BiPap as "life support"

[ses76]

Hello again,
I'm wondering how many have experienced this phenomenon of BiPap as life support in this disease? When my dad was diagnosed in 10/07 they had just begun using BiPap in the early stages of the disease...nightime use. The doctor said if it were a drug it would be considered a 'miracle drug' because of how it 'prolongs survival'. At the time I remember thinking (and I thought the same thing about the drugs that 'prolong survival') What's that survival like? What's being prolonged? Healthy full functioning or end stage suffering? Hope this makes sense.

Fast forward...my dad's disease progressed to where he can no longer walk and his breathing suffered to where he is 100% dependent on the BiPap...when it's off for a few seconds to change masks he's riddled with anxiety and yelling (his version) at my mom to hurry.
So essentially the BiPap is functioning as a vent without the invasiveness....The NP at the ALS clinic has told us that *eventually* the BiPap will be unable to help with his breathing 'problems'..that certain muscles will 'go' that will not be supported by the BiPap's method. He's been very dependent on this machine for maybe 8months? I don't know what his course would've been had we not been using it from the beginning or had we not used it at all.....

Is there anyone else experiencing this BiPap as 'life support' phenomenon? We have learned that even the BiPap companies are very unfamiliar with this...It took a very long time to figure out how to provide 'back up' energy to the machine should we have a power failure (the answer ended up being simple but no one really new the answer b/c no one had asked the question before!).

If your PALS is one with a true 'zest' to live each day to the fullest, and get the most out of each day left, I would say this BiPap *would* be a miracle. For my dad, however, I have to wonder......... He's basically been crippled by depression from diagnosis on....he barely has had a moment of enjoyment since, even when he was basically fully functional. (I so wish he had been misdiagnosed over and over until he was bedbound for this reason! strange, I know, but true.)

So I don't really know if I have a question but wondering about others' experiences or thoughts in this area?

Thank you for reading,
~Susan

 

[brooksea]

Susan,

There is a new BiPap by Respironics: BiPAP®AVAPS™

This device is supposed to automatically adjust for breathing and I've read from one pALS that it has helped him tremendously.

Is he on any medication to help with the depression?

I'm sorry I cannot be of any real help on this.

Hang in there!

 

[rick/Wpg]

Hi Susan...so sorry for what you and your family are going though!
It might help some others for you to share your solution to power outages....this forum is such a great resource for tips to cope and there are always new and innovative ways to help
Take good care!
Rick

 

[BethU]

I don't know if this is true anywhere else than L.A. area, but it's worth checking if you are dependent on a steady electricity source.

A friend who worked at DWP here said that sometimes they have to voluntarily bring down parts of the grid to avoid overloads. I don't know how they choose which areas to bring down, but people dependent on electricity for sustaining life can apply to NOT have their electricity taken down whenever possible .... or to be the last to go down and first to go up.

She brought me an application which I haven't filled out yet, as I'm not at that point. But it is certainly worth a phone call to your electric company to see if anything like that is possible in your area.

Of course, this does nothing for you in case of an earthquake, tornado, or flood, but any little edge we can get helps.

 

[danjay]

Will it work to use a power inverter plugged into the car cigarette lighter to power the bipap?
It's what I am trying to explore as they are relatively cheap and light weight and should allow
one to travel.
Dan

 

[redneck charger]

I always wished the bipap could be portable.. I was wishing there was a way I could have strapped it on to Mom's wheel chair, and we could of taken her out of her nursing room.. I wish they would have come with a battery pack..When something like that is SO needed ,, you would have thought they would have come up with something by now that would extend a ALS patients life..

