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jamiet
@jamiet

Posts: 2
Joined: Jul 04, 2018

Obliterative Bronchiolitis (OB) v. ILD or CLD???

Posted by @jamiet, Wed, Jul 4 4:21pm

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 ……

REPLY

@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.

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.

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)?

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

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