hi new here

[Gingerninjas]

hi folks new to here .

I’m waiting for a possible diagnosis of Bronchiolitis obliterans … my current FEV1is 0.91…. On a recent Consultant letter she wrote “severe lung damage 😱 these numbers don’t mean much to me.

Of course I DrGoogled this condition… yikes .. now scared …

I have Asthma on top of my breathing issues !! Pollen is not helping.

I take Fostaire 200/6 twice a day , montelukast once a day and ventolin when required ….

Any one else out there going through similar things … Also any tips greatly appreciated.

Many thanks

[Patk1]

Welcome to the forum x

[Alberta56]

Welcome. I don't know what bronchiolitis obliterans is, but I don't think there is any need to worry too much until you've got a firm diagnosis. You are not the first person who has contacted this forum after reading worrying reports on Dr. Google, who seems to make a habit of telling people they are doomed to a life of misery and a speedy demise. Once you have a diagnosis there are plenty of sources of advice on how to stay as healthy as possible and to lead as full a life as possible. Including this forum, of course. We are a friendly lot and there are people here who've got every lung condition you can think of. I hope someone will be along soon who knows more about it than I do.

[Gingerninjas in reply to Alberta56]

thank you for your warm welcome .

It means the bronchioles are not working properly…and oxygen transfer is limited 😮‍💨

[doc1947g in reply to Gingerninjas]

Sound like EMPHYSEMA. I am Emphysema Gold Grade 3. FEV1 is around 0.90 to 0.95L/min. My O2sat goes from 92% down 79% during the night.

[Mellywelly]

A very big welcome to you. You are definitely in the right place. Everyone is so lovely here, helps just to chat 😀

[Ergendl]

Welcome. Glad you have joined our scattered alternative 'family'. Hoping your diagnosis doesn't prove to be as bad as you fear. Once you have the confirmed diagnosis, your doctors will be able to find treatments to help you live more fully. All the best.

[CDPO16]

Hi and welcome. I haven't got your lung disease but have fostair 200/6 for very severe emphysema. I have always been told to use the ventolin 10 to 15 minutes before the fostair to open up the airways so that the fostair gets deeper into my lungs. I use a spacer for both. Best wishes.

[Gingerninjas in reply to CDPO16]

Good idea Thank you

[DizzyLiz57]

I was diagnosed with Bronchiolitis Obliterans probably caused by Scleroderma last November. It is scary because it is so rare in this form in this country and there is v little information available. The most helpful info I have gleaned from my Respiratory Consultant is that medication can halt the progression (it has me, my lung function is the same now as it was then, 32%) and to protect yourself from infection as much as possible. She tells me I could live to 90! 😄

BTW if you should find a BO "expert" in the UK I'd be very interested to hear - I've not found one yet.

Take care and try not to worry. I try to make the best of each day and I've learned that prognoses are just statistical guesses really! 🤗

[Gingerninjas in reply to DizzyLiz57]

thank you Dizzy …. They think mine is secondary to sjogrens… autoimmune… .. like yours … thank you for your info … it helps for sure … I’m not normally one for groups and forums but something about this site appealed to me .

🙏

[Nula2]

Hi Gingerninjas 🙋‍♀️, I just wanted to say hi and welcome. This is a lovely forum, full of helpful, friendly and funny people. It has become an important part of my day (same for others too I think) and hopefully someone here will be able to help with your question. Take care 🙂xx

[Gingerninjas in reply to Nula2]

thanks Nula

[Izb1]

Hi Gingerninjas and welcome to the site. Can't help with your condition but there are some members with this who will be along shortly x

[Gingerninjas in reply to Izb1]

thanks

[Karenanne61]

Hi and welcome to this friendly, funny and informative forum. Ages ago OB appeared on my list of diagnoses (Very severe copd, bronchiectasis) but has since disappeared from the list! I hope someone comes along who can help.

[Musicqueen49]

Welcome Gingerninjas( lovethe name).This forum is super friendly and knowledgeable, whether you post regularly or now and again.

Take care

[Gingerninjas in reply to Musicqueen49]

My ninjas are now my avatars 😈

[Katinka46]

Hello Gingerninjas

I was eventually diagnosed with OB but it is complicated as I also have chronic thromboembolic disease. My OB is the fibrotic not the neutrophyllic version. It is relatively stable. It is a bit of a puzzle to doctors as to why the pulmonary emboli (PEs) damaged the small airways. In my case I believe it happened after the PEs seemed to cause bleeding for six weeks. It was diagnosed by a consultant at the Royal Brompton. There is a Facebook group if you would like to talk to others.

Welcome to this group, it is very friendly, informative and hugely supportive.

K xx

[Caspiana]

Hello there. I have this condition and had a single lung transplant in 2019 because of it. Mine is a manifestation of having Rhuemathoid Arthritis and Sjögren's syndrome. I think my lung function was similar to yours upon diagnosis. Bronchiolitis Obliterans does not respond to treatment, in fact there is no known treatment for it. For some it is a slow progression but for others it can be swift.

It's hard to offer tips but please ask questions if you have any. The best advice I can give you is to keep moving as much as you can. Walk!! even if it is hard , the more deconditioned one is, the less favourable the prognosis. Try and develop a good network of support. When I was first diagnosed up until my transplant four years later, I was lucky enough to have this forum that helped me through my darkest days.

You are not alone.

Cas xx 🙋‍♀️🐕

[Gingerninjas in reply to Caspiana]

Thank you Cas, this is proving a good find forum . It is an unfortunate name for a condition, my sense of humour thought of Cbo2 as like the Character from star wars ...which has vanished from my mind😄

What I don't understand is ,why do I maintain my state @ 96% if I'm struggling so much .

Ido go to the pool twice a week ,walk up and down, stairs are a nono, inclined are hard to,

I've leant tena ladies are a girl's best friend!!!

😂

[Caspiana in reply to Gingerninjas]

Hello again. Do you take your saturation levels when you are walking? Have you had a six minute walk test before? Are you on oxygen? One of the hallmarks of this disease is you really desaturate upon exertion but your numbers remain stable if you are not ambulatory . That is probably the one blessing. What have they suggested for long term care? Where do you go from here?

Pool walking is excellent. Before I got really sick I was an avid swimmer. But the doctor advised me to stop because of the chlorine that can irritate the lungs and public pools are not the most hygienic of places. 😑

I'm sorry I have so many questions. I am just trying to form a better picture of your situation. xx 🤗

[Gingerninjas in reply to Caspiana]

hi again Caspiana,

Not had 6 min walk test .

I’m not on oxygen .

Waiting the results of my latest Hrct scan so haven’t got a long term plan atm …

Strong smells normally set my asthma off , but this pool doesn’t .. think because it’s an olmpyic pool with high ceiling

I’m finding the air today very oppressive… at least it’s not ice cold with defrost spray in the air which is even worse .

Thanks for listening to me wittering on .

🐈🐈

[Caspiana in reply to Gingerninjas]

Yesterday in Tokyo it was 31° with humidity in the 70s. I struggle with the heat too. 😑 Please do keep in touch with the forum. I hope you get all the support you need from your medical team. xx

[Maricopa in reply to Caspiana]

I was looking to see a post from you as you are truly an expert in my opinion. And yes. This is very serious. Hopefully your input will be taken!!

[Caspiana in reply to Maricopa]

Hello Maricopa. I am not an expert 😅 but I suppose going through it all I know what it's like to be a newly diagnosed patient. I hope you are doing okay. xx ❤️

[Maricopa in reply to Caspiana]

You are well educated. Have experienced it yourself. Very intelligent. Listening to your advice and experience is a pretty advantageous idea.