Old 02-11-2018, 05:40 AM #106 (permalink)
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Default Re: Woke Up - Air Hunger

Pete...glad to see you rally! Thinking of you!
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Old 02-14-2018, 08:32 AM #107 (permalink)
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Default Re: Woke Up - Air Hunger

Hi Pete - I'm glad to hear you're doing better. Even though I haven't been on the boards, I still think about you and everyone else here.

Christine
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Old 02-21-2018, 10:40 AM #108 (permalink)
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Default Re: Woke Up - Air Hunger

Pete,
How are you doing. I haven't seen much of you on here.
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Old 02-21-2018, 11:15 AM #109 (permalink)
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Default Re: Woke Up - Air Hunger

The medecine keeps me going each day but the elephant on my chest gets heavier and heavier. typing is painful as my finger dont work and my voice is to weak for text to speach. trying to get all i can done for my family
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Old 02-21-2018, 11:33 AM #110 (permalink)
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Default Re: Woke Up - Air Hunger

I can emphathize with you. It was that way for my dad too. Do you have a cell phone stand that can hold up for you so you can type easier?
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Old 02-21-2018, 11:38 AM #111 (permalink)
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Default Re: Woke Up - Air Hunger

Pete, hugs from afar. You are always in my thoughts.

Sue
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Old 02-21-2018, 12:06 PM #112 (permalink)
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Default Re: Woke Up - Air Hunger

i use my laptop so i dont need a phone stand. we keep moving forward because it is right to do so
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Old 02-21-2018, 12:17 PM #113 (permalink)
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Default Re: Woke Up - Air Hunger

Sending big hugs.
I so know how you feel, I wake at night with that horrible feeling I am trying to keep calm. The doctor prescribed lorazepam which helps, we found out the hard way that I can't be off the bipap for more than a few minutes. I pass out then stop breathing. The hospital gave me a spare machine I'm now also using eyegaze which is fantastic.

I don't know what my fvc is and don't want to really, I am just concentrating on hanging on and looking forward to seeing my next grandchild due in july.

glad your new medication is helping.

wendy xx
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Old 02-21-2018, 03:35 PM #114 (permalink)
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Default Re: Woke Up - Air Hunger

Thanks for checking in, Pete!
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Old 02-21-2018, 06:03 PM #115 (permalink)
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Default Re: Woke Up - Air Hunger

sorry to report around 4 i started with another air hunger fit. nurse was here is increasing meds. cant where bipap as pressure hurts my diaphragm PT coming out to adjust - another slide downhill
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Old 02-21-2018, 06:10 PM #116 (permalink)
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Default Re: Woke Up - Air Hunger

Sorry to hear. I wish you no pain and no panic. Hope the adjustments will help you. Sending strength!
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Old 02-21-2018, 10:50 PM #117 (permalink)
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Default Re: Woke Up - Air Hunger

I would like to sit and virtually hold your hand Pete - such an awful disease, so many amazing people who should never have to go through any of this xxxx
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Old 02-22-2018, 12:56 AM #118 (permalink)
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Default Re: Woke Up - Air Hunger

Sorry to hear this, Pete. Make sure they adjust the trigger/cycle sensitivity as well as the pressure, as you may need shorter (most likely) or longer breaths these days.

Best,
Laurie
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Old 02-22-2018, 01:23 PM #119 (permalink)
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Default Re: Woke Up - Air Hunger

My thoughts are with you daily Pete. I'm so sorry your going through this. ALS is a beast. Hugs to you.
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Old 02-22-2018, 03:12 PM #120 (permalink)
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Default Re: Woke Up - Air Hunger

More hugs Pete, holding your hand from afar.

Hugs,

Sue
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