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tripete

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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.
 

Nuts

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Pete, I'm so sorry. Another gut wrenching event.
 

Jeanau

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I'm sorry Pete. I do understand your feelings...if I want or don't want to do something for my ALS, I want it to be my decision. I don't want the decision taken out of my hands, even though I might decide against something, I want to be the one who makes the decision. I guess it is just human nature to feel that we have at least some control in this uncontrollable disease.
 

affected

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I'm sorry it didn't get to be totally your decision Pete, that really sucks.

I don't understand why the clinics are not more proactive in getting PALS to the DPS inside that window of opportunity.

But, done is done, or IIWII.

Just make sure with the PEG that you get to make the decision on it. Be proactive for yourself if you decide you do want to opt for it. If you decide not to, then that at least was your own decision to control.

hugs
 

tripete

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I don't understand why the clinics are not more proactive in getting PALS to the DPS inside that window of opportunity.
As I have come to understand it there are two reasons for this;

First is that DPS is still experimental for ALS and whether it will be beneficial and if so in what casest is not yet known.

And probably the bigger driving force is that the insurance companies will not pay for it until you reach certain qualifying marks on your breathing tests. Unfortunately these marks where set for non ALS patients getting DPS for other issues. It appears though for most ALS patients that by the time they meet the insurance qualifications it is because to much of the diaphragm is paralyzed and then there is no benefit.

The world is ruled by money and those who have it. For those of us who have to rely on insurance it just does not work.

My hope now is that I hold onto the use of my limbs and that my breathing fails first so that I do not become a "problem of care" for my family.
 

starente15

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So sorry Pete
 

Barbie

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that sucks Pete.
 

djbailey

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My wife is on the DPS and has elected to stay on it. I also believe everyone should have as much info as they can before making a decision like this. Sorry it was taken out of your hands. But, if you want to feel a little better about it take a look at the trial they had in the UK. You can google it using DAP, UK, Trial, DiPALS. They stopped the trial early and you should read the results.
 

hjlindley

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I think every situation is different. I have no sisters, brothers, or children. My cousins are scattered all over the United States. I have made my wishes quite clear. I will not do anything to stop the disease process in less it makes me uncomfortable. I'm extremely lucky that I bought long-term care insurance 20 years ago and it pays for an aide all the hours that my husband is not here. But he still has to do all the cooking and all the bill paying and get me into bed at night, up in the morning, and is taking a toll on him.
 

Nikki J

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Interesting and disturbing. The details of the study were not revealed in the summary I found but given the locations and the doctors involved I think it must have been properly designed and the patients truly randomized. It did not list there the respiratory parameters for inclusion/ exclusion. I wonder if they are different than here in the US?
 

DreamsEnd

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So sorry Pete that you couldn't make your own choice here. Your feelings are completely understandable.

Sherry
 

anderkling

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It's indeed disappointing, Pete, that you are not given this chance. I wish it were otherwise. I feel badly for you. Your faith is strong and will carry you through even this. I'm so sorry.
-Charlene
 

patrick123

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When I had my DPS put in the peramiters were your FVC need to be above 50 and below 68 with an active phrenic nerve. If you think about it's a very small window.

Patrick
 
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