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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
Bad News; My seated FVC down to 68% from 85% my prone down to 48% from 67%, right hand strength and left leg down approx 25%, clinic visits moved from 3 months to two months. Concern about my neck and chewing.

Good News; FVC now qualifies me for DPS (Diaphragm Pace making System), they did blood work for CO2 levels and SNIF X-Ray to test if diaphragm still works. Doc not sure if DPS will help but as I wont do vent he thinks that it is logical option. Should know tomorrow if test will qualify me.

Decision; If they do DPS they will probably want to insert a PEG (feeding tube) at the same time. I was against doing but talking with the doctor I am now not sure what to do.
 
I hope you qualify Pete. Yes it is standard to do both together if you are going to have them.
For what it is worth I am in favor of a feeding tube for a number of reasons but one is to spare your loved ones pain and suffering. My mom did not want one. Years later I am still traumatized by the memory of trying to feed her smaller and smaller amounts and seeing her choke more and more. My sister delayed getting one and we went very far down that choking path again. It was horrible. She is glad she got her tube now.
 
Nikki that does help. My only goal is to do what I can for my wife.
 
Oh under Bad; they also gave me walker and said they do not want me to use the cane as I am to "wobbly".
 
Pete, I do hope you qualify for the DPS. The folks at our clinic are strong proponents of it. As for giving up the cane being bad news. No it's not. The bad news is that you are too wobbly. That they told you to stop using it and you listened is (from a CALS persepctive) good news that follows the bad. :)
 
A PEG provides a way of delivering food and water, neither being what I would consider extraordinary intervention.
Vincent
 
Time to do what is necessary for the future, I got my PEG 1/14, didn't use it for food til a couple months ago, I never thought about the choking memories, something to think about.

Janie
 
The peg gives you an option for calories at want and fluid when you are tired and dont want to deal. Meds can also be crushed and put down it. Its a way to keep you comfortable.
 
After some bad peg experiences I'm glad I got it. Take about 50% of my nutrition that way now. For melds, what do you do for ones that only come in capsules or gel caps?
 
Liquid meds are much more expensive even where available
 
As long as the medication is not a sustained release medication, it can be crushed and mixed with water and put through the tube. The night that it appeared that Tim might be having a gallbladder attack, I used his McKey to aspirate all liquids and air from his stomach so there wouldn't be anything to vomit up and give his gut a break. After his nausea settled a bit I crushed the meds I gave him, and put it in through the tube with only enough water to get them in. Tim got his PEG tube 2 years ago, and it was switched to a McKey as soon as the track was healed, and so far has not needed it for food. It is also nice to have for the times I forgot to give his meds and put him into bed. He can only swallow while in his chair, so I just put them down the tube. He doesn't mind it a all.
Paulette
 
For me the Meds are not an issue as I do not take any and until morphine I have no intention to. Why dull this "wonderful" experience.
 
Just found out that my test make it so that I do qualify for DPS. Next stop meeting with the surgeon.
 
Terrific news! Thanks for sharing!
 
Good luck Pete! I hope you're able to get it.
 
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