Radiation Lung Fibrosis, Bronchiectasis, Traction Bronchiectasis

Posted by tessa2 @tessa2, Oct 29, 2021

Had Hodgkin's in 1992! Mantle Radiation. Now 69 years young and getting some late effects from past treatments. No chemo. Looking for help with diagnosis of Traction Bronchiectasis. Not much info out there. Was taken by ambulance recently to hospital for coughing up a lot of blood and "tissue". Very frightening! Bronchoscopy showed clot which they aspirated. Doctors said this could happen again.
As far as Bronchiectasis, I don't have typical symptoms such as productive cough. Thinking about Mayo at this point. Any help or advice would be very much appreciated or if you hv same issues would love to hear from you. Kathy

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@raney

I would like to go to Mayo but with all he congestion at this time, I can't stay away from nebulizer and smart vest for more than about 4 hours during the day. I live in NC.
Which Mayo do you go to?

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Rochester -- but I've heard good things from the one in Florida. I think one of the mentors on this site uses Jacksonville. That would be closer for you. I do think you need to get there though. That's a mighty lot of your daylight hours and surely there is some help for that. Let us know.

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Thank you. Yes the one in Jacksonville FL would be closer for me. I will see if my doc will refer me.

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@raney

I would like to go to Mayo but with all he congestion at this time, I can't stay away from nebulizer and smart vest for more than about 4 hours during the day. I live in NC.
Which Mayo do you go to?

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There is a Bronchiectasis Clinic in Chapel Hill, North Carolina. Dr Mary Leigh Anne Daniels. She is great!

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Thank you for letting me know., I actually have an appointment there on Dec 8th with but not with Dr Daniels. I thought the broncholithesis focus at CH had just started I am only about 3 hours away.

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@auntnanny

I guess I was lucky -- I got in quickly -- 4 days. It was consultation to begin with but after the consult they sent me for a lung x-ray and there were a number of doctors involved (at least 3 -- maybe more) and they told me immediately what the problem was and then they set me up with a pulmonologist there. It was a few weeks before that appt if I remember correctly but -- not long. They told me "You do not have cancer -- you have bronchiectasis". that was good news to me because of course I was fearful in that I had been sick a few years and had lost tremendous weight and had seen many specialists in about 100 miles of here. Had gotten nowhere. I've been back only 3 or 4 times but it's a long drive from here. I can keep in touch with my doctor there through the portal they use and he answers quickly. If I call, his staff is very good too. I plan to go back as soon as Covid settles down a little. I'll be anxious to know how you feel after you've been there. Be sure to post about your experience. Jan

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Thank you. I will certainly post after my to Mayo. K

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@raney

Thank you for letting me know., I actually have an appointment there on Dec 8th with but not with Dr Daniels. I thought the broncholithesis focus at CH had just started I am only about 3 hours away.

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I don't know any of the other Dr's there anymore but she specializes in Bronchiectasis and MAC.

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I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC and bronchiectusis. I was getting sick with bronchitis and pneumonia frequently, but my Doctors in the Chicago suburbs or Naples FL never mentioned that I may have these issues. I was really shocked to find out that there was a named disease for this issue. But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good. All the pulmonologists seem to be recommending, and trained to prescribe the 3-4 antibiotics a day program for a year or 18 months. I have several good friends that have been on the program and it was not helpful to them. It doesn't get rid of any issues, you just have to keep using the drugs for the rest of your life. Other friends, have had major side effects, some not even being able to tolerate the drugs. There has to be a better solution!

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@pal131

I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC and bronchiectusis. I was getting sick with bronchitis and pneumonia frequently, but my Doctors in the Chicago suburbs or Naples FL never mentioned that I may have these issues. I was really shocked to find out that there was a named disease for this issue. But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good. All the pulmonologists seem to be recommending, and trained to prescribe the 3-4 antibiotics a day program for a year or 18 months. I have several good friends that have been on the program and it was not helpful to them. It doesn't get rid of any issues, you just have to keep using the drugs for the rest of your life. Other friends, have had major side effects, some not even being able to tolerate the drugs. There has to be a better solution!

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thank you . This info is helpful. I too had the bronchiectasis for several years before I was diagnosed.
Apparently the doctors knew but they did not tell me. I changed primary doc and pulmonologist.

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@raney

thank you . This info is helpful. I too had the bronchiectasis for several years before I was diagnosed.
Apparently the doctors knew but they did not tell me. I changed primary doc and pulmonologist.

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I too had it for some time before diagnosis. It was masked by "intractable " asthma. Finally, a sharp-eyed radiologist, looking for pneumonia, spotted it on a chest xray and the circus began.
Sue

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@pal131

I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC and bronchiectusis. I was getting sick with bronchitis and pneumonia frequently, but my Doctors in the Chicago suburbs or Naples FL never mentioned that I may have these issues. I was really shocked to find out that there was a named disease for this issue. But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good. All the pulmonologists seem to be recommending, and trained to prescribe the 3-4 antibiotics a day program for a year or 18 months. I have several good friends that have been on the program and it was not helpful to them. It doesn't get rid of any issues, you just have to keep using the drugs for the rest of your life. Other friends, have had major side effects, some not even being able to tolerate the drugs. There has to be a better solution!

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If you do some reading on other discussion in this group, you will find that many of us have found an alternative method of keeping MAC either at bay or out of our lungs. Here is the process in a nutshell:
Airway opening - either via inhaled or nebulized bronchodilator
Airway cleaning - using nebulized 7% saline solution
Airway clearance - huff coughing, a positive airway pressure device like Aerobika or Acapella, a percussion vest, or manual percussion sometimes including postural drainage
Some people use N-acetyl-cystine or glutathione, Omega-3 or other supplements
Quickly responding to the first hint of a respiratory illness, in consultation with docs
Periodic monitoring of lungs via CT and/or sputum cultures.

This is needed once or twice daily depending on the severity of one's Bronchiectasis. It sounds daunting but my regimen takes 20-30 minutes in the morning, while I read the paper and my email. I add a second session if my lungs are acting up.

7% saline is used in the neb because it has been shown to halt the growth of MAC bacteria.

This regimen has kept me completely off antibiotics for 22 months. My latest CT showed no change in my lungs since 2019.
Sue

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