IPF So many questions...not enough answers

[greenfishfing]

So....I have never posted anything or blogged anything before so I am a newbie and as the post title suggests I have questions and few answers.

Found out recently my Dad has IPF, seems to be progressing rapidly (17% in January and now 33%). He is on 4l of O2 24/7 and struggling with a cough and to move and seems to be getting worse. The immune system suppressing treatments he is on do not seem to be having any effect....

From the journal articles I have read I know there is no standard progression with IPF and no timeline. But it would be helpful to find out if anyone else has experience with rapid progression who can help me understand how fast / what to expect / how long to make the most of my dad.

In advance - thank you for anyone who may be able to share their experience in an area where there is so little out there.

[Helen6]

Hi there, I also have IPF but I'm not sure what to say that you might find helpful. As you know, the disease can develop quickly or slowly and doctors don't know why this is. I'm not sure what your percentages are referring to, my consultant talks in terms of my lung capacity versus the expected capacity for someone of my age/weight/height, so my percentages are going down. I've currently got about a third of the capacity I should have. As your dad's percentages are rising then it must be measuring something else, perhaps the percentage of scarring in the lungs? Being tired is all part of IPF. I do things when I can and accept that there are times when I can do nothing at all. Has your dad got a respiratory nurse visiting?, if not I'd ask your doctor about this. For me, this is the most valuable service I receive. It's good to have someone to discuss issues with as they arise. I'm not sure how old your dad is but if he is below 65 then it might be worth exploring lung transplant options with his consultant. Your being there will be important to your dad, so just keep supporting him as well as you can.

Best Wishes,

Helen

[greenfishfing in reply to Helen6]

Hello Helen,

Thank you for taking the time to reply, I really appreciate it and hope that you are doing ok. The % is amount of scarring on his lungs. He is up to 5lpm on oxygen 24/7 and having regular coughing fits, all within a couple of months of being diagnosed. He is very much limited in terms of being able to do anything now but trying to keep him going and keep him focussed on listening to his body and doing what he can when he can. He is back in to see his consultant on Wednesday so will mention about the respiratory nurse to him so he can ask. He was advised a lung transplant wouldn't be possible due to his weight, he is dieting but up against it - still trying to keep focussed. It is a whirlwind.... and a learning curve

Take care and thank you

Steph

[sibkev]

i kept it at bay for almost 10 years till my transplant in march 2016 dont get me wrong i was in a bad way in the end i found that walking and getting breathless as much as i cld worked slowed it down anything else you need to know plz ask

[greenfishfing in reply to sibkev]

Thank you so much for taking the time to reply -that's really positive to read you kept it at bay and managed to get a transplant. That is really hopeful. Thank you