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Obliterative Bronchiolitis (OB) vs. ILD or CLD?
I have been diagnosed with Obliterative Bronchiolitis (aka Bronchiolitis Obliterans) along with a long list of other diseases (Rheumatoid Arthritis, Chronic Hypoxemic Respiratory Failure, Collagen Vascular Disease, Fibromyalgia, Gastroparesis, Sjogren’s Syndrome and more). I lived and worked with the RA, Fibro for 16 years before I started have lung problems and was ultimately diagnosed with OB after going through many tests and months on HUUUUUUGE doses of steroids.
I never smoked a day in my life, so getting a lung issues was a huge surprise. I later found out this incurable, irreversible, rare lung disease can be triggered by RA, gastrointestinal issues, Sjogren’s Syndrome OR possibly even the medicine used to treat RA. Basically, my body is not processing oxygen (pulling O2 out of what I inhale) and getting that oxygen into the blood and to my organs/brain. This disease is on the Social Security Administration’s Compassionate Allowance List of conditions considered serious enough that disability claims are expedited and decided in three weeks.
The thing is I can’t find other people diagnosed with this disease. I did a key word search on this forum. I’ve searched other forums. I’ve searched websites listing clinical trials and research being done by hospitals, etc. The very few clinical trials I’ve found have all been for someone who gets the disease because of complications after a lung transplant. I haven’t found any non-transplant adults diagnosed with the disease.
I thought I’d throw it out to see if there is anyone else with the same diagnosis or anyone even familiar with the disease so we could share info, history, tips, etc.
Thanks ......
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Can I ask if anyone with constrictive bronchiolitis has ever experienced any of the following??
1. difficulty swallowing spit and/or feeling like your throat is often tight or swollen
2. chest pain that comes and goes
3. getting a better deep breath when standing up from a chair, out of a car, or certain body positions. like just on the next breath it's better, but not after that.
4. feel best just before getting out of bed in the morning
5. Or bubbling and popping in the rib cage
Good questions, Jmunderhi. I’m hoping @trtrenck @zoelife @tonya1980 and @jamiet might have some input.
It’s encouraging to hear that you have moments where your breathing or a breathe is better, liking standing up from a chair or feeling good before getting out of bed in the morning. Have you considered pulmonary rehab exercises? I wonder if they might help to increase or reproduce the situations where you feel good to happen more often?
Thanks. Along with those symptoms I also have lots of sensations in my ribs and chest. Feels like there’s always something going on. Bubbling, rippling, popping. The wallowing issues could be unrelated, but the best before getting out of bed and getting a better breath after getting up from a chair, stepping into the house from steps, etc help at times. I am completely out of breath with exertion, but at rest the above acts help.
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1 ReactionCan I ask how the biopsy went in terms of pain and recovery? Was it VATs?
I was diagnosed 3.5 years ago. I have never had a lung transplant. It has shown up in 5 lobes. I have lymph nodes that come and go. I have been tested for RA and am negative. I am sob, wheeze lots in the morning I have yellow phlegm. I was on a recalled cpap machine which could be the culprit. My pulmonologist wants to refer me to another pulmonologist at the Mayo Clinic. I am on Advair and a nebulizer. I did smoke when I was very young but have not had any cigarettes since 1989. I get concerned thinking about not being able to breathe in the future. It has been a taxing 3.5 years.
Welcome @dmcress54. Have you replaced your CPAP machine? Were you referred to a Mayo pulmonologist?
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2 ReactionsI had a sleep study 4 weeks ago and am still waiting on my results.
Dr. Vincent Lem, a pulmonary MD in Kansas City, MO wanted me to go to one of his friends at the Mayo Clinic. I am on the fence because I really don't know what that would accomplish. I use an inhaler and use a nebulizer. I will not use steroids because of the side effects.
If you have any suggestions, please advise.
Dianna Cress
I was also diagnosed with bronchitis obliterans about 6-7 years ago. No idea how I got it. Ended up having a double lung transplant at Mayo ( Rochester) in 2019. Be happy to chat more with you if you’re interested.
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1 Reaction@dmcress54, I might suggest you ask your pulmonologist, Dr. Lem, why he recommends your going to Mayo Clinic. He probably has a specific reason and has confidence that Mayo can help.
By the way, Mayo Clinic in Rochester, Minn., and Mayo Clinic in Phoenix/Scottsdale, Ariz., are ranked among the Best Hospitals for pulmonology by U.S. News and World Report.
@krsunny1, great to hear about success stories, especially double lung transplants!
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