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jeff_089

Member
Joined
Jul 8, 2008
Messages
14
Reason
Loved one DX
Diagnosis
10/2007
Country
CA
State
bc
City
burnaby
Hi,

My name is Jeff and my dad has had als since 2007. I haven't been on the boards for a while.

My dad had tests done today and his breathing capacity while sitting up came back at 35% and while lying down is 20%. We asked the doctor what the lowest breathing capacity before venting was and he said 20%. Is that true? Should we wait? Should we get it soon?

If my dad does go on the vent how much time could we expect in prolonging his life?

Any info/experiences would be most appreciated.

Jeff
 
Hi Jeff, I answered you by responding to your PM but thought I would respond here as well.

I would encourage you to consider having it done really soon as the healthier he is the quicker his recovery will be. Wait too long and recovery time is months instead of days. Don't wait too much longer, I had mine at 30%.

You can expect to prolong his life indefinitely. Or until old age gets him. LOL.

Have you read all my experiences with getting a trache and vent? Content Index
 
Jeff, I would inquire about non-invasive ventilation now it will make him feel better. He may only need it at night and maybe some during the day but it will make a difference. I have been on a non-invasive vent for 3 yrs.
 
What are the differences between the two? Is the non-invasive vent the BiPap? If so, my dad has been on it for a year and a half.

Thanks,

Jeff
 
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Hi Jeff, can't you ask your dad what he wants done?
 
My dad is not sure what he wants to do. I would want him to go on the trache but he is not sure if he wants to.
 
Jeff, yes they are similar but the vents that I'm referring to like the LTV and Trilogy have various adjustments that can made specific to the need that bipaps don't have. I am confused on why he needs a trach now. Is he having trouble swallowing or speaking? We all have to make this tough decision at some point I just can't make an intelligent decision until I physically need one. By intelligent I mean what is the rest of me doing, am I "locked in", can I talk, can I swallow, has my progression changed. I just believe a trach comes with its own set of issues. If I physically needed a trach today given my current status I would get one. But for now non-invasive ventilation is getting the job done. Just my opinion, hope this helps.
 
Hi Josall,

What is the LTV and trilogy? I have not heard of these before. The doctor never mentioned these.

Thanks,
Jeff
 
They are devices used in the US but where we live there are different makes and models.

Since I am one of the few that have a trache and have gone through using a bipap I can't understand what the fear and reluctance is with so many people. A trache is so much better than putting up with an uncomfortable bipap. I know there will be people mad at me for saying that but they don't have experience with a trache so should not be passing judgement.

Sorry if I offended anyone.
 
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