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 group.

Hi @tessa2, welcome. I moved your message to the MAC & Bronchiectasis group (https://connect.mayoclinic.org/group/mac-bronchiectasis/) so that you can connect with others who have bronchiectasis, like @windwalker @sueinmn @auntnanny @lindam272 @ljfoo @rits @megan123 and others, some of whom go to Mayo Clinic. I'm confident they will have some thoughts for you.

Tessa/Kathy, what questions would you like to ask?

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I'm 80 years young now…… and I first went to Mayo's in Rochester 7 years ago. It is certainly worth your time. They diagnosed me there within an hour and set me up with a pulmonologist who I feel has been very kind, thoughtful, and has good answers. He's Teng Moua. I've been to see him only 3 times over the years but he's great with emails directed to him. There's never a charge for any correspondence with him or help from him in any way. I'm in Kansas so it's a 12 hour drive……. I can have a cat scan or sputum test done at a local lab and sent to him. He will respond with his opinion and recommendations from that. I feel I need to go back up there before long but the pandemic has kept me from wanting to be in crowds these days. But….. I'm planning to do so this coming year. I hope you will give them a try. I do feel you will come away feeling much better than before your trip. Let us know what you do and how you feel about them. Jan

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@auntnanny

I'm 80 years young now…… and I first went to Mayo's in Rochester 7 years ago. It is certainly worth your time. They diagnosed me there within an hour and set me up with a pulmonologist who I feel has been very kind, thoughtful, and has good answers. He's Teng Moua. I've been to see him only 3 times over the years but he's great with emails directed to him. There's never a charge for any correspondence with him or help from him in any way. I'm in Kansas so it's a 12 hour drive……. I can have a cat scan or sputum test done at a local lab and sent to him. He will respond with his opinion and recommendations from that. I feel I need to go back up there before long but the pandemic has kept me from wanting to be in crowds these days. But….. I'm planning to do so this coming year. I hope you will give them a try. I do feel you will come away feeling much better than before your trip. Let us know what you do and how you feel about them. Jan

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Thank you so much Jan! Yes planning going to Rochester soon. Making appt today. I do have Bronchiectasis, however it doesn't involve too much breathlessness, oxygen or coughing at all.
It is called TRACTION bronchiectasis. I hv radiation Lung fibrosis from chest radiation 30 yrs ago! Few weeks ago coughed up tons of blood, rushed to hospital. My pulmonalgist said this could happen again! I felt like I was suffocating. Basically living in fear of it happening again. Husband w/ me 24/7 but getting watch with a 911 feature. I will post about my experience at Mayo. Hope you continue to do well. What is your diagnosis if I might ask? Take care Kathy

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Yes, of course. My diagnosis is bronchiectasis — pseudomonas which I've not been able to rid because I can't take Toby. Wish I could. Nothing else seems to work. I also have a bit of Mac but not enough to treat I'm told. I have five different meds to go thru nebulizer which takes me an hour each day. Occasionally I miss a day but not more than one every two weeks. I do cough up phlegm — some days worse than others but if I don't eat a bite of anything or drink, it is less coughing. Weird because Mayo's ruled out gerd and I believe they are right in that I have no gerd symptoms and the coughing comes as soon as a bite is swallowed. Seems a lot of it is in throat. But still, the phlegm is in lungs so — who knows????? I'm doing "okay" I think — for now. Thank you for asking.

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@auntnanny

Yes, of course. My diagnosis is bronchiectasis — pseudomonas which I've not been able to rid because I can't take Toby. Wish I could. Nothing else seems to work. I also have a bit of Mac but not enough to treat I'm told. I have five different meds to go thru nebulizer which takes me an hour each day. Occasionally I miss a day but not more than one every two weeks. I do cough up phlegm — some days worse than others but if I don't eat a bite of anything or drink, it is less coughing. Weird because Mayo's ruled out gerd and I believe they are right in that I have no gerd symptoms and the coughing comes as soon as a bite is swallowed. Seems a lot of it is in throat. But still, the phlegm is in lungs so — who knows????? I'm doing "okay" I think — for now. Thank you for asking.

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What is the name of your nebulizer. I am impressed if you can do 5 meds in 1 hour. I am looking at ways to cut my time spent nebbing down. Any suggestions will be appreciated.

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@auntnanny

Yes, of course. My diagnosis is bronchiectasis — pseudomonas which I've not been able to rid because I can't take Toby. Wish I could. Nothing else seems to work. I also have a bit of Mac but not enough to treat I'm told. I have five different meds to go thru nebulizer which takes me an hour each day. Occasionally I miss a day but not more than one every two weeks. I do cough up phlegm — some days worse than others but if I don't eat a bite of anything or drink, it is less coughing. Weird because Mayo's ruled out gerd and I believe they are right in that I have no gerd symptoms and the coughing comes as soon as a bite is swallowed. Seems a lot of it is in throat. But still, the phlegm is in lungs so — who knows????? I'm doing "okay" I think — for now. Thank you for asking.

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I will have to Google that diagnosis. I did make Mayo appt today. 12/29th is earliest they could give me. How long did you wait? Also, was your 1st appt a consultation only? Not sure if I will b getting tests that day. Do you go to Mayo for follow up appts? Wish I could hear from someone with my particular diagnosis also. I hope you continue to stay well. Take care. Kathy

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@tessa2

I will have to Google that diagnosis. I did make Mayo appt today. 12/29th is earliest they could give me. How long did you wait? Also, was your 1st appt a consultation only? Not sure if I will b getting tests that day. Do you go to Mayo for follow up appts? Wish I could hear from someone with my particular diagnosis also. I hope you continue to stay well. Take care. Kathy

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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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@raney

What is the name of your nebulizer. I am impressed if you can do 5 meds in 1 hour. I am looking at ways to cut my time spent nebbing down. Any suggestions will be appreciated.

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The nebulizer is Pari — and I heard about this from another person. I went on google and found a Pari store and called them. The lady was extremely helpful. I told her I wanted the fastest one she had and mine is Pro-Neb…… before finding this it took 2 hours for me to go through all five meds — if I get them all lined up and don't wash out between each one — it takes me only 55 minutes with this. At first I would get up and go wash out the mouthpiece and then I decided it was all going the same place anyway, and I quit that. So an hour is a long time, but it's much better than what I was doing. It was not expensive — for everything approximately $100 — more or less five dollars. i can't remember down to the penny. Believe me it was money well spent. If anyone comes up with a faster one, please post about it. It's important to those of us who have battled this for several years. Jan

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@auntnanny

The nebulizer is Pari — and I heard about this from another person. I went on google and found a Pari store and called them. The lady was extremely helpful. I told her I wanted the fastest one she had and mine is Pro-Neb…… before finding this it took 2 hours for me to go through all five meds — if I get them all lined up and don't wash out between each one — it takes me only 55 minutes with this. At first I would get up and go wash out the mouthpiece and then I decided it was all going the same place anyway, and I quit that. So an hour is a long time, but it's much better than what I was doing. It was not expensive — for everything approximately $100 — more or less five dollars. i can't remember down to the penny. Believe me it was money well spent. If anyone comes up with a faster one, please post about it. It's important to those of us who have battled this for several years. Jan

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That is the one that I have but it is taking me 3 hours for 2 meds and smart vest and aerobika huff coughs.
I also have to stop several times rinse mouth and gargle with salt water because of so much mucus. I have the nebulize hooked to the back of the aerobika I only do smart vest for 5 mins then nebulizer hooked to aerobika and huff coughs and I repeat this over and over until I can breath better.

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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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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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@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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