Bronchiolitis obliterans aka Popcorn Lung

Posted by tonya1980 @tonya1980, Jan 1, 2020

Hello I am new. I was diagnosed with Bronchiolitis obliterans Aug 2018.
Its 2020 and I have to start some treatment. I didn’t realize how serious this was. I had a breakdown and now I am ready to deal with it. My breathing is getting worse. Wheezing and woke up last night couldnt breathe. I just told my mom and brother a few days ago. I am only 39. I am scared.

Anyone else out there with breathing problems?
I am in midwest. Is it better to go down south for winter? I was looking for places to get treatment. Not alot of info. There is a stem cell place in Tampa. I just dont know what to do.

Good morning @tonya1980 I am so sorry to hear that you are having such problems but you’ve come to the right place. We’re a community that shares support, information, and experiences of our health journeys. I’m going to ask our moderator to move your posting to the lung health group that is already talking about bronchiolitis obliterans.
Have you seen a doctor since your initial diagnosis? What did the doctor say? What happened that made you suddenly feel that you had a serious condition?

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@becsbuddy

Good morning @tonya1980 I am so sorry to hear that you are having such problems but you’ve come to the right place. We’re a community that shares support, information, and experiences of our health journeys. I’m going to ask our moderator to move your posting to the lung health group that is already talking about bronchiolitis obliterans.
Have you seen a doctor since your initial diagnosis? What did the doctor say? What happened that made you suddenly feel that you had a serious condition?

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Need to see a doctor. May have been an anxiety attack which makes it very difficult to breathe.

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@tonya1980 I am glad you have reached out. I only have my impression, but I think you feel panic and are not thinking calmly and clearly. Yes, I believe this is a potentially dangerous condition, but I also believe that there are many treatments available to ease both your daily living and your anxiety. Please see a pulmonologist (lung doctor) as soon as possible. You might need to go through your primary physician for a referral, but I believe the sooner, the better for you

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I have a lug issue as well. Diagnosed with IPF a year ago, I can understand how scary it is to hear the diagnosis for the first time. IPF is incurable. The folks at MAYO were helpful but, were only able to confirm what my regular provider said. After receiving the news, I went on line to see what the rest of the world had to say. I think you will have to take some time to come to terms with your condition. Like me, you have some options available and should take advantage of any resources you can find. I have found research is being done in all sorts of places, and some with promising results. Regardless, I had to come to terms with the current state of things. I hope you do well in your journey.

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I have had problems for 40 years reacting to chemicals, mold, etc. Over the last 15 years I started to have a lot of problems with burning leaves, wood fires–developing chest pain and sometimes breathing problems. Nov. 2020–I was exposed to burning and mold in the same week. After 4 days of coughing, chest pain, extreme fatigue and hardly able to eat I ended up in the hospital in critical care for 45 min. with a heart rate of 250-287.To shorten the story-next day I was found to have serious wheezing, and fluid around the heart and pleura effusion around both lungs. In Jan. and Feb fluid was drained and found to have high levels of allergic cells. After lung bio-March– it was found I had Bronchiolitis obliterans. I am losing faith in help and knowing what else I can do. My pulmonary Dr. just moved away. Does anyone specialize in this disease? I have been avoiding chemicals in my home for 32 years, but I can hardly go outside these days.

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@ladymacb

I have had problems for 40 years reacting to chemicals, mold, etc. Over the last 15 years I started to have a lot of problems with burning leaves, wood fires–developing chest pain and sometimes breathing problems. Nov. 2020–I was exposed to burning and mold in the same week. After 4 days of coughing, chest pain, extreme fatigue and hardly able to eat I ended up in the hospital in critical care for 45 min. with a heart rate of 250-287.To shorten the story-next day I was found to have serious wheezing, and fluid around the heart and pleura effusion around both lungs. In Jan. and Feb fluid was drained and found to have high levels of allergic cells. After lung bio-March– it was found I had Bronchiolitis obliterans. I am losing faith in help and knowing what else I can do. My pulmonary Dr. just moved away. Does anyone specialize in this disease? I have been avoiding chemicals in my home for 32 years, but I can hardly go outside these days.

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Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

After not seeing any discussions about pulmonary fibrosis for some time, we have heard from 2 people in just 2 days – here is the link to my reply yesterday, with some resources for you:
https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/?pg=3#comment-626657
You may want to use the Mayo link to contact them about an appointment: http://mayocl.in/1mtmR63

Please let me know how you fare in finding an experienced doctor.
Sue

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I have RA, Sjogren’s Syndrome, and MCTD. Recently diagnosed with bronchiolitis obliterans. Have had increasing soboe for about a year. On RA meds, now also on FAM therapy. 78 y.o., and wondering about long term prognosis, life expectancy. Thanks.

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@carol01

I have RA, Sjogren’s Syndrome, and MCTD. Recently diagnosed with bronchiolitis obliterans. Have had increasing soboe for about a year. On RA meds, now also on FAM therapy. 78 y.o., and wondering about long term prognosis, life expectancy. Thanks.

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Hello @carol01 and welcome to Mayo Clinic Connect. Thank you for joining the discussion and sharing a brief background on your history. I would start by asking you what your doctor has shared with you on this topic? How long have you been living with these diagnoses?

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Have had RA &Sjogren’s since 2003. On MTX and lo dose PRED since then. Follicular lymphoma 2015. Had chemo x 2, got PE’s, came off chemo and onto other meds. Now on IV Ig every 8 weeks and in remission. Started with severe soboe about a year ago. Finally diagnosed with BO after a couple of ER visits, pneumonia, etc. Docs have not shared prognosis with me altho, as a nurse and after much research, I know it will get worse. Seeing a doc from the ILD clinic next week.. thanks..

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I have been in constant anxiety attack from the moment I wake up until I go to bed at night. Also suffering with very vivid dreams of the past. I am on anxiety meds but they do not seem to help. My first bout with this was nine months ago and lasted for 3 mos. Went into chronic pain when the attacks stopped. Now, I have the panic attack again and has lasted (so far) for a month. These attacks are debilitating and not sure what to do anymore. Any help or feedback would be very much appreciated. Thank you.

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