Old 01-27-2018, 05:39 AM #16 (permalink)
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Default Re: Woke Up - Air Hunger

What an honour it is to walk beside you Pete.

Remember it's not just morphine making you sleepy, you are probably building up CO2 and that will make you sleep, so don't hesitate to take the small doses regularly. It will help your wife a lot not to see you anxious with air hunger as well.

What a man you are!
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Old 01-27-2018, 07:20 AM #17 (permalink)
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Default Re: Woke Up - Air Hunger

Carey was holding me and crying last night before bed she has never done this before. All i colud think to do was to tell her that i love her, it came out as a muffled whisper but she understood..
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Old 01-27-2018, 07:21 AM #18 (permalink)
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Default Re: Woke Up - Air Hunger

trying to go without morphin this morning, was hoping it was just a bad day, but hunger is hitting hard and sweating and panic with it
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Old 01-27-2018, 07:27 AM #19 (permalink)
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Default Re: Woke Up - Air Hunger

Pete....your my hero. It's so brave and so kind of you to share your expieriences with all of us. My thoughts are with you.
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Old 01-27-2018, 08:39 AM #20 (permalink)
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Default Re: Woke Up - Air Hunger

yesterday when hospice nurse did o2 meter i was 95%. she sais it was probably because morphine relaxed muscles to where i could use trilogy. she also said if o2 is ggood then co2 retention is not high and not the reason for headaches or tiredness (she admits not knowing anything about ALS) does this sound right?
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Old 01-27-2018, 09:01 AM #21 (permalink)
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Default Re: Woke Up - Air Hunger

Pete, words are hardest with the people who mean the most to me. You are one of my heroes. Thank you for sharing and for letting us be with you.

I know nothing about your stage other than what I read here, but I have been told that small amounts of oxygen through the Trilogy are ok, and even necessary sometimes. Occasionally Matt will fall to 93 on the Trilogy, and I add 2 liters of o2. His pulmonologist, neurologist, and RT (all ALS specialists) say this is the right course. In the hospital they keep wanting to put Matt oxygen even without the trilogy, and I've been told to not panic at very low levels for a short time. Without the Trilogy, I think you need what makes you comfortable.

I hope you feel the love.

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Old 01-27-2018, 09:07 AM #22 (permalink)
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Default Re: Woke Up - Air Hunger

Hi Pete

I am at the same stage as you. Frequent air hunger and lungs very weak. I am struggling with morphine, it makes me stop breathing all together and my AVAP goes wild trying to force air in me. I feel like i am down to days.
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Old 01-27-2018, 09:08 AM #23 (permalink)
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Default Re: Woke Up - Air Hunger

Hey Pete, I am right there with ya except no morphine binds me up bad.
My breathing ,energy ,neck muscles etc have all taken a ride south .
Thanks for sharing your experience with us!
Sending you and you wife good thoughts and love
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Old 01-27-2018, 10:17 AM #24 (permalink)
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Dance party when we get to the other side
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Old 01-27-2018, 11:47 AM #25 (permalink)
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Default Re: Woke Up - Air Hunger

Hi Pete, you can definitely have high co2 with o2 in a normal range and headaches are often the first sign of co2 buildup as you know. Although an ABG is the most accurate way to measure your co2, a venous draw could tell you if it's high. Maybe the hospice nurse could do a draw and your doctor could review.
Have you been able to continue to tolerate and use your bipap? If you can it could really help to get rid of the co2. Kate
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Old 01-27-2018, 02:07 PM #26 (permalink)
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Default Re: Woke Up - Air Hunger

12PM EST in power recliner: cant breath, cant breath, get chair up, get mask offf, cant breath, Carey on phone with nurse, panicing, cant breath, regrets, crying, sory not stronger, cant breath, nurse says more morphine, panic, cant breat more tears, morphine makes tired, carey lightly scratches me relaxes all muscles, still hard to breath, chest shoulders arms hurt, calmind down, try bipap, recline back - sleep.
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Old 01-27-2018, 02:12 PM #27 (permalink)
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Default Re: Woke Up - Air Hunger

Hugs Pete I am holding you and your wife from here. You have been a blessing to all of us here both CALS and PALS alike. I hope we can be that same blessing to you now as you need it.

Hugs,

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Old 01-27-2018, 02:14 PM #28 (permalink)
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Default Re: Woke Up - Air Hunger

crying

love you Pete - let them give you as morphine as needed. it's time to just let them give you palliative care, for Carey's sake if not yours xxx
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Old 01-27-2018, 02:17 PM #29 (permalink)
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Prayers for you and Carey Pete. Peace be with you friend
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Old 01-27-2018, 02:44 PM #30 (permalink)
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Default Re: Woke Up - Air Hunger

So sorry Pete for what you and your wife are going through. Hoping for peace and comfort .
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