help

[annie1969]

hi there , this is my first post on here i have had a lung problem for 15 years now and i have been past from pill to post 2013 i was in icu after stopping breathing twince in 24 hours i have lived on steriods and antiboic and loads of inhalers i went yesterday to my specialist at the hospital and he told me i have obliterative bronchiolitis what is this ??? and do i need to be worrid thanks

[Hidden]

Hi Annie nice to meet you and welcome to the site. I can't help with your query I'm afraid but just wanted to say hi. There is every lung disease under the sun on here so I am sure others will be in shortly who can help. Hugs xx

[annie1969 in reply to Hidden]

thank you x

[AmethystAngel]

Unable to help but welcome to the site 😃

[Hidden]

Hello -nice to meet you. I am sorry I can't help but the helpline might be able to. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. Lots of love TAD xxx

[Jessy11]

Hi Annie, a very warm welcome to you.

I don't have your condition but I know some members do, so they'll probably come on & chat to you.

Did you not ask your consultant yesterday about his diagnosis?

If you need advice, give BLF a ring or make an appointment with your GP, who should have the specialist's report.

Take care 🌺

[annie1969]

thank the hospital told me to google it lol but i am going to see my nurse i am sure she will help me x

[Minushabens]

Crikey; if the best the modern NHS can offer is "Google it" then you start to wonder...

Anyway I did Google it (as I've never heard of it) & it seems like it is often caused by industrial or environental factors & can be quite serious, so I definitely would take the advice others have offered & either ring the helpline or make some time to talk everything through with your GP or a nurse.

Hopefully others here will be able to offer you something more substantial as well.

[knitter]

Hi Annie, if you type obliterative bronchiolitis into the search box in the right hand corner of this page there are some older posts about the condition.

I hope this helps....together with ringing the BLF helpline

Take care

[grannyjan]

Welcome Annie, hope somebody can give you some advice, but we are also here to give you moral support, and hopefully a few laughs along the way. Take care. janx

[rubyred777]

Hi Annie

Just want to welcome you to the site.

Hope you find the answers your looking for. Looking at the older posts, is a good idea. I do that a lot. We're all here for you.😊

Rubyxx 😊

[SquirrelsHolt]

Hi there Annie1969 and welcome to HU. If you wanted to get a professional opinion you can always call the BLF helpline as I've been told many thousands of times that they are brilliant and explain everything. Good luck.

[kimmy59]

Welcome to the forum, great advice as usual hope you find some answers.

Kim xx

[Katinka46]

Hi Annie, yes, I do know about OB. I do not yet know if I have it. But it is looking very like it. It is a fibrotic condition, (scarring) that affects the bronchioles, I.e. the small airways (SAD). It is usually caused by inhaling something toxic which results in injury to the SAD. After which there is sudden onset of an obstructive lung disease. It is diagnosed by pulmonary function tests that show an obstructive disease, airtrapping, hyperinflation, and should be confirmed by a High Resolution CT scan (HRCT) which will show airtrapping. The HRCT should be performed with full inspiration and full forced expiration. (Mine wasn't which has caused problems, and led to second opinions on second opinions!!) If it has been diagnosed you need help advice and support, and the consultant should not have just thrown it at you, and expected you to take it in. Sometime this condition will respond to corticosteroids. But only if there is inflammation. It can be relatively stable.

I am very keen to know how things develop for you.

Love and very sympathetic hugs

Kate xxx

[Katinka46]

P.S. There is a site on Health Unlocked for people with OB, it's called Breathtakers, but it's a support group that focuses on children with it, and the patient forum is very inactive. I did make contact with someone who has OB, and we have had a lot of very helpful email exchanges. He is coping well, has had it for 9 years.

Was there an occasion/event/damage/injury that seemed to trigger your first attack?

Please contact me via PM, if you want to.

Kate x

[freefaller]

That is just what I had when diagnosed with Bronchiectasis 5 years ago.

Welcome to the site hope you get some good advice and help from your GP.

Take care,

Sian

Xoxoxo