Biography

Hi Everybody.

I was diagnosed end of November 2021. I took a second opinion due to this disease being such a life changer. ILF was confirmed and this Monday 21st Feb 2022 I will see a nurse who advises on medication. The Lung Doctor and Nurse are recommending ESBRIET Pirfenidon. I have looked into both ESBRIET and OFEV and have to make my mind up by Monday as to the BEST way forward. My brain is scrambled! There is so much info out there!

I have read the glimmer of hope with easing medication, NEBULISED Pirfenidone. This is not a cure! Only a more strategic direct medication to our lungs as apposed to all over the body resulting in horrendous side effects. I am 76 years old and was diagnosed a short while ago and informed there is no chance of a lung transplant and am at the beginning of this “Yellow Brick Road, adventure. Was planning for my “Golden Years”, now all changed!

I would appreciate any tips or life truths I can handle anything as long as its solid and helpful. I came across reference to book created by Charlene and others called “FOR PATIENTS BY PATIENTS” how can I get this to read.. It probably gives a balanced veiuw of living in this new  ILF world for me.

Lets hope there is a cure for IPF in the very near future, It is a very cruel disease.! I was thinking that with all the COVID Pulmonry related illnesses this must help with striving for a cure of the destruction of our lungs. Astonishly my second opinion Lung Doctor said NO!

Its a miracle I have found  Pulmonary Fibrosis News I already feel connected with  fellow sufferers and have hope in my heart!

Thank you for any advice.

Christopher Leather. (Amsterdam)