Hello and thanks for being patient for our results. The tests my husband had this week were unfamiliar to me as we have not been given (or offered) them in Atlanta so I will explain them assuming you all have not seen them either. Forgive me if I tell you something you already know. We began the day with a Fluoroscopy which is a "real time" x-ray-for lack of a better explanation. It allowed us to actually watch his diaphragm as he took breaths. Unfortunately he has almost no movement of the diaphragm at this point and they were surprised to see more movement while he was resting as opposed to when he was asked to take a deep breath. Then came the unpleasant part, the phrenic nerve testing. They literally applied electricity to his neck in an attempt to stimulate the branches, left and right, of the phrenic nerve. They explained to us that this is the nerve that is telling the brain to tell the diaphragm that it needs to move. This nerve has to have some remaining function in order for them to implant the pacer. They were able to stimulate and find some function in one side but not the other. But when meeting with Dr. Onders later he explained that this nerve is located deep in the neck and can be difficult to locate therefore a false negative is possible on with the testing and seemed somewhat likely since they found function in the opposite side. My husband said this was the worse part of the testing. After that he went for some pulmonary testing. A blood gas was taken to determine his oxygen-carbon dioxide exchange. His was one point from a normal test which was a little surprising to us all I think considering that his diaphragm barely moves. But they can't really explain that just like they can't explain anything else that is happening to him. They also did the all to familiar FVC test that we seem to dread more than anything. We were shocked, or I was, to find out if had fallen from 44% to 37% just since our last clinic on Nov. 12. I'm not really sure how accurate this seemingly simple test is being that there can be other factors like how well does your mouth seal on the mouthpiece if your lips and mouth are being affected. My husband also expresses that he experiences extreme anxiety when asked to do this test for fear of scoring badly. That in itself constrict vessels, raise blood pressure etc., makes his feel he need to breathe quicker which ruins his test. ? Anyway, then we met with Dr. Onders. To our surprise he seemed positive. My husband and I went there assuming he would not qualify because we knew his breathing was pretty diminished at this point. So if we were told no we wouldn't be disappointed and we could move on to other things. But the doc explained that since they did find life remaining in the phrenic nerve he believed he could implant the diaphragm pacer but the results of therapy of course remain to be seen. He did let us know that if while doing the surgery he could not stimulate the nerve he would simple place his PEG and not the pacer. They require you have the PEG placed at the same time which would work perfect for us because we had that scheduled for this upcoming week anyway.
I was a little surprised, again, that my husband didn't immediately agree to this. He wasn't sure at the time it would be worth the effort I think because of his diminished breathing function and you know all those crazy risks they have to tell you about with any surgery that only happens to one out of about a million patients. After some driving and discussion he agreed to give it a try. My obstacle now is the dreaded financial part of the process. They are very close to getting FDA approval and are only wading through all the red tape BS for the final approval. But since the approval is not yet complete his medicare won't pay a penny. Fortunately he is an Air Force Veteran and has his disability with the VA. I am now feverishly making calls to get an "AUTHORIZATION" for treatment from a non-VA facility. I think I can accomplish this because there have been others including a General that have undergone this procedure with financial backing from the VA. The question is how much BS to I have to get through and how fast. Our clock is feverishly ticking with his breathing and we need to get it done now.
I'm not sure what else to include and I apologize, I didn't set out to write an essay here. I just wanted to be as informative as possible for everyone. I will of course check back periodically to see if anyone has any questions that I can answer. I myself have seen where some of you are trying to get approval from some insurance. Are these just private insurance carriers or what? Are you having to provide endless documentation for approval for the surgery? I didn't think any insurance would touch this procedure pending FDA approval. Anything I can use to support our claim would be helpful if anyone has any info. to share. Again, I will check back for questions and I hope everyone is feeling well today. I think all my husband can really think about is that National Championship Game tomorrow night and trying to figure out how to keep the TV and satellite on if our impending snow/ice storm hits today. Generators have been mentioned-Home Depot here I come!
He would enjoy nothing more than to see the Auburn Tigers win tomorrow night! He would say "WAR EAGLE" (if he was out of the bed yet)! haha
