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Graybeard

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Joined
Sep 24, 2014
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440
Reason
PALS
Diagnosis
12/2013
Country
US
State
Ca
City
Surf City
Had bi-monthly meet with VA neuro today. She stressed I need to carry polst with me at all times. Suggested it be put on the back of my portable wheelchair. She also suggested the bipap for upright use, as I have to support my back with my arms to breathe well.

I told her I am considering a vent, but unsure. I asked, "At whet point do you get a vent, when the FVC is at ten percent, for example?"

She said, "You're probably already there."

That stunned me, as I was 50% at end of October. I can still do everything I could a year ago, although more limited, due to breathing. I am almost totally self-sufficient, except for things like heavy lifting. Wifey wasn't feeling good today, so I drove us the 20 minutes to the VA. After recuperating, she drove us home, and I took a three hour nap on the bipap.

I really feel I could have more life after vent.

Thoughts?
 
Greybeard, am I missing something? Did she do another FVC? Did she measure O2/CO2? Not sure what you mean by upright use of BiPAP? Do you not have it on your chair already? Or are you using it from a table, only at home?
As I'm sure you have read, getting a vent isn't really exactly when you hit a certain number, more like when BiPAP isn't enough -- as I understood it, you aren't feeling like you are lacking air when you are on it? Or am I wrong?

On the face of it, if you're not saying, "This isn't enough air" or feeling air hunger, or showing a certain level of hypercarbia/dropping sats, I don't understand why she would say that. Anyway, the phraseology does not fill me with confidence. But to comment, I would need more facts.
 
Thank you, Laurie. I'm so glad you're still here with us.

The bipap sits beside the bed, and I need it urgently whenever I lie down. Thanks to your teaching me how to adjust it, I think it's working pretty good. My day includes sitting here at the keyboard in an office chair with arms to support my arms, which keep me vertical. I also watch 3-4 hours tv sitting in a semi-reclining sofa. Due to a spine problem, I walk around hunched over, which restricts my breathing, so I make trips of less than 20 feet, except for going downstairs and out to the car. When we go anywhere, wifey or son pushes me in a portable wheelchair, the kind with the four small wheels.

So far the only air hunger I have is lying flat without the bipap. I am getting a battery pack for the bipap next week. Then I will consider using it more. My O2 runs 92-95% at idle, and down into the 80s after climbing the stairs. The neuro's 10% FVC was just a guess, I'm sure.
 
Thanks for clarifying, GB. I think the neuro was going off that mythical time table we were talking about in another thread. It's not applicable to you, obviously. Also, I would not expect a neuro to be playing the "Miss Cleo" [remember her?] of respiratory decline.
 
GB, as you may remember Grumpy's FVC was at 27% back in Sept of 2014. Since then he has refused another test but he has steadily declined. The one saving grace has been that the VA neuro recommended a Trilogy and his secondary setting is for his "sip n puff". Wouldn't this be a possibility for you? It can be completely portable, used on the primary setting at night or naps for the bipap. The "sip n puff" allows him the freedom of talking, interacting with the family and keeps his o2 stats at 96-98% even when sitting up. Just wanted to throw that out at you.
~Kaye
 
Thanks, Kaye.

Rong Beach VA says they can't get a Trilogy. They are to provide me with a battery pack for my AVAPS. Meanwhile, I have appt with pulmon to seek Trilogy thru Mediscare. I want a backup to the AVAPS anyhow.

Laurie: never heard of Miss Cleo.

Can you live as long on a bipap as on a vent?
 
I got a vent a few months ago. In my opinion, it was too soon. Like you, I had no shortness of breath as long as I was in the right chair (my wheelchair). 93-96 O2. The thing I wasn't prepared for is the amount of preparation it took. You should get a hospital bed and holder for your wheelchair before you get a vent. I wish i had waited. That said it was a good it was a good decision when you're ready for it. Until then, do you have a wedge pillow? A wedge pillow really helps you sit up in bed, Which would help you breathe better.
 
GB, frankly that sucks! I just can't imagine them not getting it. I know how lucky we are to have our VA benefits and have heard from others that our VA is a little better at providing equipment!
I am all for venting if you are still mobile. Grumpy is not (his progression has been swift and he only moves 3 fingers on his right hand now) and so he made the decision not to vent. In talking to him about your situation and reading him your posts he said he would vent in heartbeat if he were in your position. He also said its BS you can't get a Trilogy since they use it for vented patients here in Ohio as well as bipap and sip n puff.

On another note, Grumpy and I spent 3 months in Long Beach for work....loved it there especially since it was during the winter of 2013 and the weather here in Ohio was awful!

Hugs from us both
~Kaye
 
GB, if you are going through the Medicare process, I would check out the Astral as well as the Trilogy -- it has an internal battery also but as you know, I like the ResMed platform better than Respironics. And if you do decide to vent, like the Trilogy, it can serve that purpose as well. And it is smaller/lighter, I believe.

But as for venting _now_, that just makes no sense to me, sorry. I would continue exploring what is, by all the accounts here, a momentous and sometimes regretted/rescinded choice.
 
Graybeard, I brought STeve's trilogy from an outside medical plan with us for his assessment. They asked him if he was going to be vented/trached. Based on your answer to that question the respiratory therapist said they often send you to avaps if no trach and trilogy if you trach. There are exceptions however. The trilogy machines apparently were the standard for a bit but they have changed the protocol, so we were told. Steve will stay with a trilogy and also get a trilogy battery, which isn't standard, due to the respiratory onset and his progression.
 
You should also check into what resources the VA /Medicaid /Medicare provide. Don't just trust them.
 
GB, "Miss Cleo" was a famous "psychic" whose TV commercials for her hotline dominated the late night airwaves for a while. If she didn't know it, it wasn't worth knowing.

AVAPS ("average volume-assured pressure support") is just Respironics' trademarked mode name that says your IPAP is going to change within the range set, to achieve the set volume minute after minute. The basic concept, which is now called iVAPS on ResMed machines (the "i" is for "intelligent"), is available on the Trilogy, the Astral (the two most often-prescribed "ventilators" that can be used invasively w/ trachs or non-invasively as most here are doing) and some BiPAPs-that-do-not-have-internal-batteries (including my fave, the S9 VPAP ST-A). As many of you know, I prefer iVAPS' algorithm, which recent studies suggest results in lower pressures and thus greater tolerability.

While each of these machines has different modes that are implemented somewhat differently, you aren't getting fundamentally shortchanged if you get a BiPAP w/ AVAPS or iVAPS to use at home and someone waits to see if you will need PAP when you are elsewhere, before ordering the Trilogy or Astral. You can also buy an external battery for your Respironics or ResMed BiPAP, for possibly less than your copay/supplies for a new machine, but it would be a more cumbersome package since you would be carrying two things around.
 
Thanks all, especially Laurie with your sharing of your extensive knowledge.
 
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