A Message From Our Good Friend Jackiemax

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Paty

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TO ALL MEMBERS OF THE FORUMS:

I WAS ASKED BY OUR GOOD FRIEND JACKIEMAX (CAREGIVER TO HUSBAND HORACE), TO POST THE FOLLOWING MESSAGE:

This is how she e.mailed it to me yesterday Saturday May 5th, but which I read till today Sunday, May 8th at 10:00 p.m.

Paty:
We went to Vanderbilt Als Clinic yesterday for his second breathing test. she said he had only a few more months to live. knocked the wind out of me.


I AM REALLY AMAZED HOW CAN THEY TELL SOMEONE THIS WITH THAT CERTAINTY, LET'S GIVE JACKIE OUR SUPPORT.

PATY
HUSBAND'S CAREGIVER DX 10/17/05
BAJA CALIFORNIA, MEXICO
 

mandem

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Jackie
An extra prayer for both of you tonight. Be strong when you can, lean on those who are there for you when you need to. I can only think I know what it may feel like to hear something like that.
Look within yourself for we are all stronger than we know. That and our faith are sometimes all we have and many times, everything we need.
God Bless You
 

CindyM

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Jackie-I am so sorry. These are real tough times for you and your family. My thoughts are with you today. Cindy
 

shellshell

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I am so sorry Jackiemax...My prayers and thoughts are with you as well as many many others on this forum. You all have gotten me thru many hard times lately and I so appreicate the support.

Jackiemax, remember there is a higher being that has the last word on when he is ready for us to come home. The doctors are wonderful but they don't know EVERYTHING!

Love
Michelle
 

liz

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Jackiemax -

I'm awfully sorry to hear of Horace's decline. You have taken such good care of him. Have Hospice services been offered to you? They could help take care of you both during this difficult time.

Liz
 

Al

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Jackie. I am so sorry to hear this news. Our thoughts are with you and Horace.
AL.
 

vmd

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Jackie:

You and your husband are in my prayers.
 

joelc

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Jackiemax,
You and Horace are in my prayers as well.
 

terri

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jackie

Oh Jackie, I am so sorry to hear that the doctor's think this. Take good care of yourself and God bless.
 

JACKIEMAX

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from jackiemax

thank all of you who posted and who are praying for us. horace had already determined in his mind that he might not even last another year as his breathing is becoming so very very difficult for him.

the pulmonary specialist who gave him his second breathing test said that his breathing capacity was now at 78, and when it got down to 30, that would be the very dangerous stage for him.

i asked her how long it took to get from 78 to 30, - years, months, weeks - and she said 'it is difficult to say, but in this case i will say 'months' 'maybe, a year, but he is losing ground steadily.

he is so weak, esp. his back and legs, that he is now in a wheelchair and using his bipap much more often.

i hope with all my heart that the dr. is wrong, but it is painful to watch him suffer. i will try and come to the forum every day that i can - it has helped me soooo much.

love to all. jackiemX
 

liz

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Is Horace on a Bipap or considering a vent?
 

quadbliss

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Hi jackiemX,

I lived for two full years on 24/7 Bi-Pap after I could no longer draw a breath on my own. This prepared me psychologically for a vent. The transition was easy. I have never regretted venting. :-D

Mike
http://mikebougher.com
 

JACKIEMAX

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update from jackiemax regarding horace

hello all,

we went back to vanderbilt als clinic today for an evaluation by his als specialist. she looked at his latest breathing test taken last week, and concurred with the opinion given us by the pulmonary specialist - that his respiratory problems were deteriorating at a rapid speed, also his overall weakness, etc.

she told us both that she could not say 'how many months', but that it would just be a matter of months.

nothing was said about 'venting'. he has been on a bipap for several months now, and she suggests he use it more often during the day.

thank all of you who posted and for keeping us in your prayers.

jackiemax
 

hboyajian

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Both of you are in my prayers tonight. Whatever happens, I am certain the love you have for each other will carry you through.
I have experienced, and I have heard others speak of a negative attitude toward the tracheostomy/ventilator decision on the part of many doctors. If this is a potential choice for your family, I think it is important to have this discussion with your loved ones, research the options for 24 hour maintenance and care (what family members could participate in this and what assistance would need to be hired) and be ready to strongly advocate for what you want. Quadbliss and others are a great resource for information and personal experience.
If the decision about getting a vent or not hasn't been made yet at the time of a breathing crisis, it may be possible to go on a temporary ventilator (intubation) in emergency care to allow the PALS time to make the choice. Sometimes, a person may not know exactly what they want until the moment arrives. The temporary vent can also allow family members to get there to say goodbye.
Having said all this, I sincerely hope you have much more time yet together than the doctors are saying may be expected. God bless.
 

Poco

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Jackie,

I am really sorry. I wish I could hug you right now.
Phyl
 
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