Tests passed! Surgery Ahead!

Early this morning I drove to Hershey Med Center for a "Sniff Test" Fluoroscopy X-ray series in the Radiology department and an Arterial Blood Gas test to determine if I am a candidate for the NeuRx Diaphragm Pacing System™  as well as a PEG feeding tube.  You have to have adequate diaphragm movement and good lung function prior to the pacer being installed, which is the reason for the two tests.  I got the results back this afternoon indicating that I passed both tests, so the next step is to talk to the surgeon. 

I wasn't prepared for the long walks from the parking garage to the hospital, then to radiology, and then to the pulmonary center, and back to the garage, and I struggled a bit walking so far - weak leg muscles, not out of breath.  I stopped on the way home and bought a lightweight aluminum cane to provide stability when I have to walk a long way or through the ice/snow/salt as I also had to contend with this morning.

They can perform the implantation procedure for both devices in the same surgery in the outpatient center at Hershey, so unless there would be complications I would be home the same day to start recovery.  It will take a little bit of time to heal from the procedure, so I would not be able to go to work for a while, but I might be able to work from home. I previously asked if I would be able to swim or go to the beach with either device and was assured that would not be a problem.

I got some indication from work last week that they were willing to consider my request to work from home, so that is great news!  They told me that they want me to focus on having the procedures done and whatever recovery is required before worrying about working from home.  HR sent me the short term disability forms to fill out and to have my doctor fill out before the procedures are done.

The decision is made, I am moving forward.  I wasn't ready in December, but I am now.

Another PALS published some information about a small ALS drug study for Genervon GM604 and started a petition on Change.org to encourage the FDA to fast track the drug for all ALS patients.  Genervon is meeting with the FDA next month to discuss this, so please go to the Change.org website and sign the petition: FDA Accelerated Approval of Genervon's GM604 for Use In ALS.