists and an Infectious Disease clinic. My latest pulmonologist did bronch, CT scan and blood word on Jan 13 and found I had bronchiectasis and multiple additional bacteria and fungus in my right lung. I have a small portion of my middle right lobe that is “dead.” I am guessing that associates the MAC and bronchiectasis. I am now at a point where they are sending me to another Infectious Disease specialist and have discussed removing that portion of my right lobe that is “not functioning.” I’m looking for anyone in a similar situation that has tried the protocol (ethambutol, rifampin, and azithromycin that could not tolerate it to see what your 2nd and further options were.

Welcome to the forum. I have been on that drug protocol twice in the last year and cannot tolerate them. I have now been referred to an infectious disease specialist. Waiting until June 20 for appointment. Other than the standard drugs, has anyone else had luck with others.

Hello, I have a dead portion in my lung too, a good size chunk actually. My
lungs are so bad that they are considering a double lung transplant. Although to
meet me, you would think I was just fine. I owe my good condition now to
treatment at the Mayo Clinic in JAX. Don't know how long I will feel this good,
but for now I will just enjoy it!
 

Hi Suzy, ask your doctor about inhaled antibiotics. Learned at a recent
conference that combining tobramycin with another antibiotic like cipro for two
weeks is good.
 

Did they indicate at the conference how long to do this regimen?

Hey WW, hope you are doing well. You mentioned "JAX". What is that? Also how long does it take to get an appointment ay Mayo? Im in the process of getting clearance from my doctor and Humana and want to set up an appointment as soon as that happens.
Happy Labor Day,
Russ

Hello Russ, JAX is short for Jacksonville, Fl. everybody down there uses
that abbreviation. It took several months before I could get an appt. It all
depends on how busy they are. They do not require a referral, you just call them
and ask for an appt. They will ask that you bring all of the medical records you
can get your hands on. They will then scan your records right there on the spot
and create a file. I love the Mayo because they operate like a well oiled
machine. Generally, they do labs first thing in the morning, x-rays and/or CT
scans, and any other tests they might need; then you meet with the doctor at the
end of the day. He has all results back and are in his computer. He then goes
over the findings and discusses treatment.
 

Hi @russt,
You’ll find the online appointment request form, as well as phone numbers for Mayo Clinic Jacksonville at the link http://mayocl.in/1mtmR63.

  Request Appointment