decision day

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gooseberry

Extremely helpful member
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Jul 2, 2014
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3,501
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Lost a loved one
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5/2014
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Tampa
Steve has another round of pulmonary function testing tomorrow. It is supposed to decide whether we can go out west in five weeks on our trip. I hope so because we all need it and steve is really looking forward to it.
 
I'll say a prayer for you tonight. I can tell you the pulmonary function testing is the scariest part of the clinic for me.
I so hope you get to go enjoy yourselves, and in some small way forget for just a little while this horror.
 
Adding my prayers and good thoughts for you tomorrow
 
Good luck. Find out if the bipap machine will work in the car. Mine plugs right in to the lighter port.
Vincent
 
Hi Steph,all the best for the appointment.
God bless, Janelle x
 
I don't see why you shouldn't go, as long as he's comfortable on the BiPAP. He is the best judge. Bring a small plastic bottle for refilling w/ distilled water at night, and enjoy!

You and/or risk-averse docs can always find reasons not to go. Just ask yourself what would bother you two more, Steve breathing his last somewhere in the West, or breathing his last wishing you'd done the trip. Generally, the only trips you regret are the ones you don't take.
 
Can I ask what is involved in the pulmonary function tests? Raymond has had just one visit to a clinic, and they did a breathing test where he exhaled and they measured the pressure he was able to exert, sound right? He was at 54%, he also uses a bipap every night, and has for over a year. Is there a time frame for the loss of function, or is it like all else in the ALS world, person dependent. Can I ask why his pulmonary function test determines whether you go on your trip? I was hoping Raymond and I could road trip some this summer when I'm out of school, but now I'm wondering if it's a good idea. What was Steve's last test? Sorry if I'm being too personal. :-/ things are ramping up for us, and I'm beginning to worry (understatement of the year!)
Grace
 
It's like everything else no one knows what goes next or how fast or whether a plateau is reached before the next loss. The only sure thing is the end result.
If fvc is low and you go to high altitude there is less air pressure- makes it even harder to breathe.
My fvc was 75 in July, 53 in October, and 63 in Feb. go figure.
There are different parts of pulmonary function tests fvc MIPS and mess measure inhalation exhalation and how much air you can expel. All involve different muscle groups.
 
good news....things remain stable....so off to the west and the mountains we go.....the concern has been steve's fvc which has been measured at 20% but now at the va ranges 30-48%. His inspiratory and expiratory pressures are stable. The only decline per se is when laying at 30 degrees. His oxygen sats dropped significantly so he has to repeat the test 2weeks before we go. They will give him some oxygen to take to use with the trilogy if needed.

Gracious99-Steve's als is respiratory onset and the concern was being at high elevation with low fvc, mip,mep,oxygen, etc. It really is an individual thing as to how things progress. The testing at the va has been much more stable and not all over the board. I think he gets a better mouth seal.
 
Wahoo! So happy to hear this! There are so many variables with the testing especially seal but also time of day having just eaten etc
 
Great news!
God bless, Janelle x
 
That's great news. I hope you have a fantastic adventure!
-Michael
 
this will be the trip of your life!

glad you are going!
 
If you are going up in altitude, Steph, you should know how to adjust the Trilogy, that's all. As you know, supplemental O2 is not usually a good idea--but you might even drop his target volume if he can't deal w/ the pressure range it entails as you go up, or vice versa if he feels he needs more air. Obviously, if a 30 degree angle isn't good, that's what beds and pillows are for. And if the air gets drier, might need to up the humidification setting since the Trilogy doesn't automatically adjust, as I recall.

Glad you are making it out.
 
Thanks for the info everyone, I think the issue might have been the seal around the mouthpiece, or at least part of the issue. Great news for you and Steve, I hope you can relax and enjoy the time together! Many blessings to you!
Grace <3
 
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