kswyo

That's my daddy.

Growing up I would have never known he had CF. I didn't find out until... highschool, I think. He was tested as a child and I don't know if it was his mom or the Dr but they said he had CF and then said it was just pneumonia. There was a lot of denial. His brother also has CF.

Dad lived a very full life because it didn't really hit him until later in life. He never wanted me to see him sick. I had moved away at 19 and on the visit (age 21) where he met my (now) husband I was shocked at how far his CF had progressed and the toll I took on his body in such a short time frame. I would not wish that on my worst enemy. He compared it once to a quote from a movie, I can't remember the movie but one guy asks the other what happens without oxygen in space and the other guy explains the process your body goes through and the pain. Dad said that 2 minute process was what he felt stretched out over years. I think that was the first time I truly understood CF.

So like my husband said above, my dad died a month (actually about 2 weeks) after we visited him. About a month he died our daughter was born. She's almost 7 and I tell her all about her grandpa and how he loved her.

Dad fought for treatment and medicine. He didn't like going to the Dr or hospital but he fought to get something for help. I was going to ask you about your health insurance and what it covers but I see you're from the UK. Even with disability dad racked up hospital bills soooo high and he rarely went and never stayed long. They refused any end of life care (like hospice) because they couldn't give a definitive life expectancy. They took him off his pain meds a month before he died because they worried he'd become addicted. He couldn't function without them, he was in so much pain he lost his memory of that week. Mom bought him pain pills off a friend. The last day we visited he finally had his pain manageable and had no memory of our visit.

Most of the normal treatments wouldn't work for my dad but do work for his brother with CF. Unfortunately, I don't think he can afford most of the medicine that would help him. He does some clinical trials but when the drug goes public he then can't afford it.

I'm sorry I've rambled away a life story. I feel some kind of special bond with CFers. I wish you the very best. I hope you can live a long, full life. Just breathe <3

Life expectancy of a CFer varies dramatically depending on when it really hits. My dad lived a very full life with zero treatment until his late 30s when his really started taking toll. The OP said there will never be a cure that can help him. Without trying to speak for him, I'm guessing this is because the damage is done. You cannot reverse the damage CF does to your internal organs, not to mention the side effects of all his treatment. For my dad even if he had a lung transplant it wouldn't change the fact that his guts were rotting away as well. He aged decades in mere months. You can't cure that.

What kind of precautions are made so that being in the hospital for so long, around all the various illnesses, doesn't make you sick?

I've been reading through this thread and this sticks out for me, is it because of how long you've been doing these 2 week stays that you feel, sometimes, patronized? Like you've probably been there longer than most your nurses and doctors? You could probably train the new ones :p