 

[ses76]

Hello again everyone!
I wanted to post about the biPap...we had figured out all kinds of things to do to 'take it with us' in trying to encourage my dad to want to go out (he has relied on this for quite some time) but he never even wanted to come downstairs during family gatherings or whathaveyou.
Anyhow, to the point..... for 'emergency preparedness' we have a generator all set up and ready to go in the garage and have done 'drills' to be sure mom knows exactly how to start it etc. This, though, would take time to get up and running...just a few minutes but, like I said, dad will panic if he's off the mask for a few seconds...So, we purchased a 'power pack' at the computer store (I think CompUSA but they all have them) which is like a giant battery with lots of plug slots for things like computer, printer, monitor etc...it's supposed to be for a computer in case of power outage. We have that plugged into the wall and the BiPap plugged into it so if power goes out that automatically kicks in. We tested it by unplugging the powerpack from the wall to be sure it would work.
If one would like to go by car with the Bipap, I believe it can be done! Someone earlier mentioned the car lighter adapter ...you plug it into the car lighter and it converts to a 'regular plug'. We have one and tested it with our back up machine (that's another thing..we have a backup biPap in case the one we have craps out...) and it works out. You could probably also take this giant power pack with you if you're so inclined. My dad would *never* do this traveling for a number of reasons but mainly b/c he'd be far too nervous something would 'go wrong'. I think it would depend on the persons status as far as how 'reliant' they are on the machine and also they're comfort level with the situation.
I would LOVE if any of this info helps someone out there! Like I mentioned, the techs they send to the house who work for Respironics (to the pp who mentioned they're machine: we have it! thanks!) and the folks at the other end of the 800# aren't really used to dealing with this machine being used in this way......

 

[rick/Wpg]

Great tips Susan!
I'm sure they will help a lot of folks!
Up here in the 'frozen north' we are very conscious of power failure...not unheard of to be down for a day or two at a time.
Thanks for sharing!
Rick & Joan

 

[debbie52]

Bi-Pap life support

My husband has been "dependent" on the Bi-Pap as well and sounds a lot like your dad. His quality of life daily is miserable. He is unhappy doesn't leave the house, complains if everything isn't set up for him as a priority and has made every family member feel guilty and depressed.

Without the bi-pap, I believe he would suffer for a comfortable night's sleep. So, I just let it go and assume that, if this is how he has chosen to deal with ALS, then we all are just walking on egg shells until he changes..which will never happen. He wants everything done for him immediately and has no desire to engage in happy conversation. It's work that I enjoy rather than being at home. Terrible way to live, but some people don't take out their misery on evreryone around them. He does.

Yes, it's an awful disease, but I imagine there are none that are good. Many people suffer and accept their faith as their guide to happiness rather than prolong other's misery as my husband has done. He has been at ome for years. It's been pretty rough the entire time.
Depressing reply, but truthful

Debie










My

Hello again,
I'm wondering how many have experienced this phenomenon of BiPap as life support in this disease? When my dad was diagnosed in 10/07 they had just begun using BiPap in the early stages of the disease...nightime use. The doctor said if it were a drug it would be considered a 'miracle drug' because of how it 'prolongs survival'. At the time I remember thinking (and I thought the same thing about the drugs that 'prolong survival') What's that survival like? What's being prolonged? Healthy full functioning or end stage suffering? Hope this makes sense.

Fast forward...my dad's disease progressed to where he can no longer walk and his breathing suffered to where he is 100% dependent on the BiPap...when it's off for a few seconds to change masks he's riddled with anxiety and yelling (his version) at my mom





























to hurry.
So essentially the BiPap is functioning as a vent without the invasiveness....The NP at the ALS clinic has told us that *eventually* the BiPap will be unable to help with his breathing 'problems'..that certain muscles will 'go' that will not be supported by the BiPap's method. He's been very dependent on this machine for maybe 8months? I don't know what his course would've been had we not been using it from the beginning or had we not used it at all.....

Is there anyone else experiencing this BiPap as 'life support' phenomenon? We have learned that even the BiPap companies are very unfamiliar with this...It took a very long time to figure out how to provide 'back up' energy to the machine should we have a power failure (the answer ended up being simple but no one really new the answer b/c no one had asked the question before!).

If your PALS is one with a true 'zest' to live each day to the fullest, and get the most out of each day left, I would say this BiPap *would* be a miracle. For my dad, however, I have to wonder......... He's basically been crippled by depression from diagnosis on....he barely has had a moment of enjoyment since, even when he was basically fully functional. (I so wish he had been misdiagnosed over and over until he was bedbound for this reason! strange, I know, but true.)

