Clinic Today 6-3-15

Status
Not open for further replies.

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
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.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,760
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
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.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Nikki that does help. My only goal is to do what I can for my wife.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Oh under Bad; they also gave me walker and said they do not want me to use the cane as I am to "wobbly".
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,538
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
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. :)
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
976
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
A PEG provides a way of delivering food and water, neither being what I would consider extraordinary intervention.
Vincent
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
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
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
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.
 

nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,016
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
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?
 

nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,016
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Liquid meds are much more expensive even where available
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
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
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
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.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Just found out that my test make it so that I do qualify for DPS. Next stop meeting with the surgeon.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,760
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Terrific news! Thanks for sharing!
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
Good luck Pete! I hope you're able to get it.
 
Status
Not open for further replies.
Top