DPS, Diaphragm Pacing System

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Graybeard

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Joined
Sep 24, 2014
Messages
437
Reason
PALS
Diagnosis
12/2013
Country
US
State
Ca
City
Surf City
When I learned of this trial last July, my FVC was 70. The recruiting info said they were looking for PALS with 45-50%, so I waited until Oct to enter the trial. FVC was 50% by then, and to my shock, my phrenic nerves to my diaphragm were dead, so no DPS for me.

I didn't appreciate what I missed. I have been sleeping well with a bipap for over a year. Now I use it most of the day as well. I struggle to breathe enough just sitting at the keyboard without it. Making it portable means a ten pound battery pack and the bipap and hose and cables.

The DPS is a ten ounce box with four wires to the corners of the diaphragm. It is use as needed, like the bipap, except it uses the diaphragm muscle to breathe, instead of an air pump. Now I can see their claim of up to two years extended life.

I feel I cheated myself by not trying to enter when my FVC was 70%.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Graybeard, wow I am really sorry to hear this. I also am being told that I have to wait until I get to 50% for the study, but also because insurance will not pay for it until you get to 50%. Did they do your test lying down as well as sitting up? In early December I was 131% sitting but 71% lying prone. A week ago I was 85% sitting but they did not do prone. I wonder if prone would allow entrance to the study and get paid by insurance. As I was "breathing" onset I really would like to get this done.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,760
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Pete ask about having an ultrasound to assess your diaphragm function. It is being done at some clinics now to help you not miss the window and insist on getting a lying measurement
 
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