Breathing questions?

[skipper66]

I hope this is the correct area on the forum to post this. I am not my dad's caretaker but I have some concerns about his breathing. He is limb onset. He sounds a little bit more winded when I talk to him on the phone 2x's per day. I don't want to worry him with alot of questions but I wondered what to ask my brother and sister. Dad told me his oxygen level was still pretty good but what he was expelling (sp?) is at 67% which I assume is low. The doctor suggested he starts using his bi-pap again at least as night. They think it will help a little with his fatigue. What should I ask them about his levels. I live in Illinois and he is in Texas so I am always worred that they don't tell me everything. Thanks, Kim

 

[lgelb]

Kim,
If he sounds winded there is no question BiPAP would help at night, and may become more necessary while awake. I am assuming the 67% is FVC. That means his working lung capacity might be about 2/3 of yours. Pre-existing conditions, physique and which muscles are failing first all affect how much a given FVC affects breathing/quality of life, so I wouldn't focus on the number as much as how your dad feels and functions. I guess my question would be, why would he not be using his BiPAP at night already? Does he have some kind of issue w/ it? That might be something that all of you can work on.

 

[MaxEidswick]

where in TX? The is a great sleep study lab down at Houston Medical where they will test BiPap effectiveness ...

 

[Barbie]

skipper, it is great you can talk to him everyday. try not to worry about those numbers so much...what matters is how he feels. The bipap can help with fatigue, so encourage that with him.

It is hard when you are so far away, but it is so obvious that you love and care about your dad so much. I don't think they are keeping things from you--it is normal I think to leave out details when relaying information to someone outside the everyday care circle. Even if they don't tell you everything, you stay involved and that is what is important.

since you are not there and can't be a caregiver, you can be the morale officer. you don't have to know every single detail--your job is to make him feel important and loved.

 

[AKjo]

It is hard when you are so far away, but it is so obvious that you love and care about your dad so much. I don't think they are keeping things from you--it is normal I think to leave out details when relaying information to someone outside the everyday care circle. Even if they don't tell you everything, you stay involved and that is what is important.

since you are not there and can't be a caregiver, you can be the morale officer. you don't have to know every single detail--your job is to make him feel important and loved.

Barbie, I love love love the way you phrased this. Perfect advice for children of PALS who are not able to be with them. Thanks for giving me words to use for my own adult children.