I can’t believe it has been 2 years since my gene therapy surgery. It does not seem like it has been that long. My kids have grown a lot, but my travel for work is consistent and frequent. Same with writing most this post, again on a plane at night. From sometime in September until now, I have not been in the same time zone for more than 10 days.
My wife was able to join me on this trip, for her first time to meet the doctors and staff. The doctors and staff seemed very interested to meet her. I am not sure if it is because I talk about her in our hours upon hours of testing, or if they needed confirmation that she existed.
Leaving our airport near our house, the gate agents said they were happy to see me traveling with my wife, as they normally see me alone. My wife laughed that everyone knew me at the airport. I said I kind of stick out with the cane and all, but I am here too much.
Overall all the tests went well. There was no statistical deviation from the pre-surgery results in the treated eye, but there is some degradation in the non-treated eye. The way I see it (pun intended), that means the gene therapy is a success. The 2 year mark is when the Oxford study published initial results, and I am hopeful that once all the other patients have their 2 year checkup that there will be good results published for this study as well. I did get to see some pictures of other people in the study though (not names, just patient numbers). I can now understand how Brett Sims has less difficulty getting around than I do, he has a lot more vision than me. Also the guy that wants to not be named, who I went to the bar a while ago has more field of vision than I do as well.
Part of our study is also participating in a functional MRI. Last year, in the MRI there is a part where they said relax. I was calculating numbers, as I am a nerd, and that is relaxing to me. The person watching the MRI asked me to stop thinking about numbers to instead think about being on a beach. I was impressed they knew that real time watching it. My wife says I can sleep anywhere, turns out she is right. I fell asleep in the MRI this time. I hope I was having a PG rated dream.
I signed the add-on paperwork this trip for the long term part of the study. Years 3 through 10 I will be going to Philly each year and then 11-15 will be emails/calls. It is strange to think that the only contracts I have ever signed for that long of a term is a mortgage and marriage.
Flying back home with my wife was quite funny. We were both tired from a long day, and I made a comment and she gently smacked my hand. The flight attendant saw it and ask if she smacked my hand. The flight attendant believed my wife that I deserved it and that I was not the victim. I do not agree with that conclusion.
I am hopeful that the results from this clinical trial will become a viable treatment to drastically improve the lives long term of all the people effected by Choroideremia, as well as future generations. I am honored to have been in this initial gene therapy clinical trial. I will continue to write about future testing I go though over the next ten years.