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Chronic Hypersensitivity Pneumonitis

Chris3 profile image
28 Replies

I'm new to this site and I've finally plucked up the courage to write something!

I was diagnosed two and a half years ago with chronic hypersensitivity Pneumonitis with fibrosis. Tests were unable to identify the culprit mould/spore thus making it difficult to avoid. Steroids had kept me well till last autumn but am on the way up again. Strong suspicion the problem is at work. Anyone else out there with the same condition? Chris

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28 Replies
squeeza profile image
squeeza

Hi Chris. It must be a day for it, as I posted for the first time today too. Welcome.

Cant help with any info on your condition as I have COPD but contact BLF nurses they will be able to help.

Anyway welcome from one Newbie to another.

Teresa ;)

Chris3 profile image
Chris3

Thank you! I've never blogged before!

squeeza profile image
squeeza in reply toChris3

Neither have I. Been reading bits on here for a little while but only plucked up the courage to write something today.

Heres the number for the BLF nurses 03000030555.

Take care

Teresa x

peege profile image
peege in reply tosqueeza

Welcome squeeza and chris3 - and bravo for your blogs!

I'm sorry I know nothing about your condition Chris3, I'm waiting for a diagnosis myself. However, I understand that the blf helpline is excellent - trying to pluck up the courage to call them myself.

All the best to you both. P

Welcome newbies. Feel at home. You are safe with us lot! So dont feel nervous. All you need to do is to relax and unload any worries. Bye annieseed xx

hi Chris, I wanted to welcome you even though I don't have your condition, I have emphysema and asthma. but squeeza is a wise newbie - she is right about giving the BLF helpline a call - I have heard they are very helpful you can reach them on weekdays on 03000 030 555

Anna :)

in reply to

should have added 10am to 6pm

squeeza profile image
squeeza

Thanks psorias it was advice given to me earlier. ;)

Teresa

in reply tosqueeza

hey you live near me :)

squeeza profile image
squeeza in reply to

Well what a small world. ;)

hufferpuffer profile image
hufferpuffer

Hello Chris welcome to the site, I hope you get some info from someone, I think I might know someone else with your illness on a different site, I will see what I can learn about it, if you dont mind me asking, what is the work you do? huff :) x

Hi Chris3, and welcome to this wonderfully funny and knowledgeable site. :)

Chris3 profile image
Chris3

Thanks for the welcome everyone. Very much appreciated. I work in an old school.

KingoftheCocktails profile image
KingoftheCocktails

Welcome chris3.I don't do medication but I try to give out a daily dose of humour.

Please read my KOTC Humour show blogs

Your daily tonic

scrobbitty profile image
scrobbitty

Hiya Chris and welcome :) Well done on your first blog !

Welcome to the site Chris.A lovely friendly place with lovely friendly people. I cannot help with your lung condition as I have bronciectasis, but like others wanted to welcome you. I hope that you get your answers best wishes Julie

appyalison profile image
appyalison

Hi Chris, I have only been here for few days. Wanting proper diagnosis. 5 weeks since VATS wedge resection. 2 weeks since I was told I have serious lung disease but they have no idea what it is! They mentioned just monitoring. I may have the same as you - who knows? I too am summing up the courage to ring BLF helpline. Incidentally, I worked a lot in old schools. Welcome aboard for some fun and education. Good luck, Alison

Chris3 profile image
Chris3

Good morning everyone! The sun is shining here today and what a difference that makes. I'm with you all the way on the humour front, it really helps. My father had IPF and was cracking jokes with his last breath. Still makes me smile. Hope I've inherited some of that too and not just some faulty gene! It was a VATS that gave them my diagnosis but they were unable to identify the culprit at that time. I work in different schools and my consultant is now very confident that it is in one of them. Now need to persuade my bosses to redeploy me. I've been off work since Christmas but am now ready to return to the classroom, I think/hope!

appyalison profile image
appyalison in reply toChris3

Hi Chris, I gave teaching full time when I ended up bringing up granddaughter full time. I had to do supply and went to so many different schools, mostly Victorian and in various stages of dilapidation. No chance of being well enough to go back, sadly. Oh well, would not change husband or granddaughter for anything.:-) Alison

Chris3 profile image
Chris3 in reply toappyalison

I thought I had sent a reply to this but must have hit the wrong button! I do hope you haven't got too long to wait for a diagnosis. It 's so much easier to cope with when you have a name and know what you are dealing with. My diagnosis came within days of my VATS and I've been on varying doses of steroids since.

gerry1950 profile image
gerry1950

I was diagnosed after lung biopsy in dec 2009 not chronic just HP Iretired from work in june2011.I was an engineer after sometime and using my union legal service they think it is metal cutting fluid that caused my problem . It's a long story.Through the union we are take my employer to court it's a long process but its kept me going are you in a trade union hope this information helps gerry1950 I new to this site myself I don't know if I allowed to give my phone number someone will tell me bye

Puffthemagicdragon profile image
Puffthemagicdragon in reply togerry1950

If it's by PM then I would think it is up to you.

Chris3 profile image
Chris3 in reply togerry1950

Luckily I am in a union. They have said today that the next step is to ask for a risk assessment and air sampling. It is hard enough battling with this blasted disease but when you have to take on our employers as well you wonder if it is worth while. It would be good to chat.

gerry1950 profile image
gerry1950 in reply toChris3

Hi chris 3 The health and safety executive and RIDDOR should have been informed of your condition if there is any reason to think your illness is work related try google talk with someone that deals with health/safety issues in the union you could also contact the HSE and RIDDOR yourself I think it is worth while there are a lot of people and information out wait to help you it would be good to talk

Puffthemagicdragon profile image
Puffthemagicdragon

Hi and Welcome squeeza and chris3 ! :)

budleigh4 profile image
budleigh4

Nice to get I touch

Did you ever take Azathioprine

My condition seems to have flared up withouth any reason over the last two weeks

Did you have same

Regards

Chris3 profile image
Chris3

No, I was only ever on prednisolone.

I too had flare ups and the steroids would go up. Down they'd come to the next one.

They haven't been able to pin point culprit.

I've had one pulse of cyclophosphamide, 5 to go hopefully.

jane5 profile image
jane5

hi Chris I've got hp and they have just found some lung deterioration jane

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