Connect
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 ......
Like
Helpful
HugInterested in more discussions like this? Go to the Lung Health Support Group.
Connect
starting to think I have BO and have mostly normal spirometry with decreased FEF 25-75 levels that seem to continue to drop. Any update on how you are doing?
It seems like the main symptom is SOB. I have SOB as of the past 2 months and wheezing on forced exhalation sounding like a 'deflating balloon.' Cough really only comes after eating food. SOB comes on exertion, like walking up a flight of stairs, and random&rapid involuntary inhalations through nose while at rest as well. Doctor says spirometry is 'mostly normal,' but I have seen a consistent decline in FEF 25-75 values over the past couple months. Any chance this could be something other than BO - I vaped thc/nicotine heavily for 4 years.
Also do those with BO get relief from taking inhaler/steroids, or is it mainly to just prevent further damage as best you can?
I get HRCT next Tuesday, actually. Have you had HRCT? What makes you suspect BO? Any underlying issues? You should join the bronchiolitis Facebook group. My Facebook name is "Mike Hill". We could connect more on there.
Hello. I have just been diagnosed with bronchiolitis obliterans. I also have never smoked. I have fibromyalgia, and also what my rheumatologist calls undifferentiated connective tissue disease. I started with issues after a major fungal infection of the lungs. However the shortness of breath and fatigue I now have and current lung damage is new in the last 8 months. I am wondering if anyone knows how, or if you can get pulmonary rehab for this. My pulmonologist says there is a long waiting list and he's unsure if my diagnosis would qualify. Thanks for any help.
Hi, Mike
I see your text to alex00. I have had the HRCT and BO is what is is showing. I have asthma, have had it for at least 15 years. This year I went for pulmonary function test and it was about the same as last year, but I said, that can't be right. I am so short of breath and unable do all the things I was doing before the beginning of this year. And the fatigue is overwhelming. Walking any distance is out, just running the vacuum cleaner has to be portioned into stops and starts. So they said - well you have asthma and if your lungs are inflamed from it, it's normal to have some shortness of breath. Your oxygen looks good. But we can do the 6 minute walk and your oxygen should be fine and it will show it's the asthma. We got to the end of the hall and my oxygen had dropped from 97 to 87. They sat me down and then re-walked and this time 83. Then we waited and tried it with oxygen. All was fine. I was sent home with portable oxygen and sent for CT scan the next day because it could have been a blood clot. The long and short of it, after a bunch of tests and scans, is BO. If Alex is going for an HRCT, it will show clearly anything and everything that might be happening. And I will see if I can find the bronchiolitis Facebook page. Thanks for that info. Jean
Hi! I'm a 47YO female who has never smoked, vaped, or inhaled toxic fumes. About 3 years ago, I started coughing. I was told it was allergies but after the cough continued, I went to an allergist. Although I've never has asthma, we did try 3 different inhalers to no avail- Trelegy, Spiriva, & Breo . Finally, I was sent to see a pulmonologist & he sent me in for a PFT. The FEV/FVC1 score indicated that my lung function was 31% predicted. My pulmonologist told me that she suspects bronchiolitis obliterans. I've had my chronic cough for nearly three years. Now I get shortness of breath with very little exertion, fatigue (which also feels chronic at times), & I'm losing weight. I started azithromycin in late March.
The quest to get a final diagnosis has been overwhelming. In about 2 weeks, I'm going to an interstitial lung center where she referred me for a 2nd opinion. Part of my story is that I was referred to a lung transplant team about 2 months ago, and even though they deemed it's too early for a transplant, one of the specialists showed me the air trapping in my lungs that is compressing my diaphragm. And I was told that it's not a need for more oxygen causing my SOB, it's air trapping.
My oxygen saturation never drops. It remains consistently around 98-100. I started rehab about 2.5 months ago. I was going 2x a week but because of my fatigue, and the fact that I'm losing weight, I've started going just once a week. I eat cough drops all day, every day to help my cough & to help me clear my lungs. Sometimes I cough so hard that I get a brief headache.
Other times, I cough so hard until I gagged, spit up a bit, & just get totally wiped out. I'd like to connect with others who've had a similar experience, learn what the process of getting a diagnosis has been like for you, & learn more about the symptoms you have.
My pulmonologist wants me to get a surgical biopsy to determine pathology. But because I live in an area where there isn't a specialist who can perform the procedure, I'm left to get a biopsy at one of the three medical universities she's referred me to. And I'm hoping one of them will. The ILC does conduct surgical biopsies. Apparently, the obstruction is so severe that I can't get a typical bronchoscopy. I have to get one that is a bit more extensive. Can anyone relate? Does anyone have any thoughts on whether my symptoms sound similar to those who also have BO. Thanks for considering.
Your symptoms sound like just what I have been going through with my COPD! Sometimes I cough so much and get so weak! I would certainly entertain and suggest that you seek evaluation/treatment at a high level of care facility. Not sure where you live but the healthcare facilities I would consider are Vanderbilt, John Hopkins, Duke, UNC, Also, do some research into Zephyr Valves (these will address the O2 trapping). You mentioned ILC, where and what is that. And am not sure about the comment that it's "too soon" for a lung transplant. You definitely could benefit from an in-depth evaluation from a large pulmonary program that has a large and diverse Pulmonary Team.