1 Year Checkup

My 1 year checkup started on 2/16/16. I can barely believe it has been a year since surgery. With surgery, checkups and work travel I feel like I was on a plane for half the year. If you are wondering, yes I am writing this on my phone on my flight too at about 10-11pm(not sure what time zone I am in right now). This past year I have been on a total of 105 flight segments and left the country 14 times. If I continue on this pace, my passport will run out of pages later this year and need to get pages added to it.

If you have ever seen the movie “Up in the Air” with George Clooney, his comments are way too accurate about travel. He comments that you can live out of a backpack, and I can attest to that. I only carry a backpack when I travel, that can fit under the seat in front of me. Anyone using a cane can understand how difficult it is to pull a rolling bag with one hand and use a cane in the other hand. You never have a hand free to open a door, hold an escalator hand rail or hold a ticket.

I have noticed in the last 6 months that my treated eye is now my dominant eye. I see less glare and have slightly better acuity for the treated eye. These are personal observations that I notice.We did all the fun tests like normal. We also added a couple tests back from baseline testing like the Fundas photos. Thankfully the ERG was not on the list. I really hate that test.

Based on the results from the 1 year checkup, my treated eye is still at baseline. I know a lot of people wanted to see results that are improved from baseline, but remember that the goal is to not get worse. This is a success to me. It is still a little early to be definitive, because the degradation of CHM is extremely slow. I head back in another 6 months for the 1.5 year checkup. I would much rather visit Philadelphia in the August time of year than the February time of year.

I plan to be at the CRF conference in Philadelphia in June. I hope I see you there.

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2 thoughts on “1 Year Checkup

  1. Hi Garry here, a fellow CHMer from Australia. Got onto your Blog via your liunk in the Yahoo Groups CHM list. Thanks so much for posting this stuff up. Its great to have a first hand account of where the gene therapy is going and the effects its having. As you say no further deterioration IS a win! Keep up the good work, I will keep an “eye” out for further info!

    Liked by 1 person

  2. Curt….. Please know that you are an inspiration to me and I admire you! Should you guys ever have an opportunity to travel to New Orleans, we’d LOVE to have you and yours!! The door is always open! ( and… You have some pretty good babysitters!!) Love ya, Cathy

    Sent from my iPhone

    >

    Liked by 1 person

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