Obliterative bronchiolitis

[Laurenmerrin_xo]

Can someone please get in contact if they have obliterative bronchiolitis as I have recently been diagnosed but not been told much about this condition or how it will effect my life, thank you x

[Caspiana]

Me. I have BO too. Diagnosed a year ago. I have rhuematoid arthritis and BO is a manifestation of it. There isn't many of us. There is another member here with BO. Ours is a rare condition indeed. Hang in there and feel free to IM me. 

Hugs. 

Cas xx

[Laurenmerrin_xo]

Hey, thank you for your reply, I've sent you a message xx

[Katinka46]

Hello Laurenmerrin.

I too have OB. Check out my profile for a bit more about my story. The posting "Diagnosis... Almost..." tells how I got - more or less - my diagnosis. I see that Caspiana has been in touch too.  We need to stick together, we are rare creatures. I know a bit about it and would very much like you to share your story.  In my case it all stemmed from pulmonary embolism, (blood clots in the lungs) that caused permanent blockages in the blood vessels in my lungs and (very unusually) caused damage to the small airways.  Been a nightmare getting both diagnoses.  If you are interested look up my posts by going to my profile.  I am probably much older than you, I'm 69. 

I am very happy to be in touch via the messaging service from this site. 

Looking forward to hearing more,

All the best

Kate xxx

[Laurenmerrin_xo in reply to Katinka46]

Thank you so much for getting in touch, please send me a message as I was only diagnosed a week or so ago and need all the help I can get as my own doctor had to google it as he hadn't heard of it and my specialist hospital didn't help me atall! 

I am quite young to be suffering I'm only 21  

Thanks Lauren xx

[Katinka46]

Message sent

K x

[Hidden]

Hey Kate and Caspiana and Lauren again, I too have suspected BO. I refused the lung biopsy last year as I had a 4 month old baby at the time. My lung function has stabilised since then but good to see others here in same boat. It's a very lonely scary place 

[Caspiana in reply to Hidden]

Hello. I'm sorry to hear about your BO. How are you doing now? 

[Katinka46 in reply to Hidden]

Hi nFanning.  I remember you from your first post. I am so glad that you lung function is stable. And you are quite right to resist the biopsy.  my consultants won't do it as they feel it is too risky.

How is your baby?

Do let us know more abut how things are, as I said to the other two we need to stick together. It is a very difficult disease. You all have youth on your side, I am 69. But, on the other hand, it does mean that I have no dependents. Just a lovely family, and a really, really supportive husband. 

I hope you are getting the right support from doctors, hospitals, nurses.  Because it is so unusual/rare it is difficult to find people who understand what it is all about.

Love and hugs

Kate xxx

[Wheezy19543]

Hi guys

I am 20 years old and have had this from birth! I can tell you everything you need to know about this if you like I have lived with it for 20 years and can tell you any info you'd like to know

[Para1471]

Hi.

I see these posts are a few months old now but wondered if anyone is still active. A family member was diagnosed with bronchiolitis obliterans (which I presume is similar if not the same as obliterative bronchiolitis) in July. Since then there has been very little support really - she's on all kinds of medications, was meant to be reviewed in October but is still awaiting an appointment, is meant to be awaiting intravenous steroids but that doesn't seem to be happening either. She is now feeling very fed up, watching her condition worsen with just family and friends to support. If she had cancer there would be a McMillan nurse to support; is there anyone who provides this sort of service for her condition?

[mrsmummy in reply to Para1471]

Hi Para, this may be seen but I would advise you 'copy and paste' it into a new post. Click on "Write a post" above (top right).

[Lynnelovessunshine]

I have joined the rare OB club!!! Happy to share and swap coping strategies!!!!

I don't like my illness but learning to live with it!!!!!

Love to all

Lynne

[MikeJM]

This is an old thread. Anyone still on the his forum? Curious how you’re doing. Anyone get this from toxic fumes or Gerd?