tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
I had my visit this morning to discuss getting the DPS (Diaphragm Pacing System) installed. For those who do not know this is where they surgically place electrodes on your diaphragm to stimulate the muscle. Wires come out of the side of your stomach and attach to a small box that controls the electrical pulses. This has helped other types of diseases where the diaphragm muscle can be strengthened but is still "experimental" with ALS.
While my numbers, FVC and MIP qualified me for it along with a good Arterial Blood O2 level, the doctor thought my diaphragm was to far gone to make the risk worth the potential reward. Apparently a good portion of my diaphragm no longer functions so the Pacer would do very little good, and the risk of a surgery that requires anesthesia would be high given my rapid breathing decline.
I was leaning away from having it done anyway, but found myself very discouraged to hear that my diaphragm was dying, and to have the disease remove the choice from me.
After speaking with the doctor we will put off the PEG/RIG (feeding tube) decision until another time as my swallowing still works. This I am probably going to decline as I have a hard time seeing the point of dragging this hell out for me or my wife.
While my numbers, FVC and MIP qualified me for it along with a good Arterial Blood O2 level, the doctor thought my diaphragm was to far gone to make the risk worth the potential reward. Apparently a good portion of my diaphragm no longer functions so the Pacer would do very little good, and the risk of a surgery that requires anesthesia would be high given my rapid breathing decline.
I was leaning away from having it done anyway, but found myself very discouraged to hear that my diaphragm was dying, and to have the disease remove the choice from me.
After speaking with the doctor we will put off the PEG/RIG (feeding tube) decision until another time as my swallowing still works. This I am probably going to decline as I have a hard time seeing the point of dragging this hell out for me or my wife.