So I don't really know if I have a question but wondering about others' experiences or thoughts in this area?

Thank you for reading,
~Susan

 

[joelc]

Bipaps can be made portable very easily as I made mine.

But if you want freedom and comfort and convenience you have to get a trache and vent. Then life become easy and enjoyable again. There is no comparison to the comfort between a bipap and a vent. Explore some of my posts about this. Everyone seems to be afraid of going the vent route but believe me when I say I got my life back after getting one!

 

[hopingforthebest]

Dear Joel:

You are truly an inspiration to all of us and definitely our man to talk to when and if trach/vent is the option.

The gals that posted on this particular thread might have a had time convincing their loved PAL to vent/trach.

My PAL is not the "nervous type" at all but....he is not even open to the idea of talking about trach/vent while the bipap is working for his breathing needs. You know we have talked, and I pray that it will not be an emergency decision when the time comes.

Again, his last ALS clinic visit, the R.T. at the university told him of two patients on the bipap for over 13 years. With that, confirming his reservations of surgery.

And, by the way, his wheeled pull cart has worked great. Two soccer games and he went to his first "Happy to be Alive" party in S. Jersey and he did great with the bipap in the pull cart.

To those gals that are struggling with PALS that are just not happy with this stinking disease, I hope you get your well deserved breaks and now with the warmer weather go and get your toes done! I did ventured out today......but had the battery back up to bipap in my trunk from party yesterday, and sat down, soaked my feet and had to run home as the electricty went out with this 95 degree weather we got. So.......plan well and get out and do something "special" for yourself!

Patty ;-)

 

[joelc]

Hi Patty, sorry if I spoke out of turn.

Having had both a bipap and a vent I am uniquely qualified to speak on this issue, and I don't mean you any disrespect! Please accept my apologies if it has come across that way.

I have spoken directly to a number of PALS that were adamantly opposed to a vent and most of them changed their view after talking with me.
Another observation - they all were reluctant because their CALS were afraid of it and that was their biggest reason for not considering one. After talking to my wife and finding out how easy it is to look after someone with a vent they too changed their attitude toward it.

All a person has to do is read through this thread to know the problems with using a bipap 24/7, those problems are not present with a vent and your PALS energy level will increase significantly with a vent.

 

[ses76]

Debie: *hug* to you...I had to check and be sure it wasn't my mom posting when I read your note. Sometimes we just have to take a deep breath and put our best foot forward to help *our* PALS...
Patty: Thank you for your thoughts...I wish my dad would go out with his biPap...not interested. The last time he left the house (the last time he was out of bed for any length of time) was last august for my daughter's Christening which I arranged to have take place in my home so he could attend. He was not as reliant on the biPap and could be off for a few hours here and there...he could still transfer with assistance too. That Christening was SO stressful! He fought tooth and nail with my mom b/c he didn't want to come...I was so nervous that something would happen while he was out (like what I don't really know...?) I could barely breathe the whole time he was there (only about an hour though!)...Anyhow, no, he won't go out of the house on the biPap..nope. no way. c'est la vie.
Joel, wow to you. You are an inspiration and I'm so thrilled for you that you living l-i-v-i-n' with this disease! Sadly, my dad has never had a drop of interest in living with this...he considered the vent merely from the standpoint of being afraid of the alternative but never as an option to LIVE in the true sense. He hasn't 'lived' much since diagnosis, very, very sadly. His choice was to forgo the vent and sign on for hospice care. ...and that's where we're at. This is what prompted the original post b/c he's on hospice care but sustaining with this biPap...it's surreal truly. I loathe watching this process and (as noted in another post of mine) I'm wanting to learn as much as I can about what's coming for him and my family.................
Best to you all! thanks for reading.

 

[hopingforthebest]

bipap

Hi Joel

I NEVER take your posts as offensive in any way, shape or form. You are a hero in my eyes. Just hope George will be open to "someday" talking to you about the vent.

You are a gentleman too Joel and we love you!

Patty :grin: