I’ve attempted to keep the following health information private until a later date, but as word has started to spread among family and friends, I feel the need to at least give an update so that it comes directly from me.
I will be having brain surgery on the 21st of this month, which will hopefully allow for some normalcy after being diagnosed with a rare disease back in May. Over the course of 3 years, I was led down several paths, such as MS and Lupus, but everything turned out negative. All the while, my symptoms continued to expand. Finally, after visiting a new doctor this past May, I was able to get proper testing and be sent to the right specialists who were able to correctly diagnose what was going on.
Unfortunately, due to multiple misdiagnosis, time has lapsed, and I’m now experiencing seizures, speech and cognitive deficits, and am losing my vision. My peripheral vision is gone, and I’m experiencing intermittent blindness. Due to the experimental medication I’m having to take to try and save my eye sight and brain function until the surgery, I am now in stage 3 kidney and liver failure. This surgery should allow me to come off of this medication, save my vision and alleviate the symptoms from the disease.
This surgery is emergent and would have happened last week, but due to the multiple strokes from the last several years, I was placed on blood thinners, and I must be off of these medications for 10 days before they can proceed with the surgery.
I’ve tried the few medications available that can help with this disease, but they either don’t work or my body rejects them, as is the case at the moment with the medication I’m taking until surgery.
If this is left untreated or if the surgery is not a success, the life expectancy is between 3 and 5 years.
At this point, I’m praying for a miracle.
I covet your thoughts and prayers during this time for myself, but even more importantly, for my wife and kids.