Hi my name is alan and 3 months ago I was diagnosed with ipf.
This was the first time I'd heard of this illness. Both myself and my wife were so glad that it wasn't cancer we had no idea how serious this was we came out of the specialist room happy. It wasn't until I googled it that it sunk in how serious this is.
We got married 2 months ago after saving for 3 years and this was a bomb shell we hadn't planed on.I have now had X-rays, ct scans , lung function tests and just had a lung biopsy with vats done. One of my lungs collapsed during the biopsy and I spent 3 days in ICU.
I would like to know why this illness is so unheard of in the uk.
I am now awaiting my biopsy results so I can get on the transplant register for a double lung transplant.