Breathing Harder

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Graybeard

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Wifey was sick today, so I had to drive the 20 minutes to VA to be fitted for computer viewing glasses, and pulmo. Volunteers pushed me from free valet parking to appt.

I finally got to see a good doc at the pulmo clinic today. He asked me if I wanted a trach. I said I'm strongly considering it. He issued me a Resmed S9 VPAP ST-A fully automatic machine to replace the AVAPS they gave me last summer. My breathing is rapid, even sitting at the puter now, so they gave me a battery pack for portable use.

I wish all PALS could get the excellent care I get at VA.
 

Nuts

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Graybeard, the VA has been wornderful to us also. So glad the appointment went well for you. Is the new machine helping?
 

starente15

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Glad to hear it went well. Is rapid breathing at rest a sign you're close to needing the trach or is it when you feel your breathing is too compromised to be comfortable? Hope your wife feels better!
 

Graybeard

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I keep asking that same question about trach, Starship. Wifey is recuperating, I hope.

Pulmo wasn't finished with me until after 4:30, when they all go home. Push volunteers had all vanished, so one of the techs pushed me the 200 yards to the parking on his own time. Thanks to him. When I got to the car, I was so fatigued, I considered calling a cab. That would have made it awkward to retrieve the car, so I drove. Tank was on fumes, so I had to stop and pump gas, to boot. I haven't been the one driving the last 100 miles. I've always been the one in the family to run on fumes, so karma.

The new bipap is different, is all I can say so far.
 

Lilacs53

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So glad you are being taken care of by a good doctor Graybeard, hope your wife gets well soon. I sure wish that they would bring back the full service gas stations...we sure do need them.
 

Janie H

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I take rapid short breaths, no trach for me, my trilogy helps and 3 inhalers.

Janie
 

summerguy2007

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Janie, what are the 3 inhalers? When my breathing declines further I plan on a Trilogy rather than trach. Thanks.
 

Graybeard

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Have there been any estimates how much longer you can live with a trach, than with bipap?

I used a Trilogy for a long weekend, and found it large and cumbersome with its separate water supply. Laurie Gelb prefers the resmed I just got.
 

Nikki J

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With a trach and invasive ventilation theoretically ALS will not kill you if you also have a feeding tube. Eventually when your breathing gives out altogether bipap won't work. I say theoretically because there are risks from infection and immobility. But some people live for years on a vent. Look at Dianne for example and she is far from alone.
 

gooseberry

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Graybeard, the trilogy is a bit bulky and I am not sure steve sleeps any better with it. But, since the device isn't locked, I am able to adjust his settings when needed. This to me is the big plus of the machine.
 

Clearwater AL

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Graybeard, maybe just to make you smile for a minute.

About your comment about pumping gas... I used to tell my wife, "E" does not stand for Enough. :)
 

lgelb

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Again, any of the machines, not just the Trilogy, can be easily "unlocked." I can type the directions to do so for any of them in a sentence (your S9, included, GB -- do you need a manual? So glad you got this one!)

Access to the clinical menu allows every alarm to be adjusted to your needs, as well as the clinical settings if/as you want to now or down the road.
 

Graybeard

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It came with the manual, thanks Laurie. They had me sit in the lab hooked up to it for a half hour, and they said it would be automatic from then on. Haven't cracked the manual yet...

were they BSing me? They were upset when I told them I had adjusted the AVAPS on my own. The intern then gave me the numbers to put in it, disappeared for awhile, then presented me with the S9.
 

lgelb

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"Automatic" means a lot of things. Look at the screen when it's on -- copy the settings and data it shows -- prob they left it in iVAPS mode where the IPAP will change based on the preset volume target like the AVAPS did, but again as we did w/ that one, want to make sure their ranges are your ranges. I've found that min/max IPAP, target volume and backup rate are the most common overly-ambitious settings.

As for their being upset that you adjusted the settings, that comes under the category of _their_ problem. Yours is failing lungs.

See if they gave you the clinical or user manual. It's probably the latter.
 

gooseberry

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Graybeard...when we saw the pulmo at VA asked about what other doctors we would see for Steves breathing. The one we saw is specifically assigned to als patients. He does other work there of course but he is the only one I am told that sees the als patients. Maybe you got a routine pulmo the first time and the real deal this second time. Keep his name so you can ask specifically for him if need be.
 
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