Bronchiolitis Obliterans

So today I finally saw a specialist. Head of respiratory no less.

I finally 'officially' got my diagnosis.

(My practice nurse had already told me a month ago, as they had been sent a letter)

I feel like today was a massive kick in the heart.

He didn't even tell me all that much about the disease, but what I gathered from today is, because I have Rheumatoid Arthritis (RA) this condition is getting worse.

From my last lung function test I am still dropping and currently have 29% lung function!

They would normally try to stabilise, which current RA drugs don't seem to be doing, he is going to contact RA specialist and ask for the biological drugs.

There is no chance for improvement, without a lung transplant, which they would be unlikely to persuade the transplant team to do, as the RA will attack the new lungs too!

There best hope is to stabilise my condition.

He is going to get the community respiratory team to work with me.

Winters will be horrendous. Chest infections galore. Each one dangerous!

Life is now severely limited, but I need to know more.

I felt like he was reading from a script! No matter what we asked he kept trying to shufty the responsibility to the RA team, but when I see them they shufty it back to him.

I feel like I'm dying and no-one will help me!

I can't even breath properly through the smallest of activities (ie putting on a top!)

I am only just 42, I feel like a let down to my husband and 5 year old daughter.

Anyone able to input or shall I just die quietly in a corner!