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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
kay, i am glad you are relaxed. i wish i could get out of this state of distress. keep on looking at the sunny side. i think of your journey alot too.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
961
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
hi Pete. Here we are still here! I spend more days in bed and up the Ativan when feeling distressed at all. You have more on your plate to worry about your son too.

this is tough, the hardest part leaving all my wonderful friends and family. But today feeling pretty good.

love ya Pete!
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,810
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Happy to see you check in Kay. Still in my thoughts and prayers.

Luv ya
 

Now stay at home dad

Active member
Joined
Oct 7, 2015
Messages
33
Reason
PALS
Diagnosis
09/2015
Country
US
State
CA
City
Coarsegold
I feel I am in the same boat as you and Pete. Some days it's a constant struggle trying to breath and others I feel I have some good hours of breathing without complication and then the struggles start again. I'm sorry you're going through this as well. It is torture.

How long will this last? Sometimes I think I am overreacting and think maybe I can live like this for a while. Then there are days where I just want to sleep and cannot because I can't breath well and can't wait for this to end. It's all so confusing for me. Should I be doing something to help ease toward the end? Are either of you on hospice? I wonder if they help with that. Anyway, sorry for the rant. I wish you and anyone else didn't have to go through this.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
961
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
Pete and I both on hospice. My group helps manage anxiety air hunger and pain. I chose choose when I want to e lucid and when I just want you to sleep. I told them my highest priority was comfort.


feel like I'm stable since this thread was started. Taking it one day at time, but pain very managers able. Ativan and marijuana combo makes me slip away in peaceful sleep
!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Beautiful Kay, you are so high in my thoughts every day.

I know from experience that the key is allowing the meds to be given at the frequency and level needed. I'm so glad you are able to be kept comfortable this way and yet have those times of lucidity. It was the same with Chris. He had some quite lucid periods, but he was kept peaceful and without pain or fear.

I draw a lot of comfort from knowing you are being held in this place during this last phase. Many gentle hugs to you my friend xxx
 

jjbell

Member
Joined
Aug 27, 2018
Messages
25
Reason
CALS
Diagnosis
07/2018
Country
UK
State
England
City
Newton Aycliffe
Very sad. My hubby Jim is finding it hard to breathe now.😕 He has tried CBD oil and it seems to help. I am getting him a nebulizer today.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
961
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
FB93731B-915A-46F1-BE95-89E0D27B74EA.jpg

since coming up with the right drug cocktail of Ativan and mj I've felt so much better. Lungs sounds better as reported by hospice nurse. This reprieve has gone on three weeks. It's strange but I'm going to enjoy while I can. Went to our local zoo for short outing with grandkids and helpful! Caregivers!
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
961
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson

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MarieLaure

Distinguished member
Forum Supporter
Joined
May 16, 2018
Messages
257
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
Yes kick it kids ! Great !
 

NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
106
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
City
Anaheim
That picture made me so happy today! I'm so glad you're able to go outside and enjoy the day. Looking great!

Rob
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
oh LOVE IT - so good to see you making the most of every moment Kay xxx
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,265
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
City
Mahomet
Thank you for posting. As one who is starting this journey it is very helpful to be able to put together a map to follow using the successes of those on the same trail.
 

Jlynn

Distinguished member
Joined
Mar 16, 2016
Messages
415
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
City
Wolfeboro
Thanks for sharing your beautiful pictures! They really made me smile. I'm so happy that you were able to get out and have taken advantage of the opportunity. Wonderful.
 
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