GVHD Eye trial

Thank you everybody who share their ideas ideas, suggestion, etc.

I am now starting a trial, an unexpected trial, for my left eye.

Unfortunately it's an off-label use drug trial, not a clinical trial that the company pays for and not something insurance will cover.

Imagine the shock when I saw this sign at the pharamcy.

Thanks to you who have donated to my medical costs. You've eased the burden of my new $150 every 3 week medication.

 I'll be using the medication in my left eye only with the right eye as a control.

When Dr. Jon first looked into my left eye a sudden heavy silence fell over the room.

I know this silence. I'm too familiar with it.

It's the "Oh, that is baaaaadddd." Silence.
It's the "i-need-to-get-a-good-look-and-think" silence.

Dr. Josh took his time and I sat fidgeting wondering how bad it was.  When he rolled back to his desk he started immediately talking treatment.

This is what I like: options. I had severe dryness, inflammation and irritation or GVHD of the left eye only. We plugged my upper tear duct to lock in moisture. He wrote a script for azythrmycin eye ointment to use as an eyegel.

You know if it's bad on the cornea research floor at Mass Eye and Ear its bad. He said I may be a candidate for a special eye patch, but Dr.Dana had put the cabosh on contacts years ago due to infection risk.

 I am the perfect candidate for this trial. Dr. Jon verified I had tried everything else possible including: photopheresis, prophylactic doxyclyxline, artificial tears, twice daily hot compresses for 10minM flax seed oil, fish oil, restasis, eye plugs, RX contacts, eye flushing and on and on.

I knew what was coming. Dr.Dana has been after me for this trial forever, waiting for the perfect conditions where not only would I do the study, but I would pay for it. The time came.

Eye pain is the most excruciating followed by lung/rib pain then by abdominal pain. That's my opinion based on my experience.

As a perk, I do get upped to a special, priority patient status with the eye guru himself. I think if I had asked and resisted the trial from fear, I could have finagled his pager number, if not a cell or home phone number for access to the best eye care anytime, as an incentive to get me to sign on, but I did anyway.

After the new plug, the removal of the microfilaments, and two doses of the drops I'm feeling relief, but time will tell the rest.