IPF - early stages of diagnosis...so many questions
I don't even know where to start to help my spouse through this. We are writing questions down as they come up but other than some obvious questions that can be answered on Mayo's website, I feel like we're forgetting something. There is the sound of crackle when listening to the lungs and ground glass on the 1st HRCT scan about 6 months ago. Another will be performed this month to check progression, if any. Spouse is experiencing low o2 levels with walking and exertion but they are brought right back up with o2 machine and rest. It seems to be progressing and he is becoming less active. I'm keeping tabs on the tale-tell signs of late stages IPF like fatigue and appetite and its scares me the fatigue is increasing and his appetite is decreasing.
We are told there is a 50/50 survival rate during transplant but what happens down the road if the organ(s) fails. Will we have a heads up physically if something is wrong or will it/they just give out? Can we get back on a transplant list after receiving one already? Is there a chance that all the damage is done and will be stable, meaning we just treat the symptoms going forward? Or does IPF always get worse and force a decision of getting on a transplant list?
We have small children and just lost at the moment. I'm looking for a support group to check in with, share questions that come up and compare dr recommendations etc…anyone going through this or on the other side of a transplant?
Thanks in advance.