Obliterative Bronchiolitis (OB) vs. ILD or CLD?

Posted by jamiet @jamiet, Jul 4, 2018

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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cognac | @cognac | Jul 7, 2018

@jamiet, hello. I've not been given this diagnosis in so many words, but the numbers from my spirometer test indicate I'm on the verge. May I ask what your numbers are? My FVC is 96, the FEVI is 87, but the DLCO 20. My doctor prescribed an Albuterol inhaler. My diagnosis has been changed so many times by so many different doctors that one more won't really matter at this point. I'm short of breath with just about any exertion. Take care, and please let me hear from you.

jamiet | @jamiet | Jul 25, 2018

I have been diagnosed with Obliterative Bronchiolitis or Bronchiolitis Obliterans. I hear people also using the terms Interstitial Lung Disease and Constrictive Lung Disease, interchanging them when talking about the same illness.

Does anyone know if, for instance:
- OB is a type of ILD or CLD (or vice versa); or
- OB and ILD and CLD are all the exact same thing, different doctors just use different terms; or
- OB and ILD and CLD do share some similar characteristics (if so, what?), but they are all distinct and different diseases; or
- OB, ILD and CLD are all completely different, and I just stumbled upon people who didn’t know better. (And, if you can explain the difference, you get TWO gold stars).

For that matter, is Pulmonary Fibrosis the same as any of the above?

Thanks.

Colleen Young, Connect Director | @colleenyoung | Jul 25, 2018

Hi @jamiet
My understanding is that Interstitial lung disease (ILD) is a general category that includes many different lung conditions all marked by inflammation and scarring. See this article from WebMD https://www.webmd.com/lung/interstitial-lung-disease#1

Bronchiolitis Obliterans, now referred to as Cryptogenic organizing pneumonia (COP), is an interstitial lung disease. https://www.mayoclinic.org/cryptogenic-organizing-pneumonia-cop/expert-answers/faq-20057840

Here is an explanation about the difference between Restrictive vs. Obstructive Lung Disease https://www.webmd.com/lung/obstructive-and-restrictive-lung-disease#1

I'd like to connect you with @sneakerss another member diagnosed with COP who started this discussion
- COP (Cryptogenic Organizing Pneumonia) https://connect.mayoclinic.org/discussion/cop/

Jamie, what treatment are you on (if any)?

dgtparrish | @dgtparrish | Dec 12, 2018

Hi @jamiet ,

I have recently been diagnosed with Rheumatoid Arthritis-Bronchiolitis Obliterans. I started noticing being short of breath about 10 months ago and joint swelling about a year ago. I was diagnosed with RA in April and Bronchiolitis Obliterans in September after a Lung biopsy. I have been prescribed Azithromycin, Mycophenolate, and Dapsone. It is helping to decrease the progression of this disease. I do get very short of breath with mild exertion. This has been difficult for me because I was a very active in all kinds of strenuous activity. My doctor has told me I may have to have a lung transplant in the future. It is a rare disease but you are not alone.
Take care

tonya1980 | @tonya1980 | Jan 1, 2020

I was diagnosed Aug 2018 with Bronchiolitis obliterans. I vaped e cigs for about 4.5 years prior. I stopped vaping. I have not got any treatment. I had a mental break due to harassment at work and my breathing is getting worse and everyone asked how I got my SSDI so fast. I guess with all the retaliation going on at the Post Office and the EEO crap I just didnt deal with it. I cant keep acting like im ok. I need to get help. I resigned from USPS in April and I have no insurance. I just told my mom and family a few days ago. Im only 39. I have been wheezing very bad and even woke up last night from it. I am scared. I would like to talk to someone else who also has this OB aka popcorn lung or Bronchiolitis obliterans ( BO )
I have not had a lung transplant.
I am too scared to let them. I had a ct scan w contrast aug 2018 then they diagnosed me. It would be nice to make friends with someone going through the same.

trtrenck | @trtrenck | Jun 1, 2021

In reply to @tonya1980 "I was diagnosed Aug 2018 with Bronchiolitis obliterans. I vaped e cigs for about 4.5 years..." + (show)

I would love to be friends and talk about our different lung issues. I was diagnosed with COP in 2018 after several bouts of pneumonia. Had to have one lung drained from a pleural effusion. Also grew up with asthma. Then last year I got very short of breath. Doctor did full range of lung tests, blood tests and a lung biopsy. Initially told my ANA was very high but other lupus markers were negative. Was told I have Interstitial Lung Disease, and COPD-Emphysema. Lung biopsy did show the ILD was dormant, leftover injury from radiation (recurrent breast cancer on the chest wall). And yet, most of the time I seem ok???
So, those are the diagnoses. Mull that over and get in touch when you have some time we can chat. You can also text me directly if you want to go that route, let me know.

Colleen Young, Connect Director | @colleenyoung | Jun 4, 2021

In reply to @trtrenck "I would love to be friends and talk about our different lung issues. I was diagnosed..." + (show)

@trtrenck, welcome to the Lung Health group. What treatment, if any, are you on? Are you on oxygen?

zoelife | @zoelife | Jul 1, 2021

Good info and questions. I may be able to provide some input also....

jmunderhi | @jmunderhi | Sep 19, 2021

Anyone start out with normal lung function and have bad symptoms and then not find out for years what was wrong?

trtrenck | @trtrenck | Sep 20, 2021

In reply to @colleenyoung "@trtrenck, welcome to the Lung Health group. What treatment, if any, are you on? Are you..." + (show)

Steroid inhalers is all right now. But I just got a new CT that said ILD at the top of my lung also.

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