Young with OB

[Pokermon]

Hi are there any young people on here with Ob as have been told its not common in young people.

[christina1947]

Hi pokermon can I ask what is OB. Take care xxx

[Pokermon in reply to christina1947]

Oblititive bronculitus

[Caspiana]

Hello Pokermon Pokermon 👋 . I have Obliterative Bronchiolitis too (but I am not young) . There are a few of us here Katinka46 . We call ourselves the 🦓 zebras. 😅😀Welcome to our group. Why don't you tell us about your situation? When were you diagnosed? It's lovely to meet you.

Cas xx 🙋🐕

[Pokermon in reply to Caspiana]

Hi I had Steven Johnson sydrom when I was 14 and it affected my lungs left me with 25% so learning to live with it.

[Caspiana in reply to Pokermon]

I am so sorry Pokermon , you are indeed young , I am surprised you have not been asked to consider a lung transplant. I had a single transplant last summer. What treatment are you on currently? I see you have Stevens-Johnson syndrome. It's an autoimmune disease isn't it? And a horrible disease to have. 😞 I also have an autoimmune disease that ultimately attacked my lungs. I hope you come here often. It's important to get support and you will get loads of support here. 💕

Looking forward to hearing more about you and how you are coping. With love,

Cas xx 🙋🐕

[Pokermon in reply to Caspiana]

Hi it was horrible lost lots of skin from my hands and feet and all my nails very painful but got over it. Just have to get on with it have electric chair so can keep up with my friends as bit slow now lol

[Caspiana in reply to Pokermon]

I understand totally. How are they treating your OB? xx

[Pokermon in reply to Caspiana]

Azithromycin and cicesonid think I spelt them right.

[Caspiana in reply to Pokermon]

Please do keep in touch Pokermon . There's absolutely no need to worry alone. xx 👋😁

[Ern007 in reply to Caspiana]

I am no expert all all on this but I though "Stevens-Johnson syndrome." could be caused by medication, toxic fumes or after an infection. Not 100% but that is what I understood about this terrible complaint.

[Pokermon in reply to Ern007]

It was caused by amoxicilion and Ibrufen quite rare to lead to ob but hey oh it did.

[Ern007 in reply to Pokermon]

Pokermon - I did read that - Very unfortunate I hope it settles down.. Thank's for reply I live and learn and keep as well as you can do..

[Catlover432 in reply to Caspiana]

Cas. Why are we rare disease people called zebras? I didn’t think zebras were particularly rare.

Cat lover, with COP. )Cryptogenic organising pneumonia.)

I’ve met 2 people here with COP but there may be more

[Caspiana in reply to Catlover432]

It's really just for people with Obliterative Bronchiolitis Catlover432 . I believe Katinka46 coined the word describing us on this group because our disease is complicated and took ages to diagnose with lots of false starts. What is your treatment for COP ? And is it working? 🙋

[Catlover432 in reply to Caspiana]

Ah! COP is another ILD. It’s supposed in most cases to be curable. Diagnosis is one of exclude everything else first, a.though CT is relatively specific. The treatment is high dose steroids, then reduce fairly quickly based on X-ray. They did that for me last year ( I was very ill for about 8 weeks before diagnosis) but I quickly relapsed. I’ve been on 10mg prednisolone for the last 3 months, and am now reducing by 1mg for the next 3 months before my next X-ray. Then I think continue to reduce to 5mg and I’m not sure after that. You feel a bit like an experiment. I think everyone responds differently

I’m relatively OK now, so just wait and see. Of course the COVID 19 is a spanner in the works. My husbands immune systems not good, he’s no spleen and has a slightly dicky heard

PS The Americans call it BOOP Bronchiolitis obliterans organising pneumonia.

The pneumonia bit is a bit confusing as people think you have bacterial type pneumonia and it’s nothing to do with infection

[Katinka46 in reply to Catlover432]

Rare diseases are known as Zebras in the medical world because junior doctors were told: “If you hear the sound of hooves think horses not zebras.” ie Eliminate the common conditions before going down the rare route. But for that reason with doctors determined not to risk being thought to be naive and silly, zebras can take an age to diagnose. In my case it was four years to dx one (CTED) and another four years for the other one (OB). Hence my avatar. COP (previously known as BOOP) is definitely a Zebra.

All the best

Kate xx 🦓🦓🦓

[Catlover432 in reply to Katinka46]

Thank you. Katinka I never heard that before. 15-20 COP a year at my hospital. Not sure what the population of the catchment area is

Guess. I was lucky to just wait 8 weeks. Maybe it’s a bit easier to diagnosis. My CT suggested just 3 different diseases to chase

[Katinka46]

Welcome to this lovely group. You have had very difficult time and much to put up with. I hope you feel you are getting good advice and support from your doctors, your family and friends.

We can’t really advise you about college attendance, it depends on so many factors.

Look after yourself and take all the help you need.

Love from a fellow Zebra

Kate xxx 🦓🦓🦓

[Pokermon in reply to Katinka46]

Thanks nice to be able to talk to others ithat understand.

[meg167]

I have been told 'OB cannot be ruled out' but not absolutely confirmed. Im not young. I've had a terrible time in and out of hospital with various diagnosis, treated with large doses of steroids and aminophylline which led to diabetes and osteoporosis with compressed fractures, plus I picked up a couple of superbugs along the way so ended up more debilitated than when i started treatment and now having supplemental oxygen. Would like to link in with the zebras group

[Katinka46 in reply to meg167]

I keep replying to you Meg and I seem to touch something that deletes it. Grrr... I will try again on a different device.

Kate xxx 🦓

[meg167 in reply to Katinka46]

ok thanks Katinka46

[Laurenmerrin_xo]

hello, I was diagnosed with OB at the age of 21, I’m not almost 26, life is very hard and scary at times, here if you need a chat? X

[Pokermon]

Hi Nice to here from another young person the same as me as most of my lovely friends on here are wee bit older. My mum dealt with the doctors when I developed it so I don't know the full rundown but maybe that's for the good. I know it's not good but we just have to get on with it as no turning back . Stay safe.

[Laurenmerrin_xo]

I completely agree, just try and keep yourself safe, I get a cough all the time when I get a cold and just struggle with any illness in general due to my airways