Old 07-08-2018, 07:37 PM #1 (permalink)
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Default Is this the end?

Waking with headaches several times at night and during the day. RT says AVAP can not be tuned more. Was cold all the time now having hot spells. Skin has become blotchy. Can't stay awake for 30 minutes ....
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Old 07-08-2018, 08:18 PM #2 (permalink)
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Default Re: Is this the end?

Hi KW1234.. I wish you peace.. Enjoy your sleeping and the sweetest of dreams. I hope the headaches subside some even with medication. What a trial for all of us and I hope for Miracles for all and especially you.. Sleep well friend.. TIANDB
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Old 07-08-2018, 08:21 PM #3 (permalink)
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Default Re: Is this the end?

Keep thinking about you in the last months and that at some point you won't write here anymore maybe because it's too exhausting to keep your eyes open, maybe because you finally slipped away.

I can't answer your question at all. As you yourself think about the end I want to send some good thoughts for constant comfort and painlessness.
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Old 07-08-2018, 08:27 PM #4 (permalink)
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Default Re: Is this the end?

Your nurse can tell you better ( I think you have hospice or home care) and I feel we often sense it for ourselves too. Wishing you peace and comfort that I know you long for.

In case we don’t speak again thank you for all you have given and shared here

God speed
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Old 07-08-2018, 09:09 PM #5 (permalink)
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Default Re: Is this the end?

Hi Karen,

I do think about you often. I canít answer your question, but I wish you peace and comfort no matter what. A peaceful sleep is a beautiful thing.

May your dreams be sweet and your waking moments filled with love.
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Old 07-08-2018, 10:11 PM #6 (permalink)
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Default Re: Is this the end?

With so little air and nutrition for such a long time, you'll certainly have little strength to stay awake. Hoping your dreams include flying, like they used to.


Smokey or chunky-looking urine would be one indicator to look at. That often means organ shutdown.


If this is it, then I hope you finally get your dance party on the other side.
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Old 07-08-2018, 10:23 PM #7 (permalink)
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Default Re: Is this the end?

Sending huge hugs Karen and thoughts of peace and comfort

Hugs,
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Old 07-08-2018, 10:24 PM #8 (permalink)
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Default Re: Is this the end?

Of course the AVAPS can be "tuned more!" If you are retaining CO2 at high settings, it may be time to dial down IPAP/Vt and/or adjust the trigger sensitivity. LMK if you need help with adjustment.

Best,
Laurie
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Old 07-08-2018, 11:00 PM #9 (permalink)
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We are all with you Karen and I hope you fly and soar high without fear. xxx
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Old 07-09-2018, 10:42 AM #10 (permalink)
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I don't know the answer, but I wish you peace and serenity during this time.
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Old 07-09-2018, 10:50 AM #11 (permalink)
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Thinking about you, Karen. I'm hoping you are surrounded by peace and love.
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Old 07-09-2018, 11:18 AM #12 (permalink)
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Default Re: Is this the end?

thinking of you Karen with warm thoughts of love. I had same thought Laurie mentioned. But if this is it, fly free from this earthly pain and be at peace at last.
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Old 07-10-2018, 06:49 AM #13 (permalink)
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Default Re: Is this the end?

all the best Karen if this is it I know like for myself it will be a relief. you have suffered long please find what ever peace you can. i hope to join you on the journey soon.

all my best Peter
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Old 07-10-2018, 09:42 AM #14 (permalink)
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Default Re: Is this the end?

Karen, You are being held close in thought and heart, wrapped in a gentle mantle of love. May you feel comforted and at peace. Bea. (new to als)
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Old 07-13-2018, 01:05 AM #15 (permalink)
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Default Re: Is this the end?

Our Hospice nurse told us when the end was coming. If youíre not on a trach., they can tell from listening to your lungs. Dad had up and down days for a while, then out of the blue one day the hospice nurse said he was barely getting any air, but to me he looked about the same. About a week later dad told me not to take his trilogy mask off because he felt something different and knew he couldnít breath. Later that day hospice confirmed that. He went into a coma about 3 days later and I took his mask off. Easiest and hardest thing Iíve ever done in my life. Dad didnít move a muscle all day, but he lifted his hand up to his face right afte I took it off as if to say I did the right thing. He didnít struggle much and my wife and I just held his hand for a couple hours. I got up for 2 minutes to use the bathroom and when I came back he was taking his last breaths. I truly believe he tried to die when I stepped out.
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