In a nutshell. 3 weeks ago my dads consultant said there was nothing that could be done for him. life expectancy was 2 years from diagnosis (which was 4 yrs ago) and he would arrange pallative care.
Went to see a private consultant in Cardiff who specialises in PB. WOW. He's good. So for all you PF sufferers, read on!
He has known Pf sufferers to live for 12 years and one case was 17 years. He said it is often dormant for 5 years BEFORE you start getting symptoms and then if you get it diagnosed at the right time, TREATMENT can work and does work. He said he has CURED people of fibrosis when he has seen them at the right time and depending on the severity etc. Each patient is different and has to be treated on its own merits. My dad has NEVER been given steroids and is starting a high dose course tomorrow for 8 weeks. He explained that this will not cause him to increase his weight, there is no proven link and if it does improve his appetite then he has to be strict with himself. My mother has clear instructions on cooking!
My dad said he has little appetite and doc siad that is wrong, he should have an apptite and we have to work on that. He also said that even though my dad has lost weight he must make sure he is losing fat and not muscle which is what he is doing. He has a belly-sorry dad-and he explained that this is not helping with his breathing cos his belly is pushing his lungs up and squashing them. Makes sense. We spoke about a transplant option and although he said he had not known anyone to have them over 64 yrs of age, he has not ruled it out. He wants to see what happens with the steroids first. He also diagnosed asthma-no one else has. My dad also used to take simvastatin for cholestorol but stopped them ages ago cos he didnt think it did any good. Doc said he needs to restart them because they also have anti-inflammatory purposes and this is paramount for the PF.
My dad came out smiling and that was enough for me. So I do believe that its not what you know its who you know. As my dad said, he was worth every penny! He's right but we should all have access to high callibre specialists shouldnt we, NHS or private.
Keep positive and smile xxxxxxxxxxxxx