When breathing becomes hard

[Chase_Corin]

Dad was just taken to the Hospital by ambulance (I am at home because I have no patience for hospitals and I am taking care of the pets and diner)

Dad's doctor advised that he go to the hospital, so it wasn't an emergency situation per-say but his breathing has become laboured I have noticed it mostly in the last 4 or 5 days. Dad says that he noticed his breathing getting weaker over the last Month or so.

Dad was diagnosed November 2010 they don' know if it was bulbar onset or not because of pervious compomised nerve function. So I am thinking he is doing okay not having breathing difficulties until now.

He does sleep with the Bipap every night and can't lay down without it at all or he can't breath period.

Do most ALS patients end up on oxygen? do they have to be on bipap all the time? Dad is scared that this is the start to a downslope which I am hoping he is not. Does anyone have experiance with Breathing issues and ALS? I would really like some people's experiance about this.

 

[cervus]

Bob used his BiPAP at night and during his day time nap. About 3 or so weeks before he passed he said he was experiencing air hunger. His BiPAP pressure was adjusted. About 10 days later he had to have the pressure adjusted again. This was a strong signal that his breathing was quite compromised and his RT told us we were nearing the end. No oxygen was ever used. From what I've heard here people can be on the BiPAP 24 hours a day for months. That was not what Bob wanted to do but it turned out he didn't need to either. Take care, Chase.

 

[trfogey]

Chase,

I've been on BiPAP 24/7/365 for 2 and a half years now. I've known others who have stayed on them 24/7 for a couple of years. Using a BiPAP 24/7 will keep your father with you longer, but there's no way of predicting how long.

Oxygen for ALS patients is a tricky call. Make sure that the doctor prescribing the oxygen knows about neuromuscular hypoventilation and how to monitor for CO2 retention.

And, yes, this probably is a downslope for your dad and, no, nobody can say for certain how long it will last or how disabled he'll get. I wish I could say something more encouraging, but there simply isn't much encouragement to be found sometimes.

Let me know if you have any further questions and I'm praying for your dad.

 

[st123]

Dad's been having breathing issues since last summer. We didn't know it was ALS until earlier this year. He started using the bi-pap immediately and now uses it almost every hour of the day with a small amount (2ltr) of oxygen. I think it needs adjusting from the medium range setting it's on now. We have clinic next week so I'll ask the respiratory therapist.

I don't think anyone can give you any idea of how long anyone has once they start having breathing issues as progression is different for everyone and can speed up or slow down with no rhyme or reason. We can't do anything about the progression, but bi-pap allows Dad to feel better and do more than he could without it.

Our experience with hospitals and his breathing issues was not good. We even saw a pulmonary doctor prior to his diagnosis who was of no help whatsoever. His primary doctor and the sleep doctor were also of no value for the breating issue. The ALS Clinic was the first and only place we found the correct support and advice.

Keeping you and your Dad in my prayers.

 

[st123]

Sorry, took me so long to type that TR beat me. He's the expert on this one.