Rare Lung Disease!

[4evaalways]

Hi i'm new to the community, i have recently been diagnosed with a rare lung disease. I have Alveola Heamorrage ( if spelt correctly) and i was just wondering if there is anyone else out there with it. Im really scared of what ive read on the internet and when i went to see the specialist at The Royal Brompton Hospital in London, I wasnt put at ease either. Im very much aware that it is a terminal disease and the prognosis is between 12 months to 5 years. Ive been put on steroids of which i wa in hospital for, for the first 3 days as it was really high doses but since being on these i have been feeling terrible and putting on a lot of weight, all of which doesnt help my breathlessness. Anyway, i thought i would just try and reach out to see if anyone on here has got the same or similar. Thanks for your time

[Hidden]

Hi 4evaalways

Welcome to the forum 🌸

Sorry I don’t know about your rare disease..you are in good hands at RBH.

I wouldn’t worry about prognosis..I should have died of lymphangioleiomyomatosis 10 years after the onset of symptoms but I am still alive and kicking!

I am also on steroids, I know what you mean about side effects. Do phone the helpline and see what they can advise until you can talk to your doctor again.

Wishing you well xx

[mrsmummy in reply to Hidden]

03000 030 555 - office hours.

[Angep]

Hi, what a good positive response you had from Happylondon. I’m sure youl get lots more. I don’t know about your illness as I have Crohn’s and had a plural effusion which was bad enough!! My heart goes out to you and hope you get some much needed support. I’m afraid I don’t get on here too much as I work and have very bad fatigue so I don’t feel up to it too often. I’m sure it’s a lot to get your head round to say the least. Sending you lots of love 🤗🤗

[Hidden in reply to Angep]

Thank you Ange! Poor you..🌸🌷🌺 Try to get some rest..come round more often, we have wonderful comedians, poets and photographers 😉

thinking of you xx

Fran

[Angep in reply to Hidden]

Thankyou Fran il try pop in when I can. I take Humira for my Crohn’s which gives me vertigo!! So I take stematil for the vertigo !! The point to me rambling is I don’t always remember 😂 and have a fuzzy brain sometimes!! Hope you have a good day 😁

[Hidden in reply to Angep]

Oh dear..I understand what you mean, it is all about meds and side effects nowadays..Wishing you a non-fuzzy day Ange 💐xx

Fran