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Radiation Lung Fibrosis, Bronchiectasis, Traction Bronchiectasis
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
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@windwalker consults at Mayo Clinic Florida and may be able to provide some input, @raney.
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1 ReactionThank you. I may look into that, but luckily, I have an appointment on 12/8/21 at the Pulmonary Specialty Clinic at UNC-Chapel Hill. That is only about 3 hour drive from. One of the members of this group went there and was pleased with the care and knowledge.
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1 ReactionAs far as someone who has your diagnosis, not exactly, but I do have problems resulting from radiation which I had 28 years ago. When I was told that they would treat my endometrial cancer with extensive radiation rather than chemo, I was glad that I wouldn't lose ode my hair. So silly. I have bronchiectsdid snd had another cancer caused by the radiation as well as two skin growths. It messed up my digestive system and I have a dilated esophagus as well as some lung fibrosis. When I saw the surgeon, oncologist and a small bowel gastroenterologist, they all told me, "We don't do that any more." (extensive radiation).It makes me wonder how many of us are still struggling that they did do it to!
Anyway just wanted you to know that there are others of us struggling with the results of long ago radiation treatment. Good luck at your appointment.
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1 ReactionHi Sue, thanks for your lengthy reply. I also do the saline solution in the nebulizer twice a day, postural training and at times use my arobica device.
My latest CT scan showed that my nodules Have gotten a bit bigger. But the doctor has no more suggestions at this point. I don’t think that the Saline solution kills the Mac ;it just helps the cleaning process of the lungs. I tend to have exacerbations 2 to 3 times a year and he puts me on Augmentin for two weeks. I am curious which anabiotic‘s you were placed on and also I’m curious if most of us are 60 years or older. Thanks so much, Barb in San Diego😇 I was first diagnosed with Sjogren’s syndrome which makes the lungs vulnerable. And the pulmonologist said the Mac infection was caused by my dirty showerhead at home. The showerhead needs to be cleaned profusely with vinegar at least once a month.
Pal, you said “ But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good.”
You’re wise to minimize use of antibiotics as they “take no prisoners” when turned loose in ones’ gut, killing the good along with the bad. Thing is though we occasionally find ourselves in a predicament where the “tradeoff” seems worth it.
One thing that suffers during the onslaught is one’s GUT MICROBIOTA. One thing we can do to minimize the damage is increase our intake of fermented foods which tend to be heavy with “gut-friendly” microbes.
Unpasteurized sauerkraut or Kimchi will likely do the trick. Available at the refrigerator case in “Foodie” friendly grocers…or better yet, make it yourself. Let me know if you’re ready and I will tell you how I do it. Don
MAC infections are "slow to grow and slow to go". 2 weeks of treatment won't do the job - the sputum culture needs to be sensitivity tested to see which antibiotics it will respond to, and treatment needs to continue 6 - 12 months after there is no more bacteria in the culture.
I was treated with Azithromycin, Ethambutol ANF Rifampin for 19 months, and yes, I am well past 60.
Sue
Hi Sue thank you for all your posts.As I started the antibiotic regimen after At least 6 years of MAC(unknown) i have begun to read the discussions on this site.It can be rewarding and confusing. What do you know about NAC and clear lung(haven’t found any up to date studies). Does anybody use them with the antibiotics?
I am not familiar with Clear Lung.
As for NAC (N-acetyl-cysteine) you can look at https://link.springer.com/article/10.1007/s40264-020-01026-y
This is a review of NAC studies in several lung diserases, mainly reviewing safety, by citing the studies with links to them at the end of the article, which makes them easier to locate.
Here is my own tiny (2 person) observation - my daughter (age 41) & I each have bronchiectasis plus different types of atypical asthma. I have a history of MAC & pseudomonas, she a history of intractable asthma attacks leading to hospitalization. We were seeing different pulmonologists in the same group practice, then she switched to a new doc due to a change in insurance. All 3 recommended trying 600mg NAC supplements, which we did. Each of us has had only one exacerbation in the past year, despite having histories of 3 or more apiece for several years. No hospitalizations or need for antibiotic therapy. Neither of us has had other med or routine changes, except for needing much less nebulized asthma medication than in the past.
Other people in the MAC group who have reported using MAC, what has been your experience?
Sue
Yes, I do have a bad gut. Bloating, difficulty with bowels. Never put the picture together with MAC. Guess you keep learning new things about MAC. Please give me your sauerkraut recipe. I will definitely try it. Nothing to lose.
I am just learning to use this site. I find it difficult to tie all the comments together. Just a little here and a little there.
It can be frustrating.
Hi @pal131, here are some things that might help clarify how the site works
- Get Started on Mayo Clinic Connect guide: https://connect.mayoclinic.org/get-started-on-connect/
- How to customize your notifications and settings https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-customize-your-notifications-and-settings/
- How to comment, reply, like, bookmark, and more https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-comment-reply-like-bookmark-and-more/
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
And if you're frustrated, send me a quick note using this form https://connect.mayoclinic.org/contact-a-community-moderator/
I'm always here to help. 🙂