Nintedanib

[Bonchops10]

Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update anywhere. How disappointing - haven’t the energy to go through it again, maybe another time…. I think I replied to someone but who knows ?!?!? Kind regards Dita x

[horseygirl_0103]

Ive got a lung transplant assessment in March & got to travel all the way to wythenshawe for it.They kept changing it & each time they give me a date Ive got my ambulance pre ordered & each time its never turned up ending up in me having it cancelled for me because of the inept ambulance service (not my words but a family members words)

When I first enquired about it my specialist said she wasnt prepared to give a date for one because in her words "Id never ger through the assessement". When I was hospitalised before xmas during my ECG the doctor doing that seemed to know about it & pretty much confirmed which I know will happen -they will say no because there are lots of things not in my favour which are BMI (which I know just by looking at myself I am over 25- the no it has to be) , in other words my body weight ,results of lung function tests (& fear of needles - something i can get over given I have so many blood tests - so it ll be a waste of a journey) & it will prove her right ,