Hey everyone I was recently diagnosed in early December of 2010 kinda needed some space to vent and just put life out there. This came just in time for my finals for college at CU Boulder. During finals I ended up screening for the defend 2 trial. During the screening at the Barbara Davis center I was shown other trials they had running at the same time and trials they would hopefully be starting soon. This is where I learned about the Retain trials by the immune tolerance network. It’s an open label dosing trial for alpha-1 antitrypsan (AAT) in early onset t1 patients. I went with this trial because I knew I would be getting the drug and there is a track record of safety (AAT) since the 80's with no adverse side affects. After deciding on this trial we learned that it was delayed at the Barbara Davis center possible beyond the 90 day from dx deadline so we had to find another center. Unfortunately at the time they were all east coast with all being north in blizzard prone areas (bad for flying) except Emory at Atlanta. Before beginning of second semester of school I flew to Atlanta to go to Emory University to get screened. With my luck this was also the day of the blizzard so the hospital was not even open. Practically snowed in we managed to get a meeting with the lead dr. of the trail who was able to find one assisting trial physician to come in the next day. So basically I ended up screening for the trial in the deserted Emory hospital. After getting screened it was days till we could leave and get back home. I finally learned I was accepted and was to start treatment on 1-31-11, the day before my 20th b-day. I also leaned I would need to be there weekly for infusions for 6 weeks each in two dosing periods and in the begging and end of each of the 2 dosing periods there for and entire week. Needless to say I ended up dropping all my classes at school and enrolling in online classes (not my idea of a good thing). I began the trial and got my first infusion on 1-31-11. at which time I also found out I was the very first patient to start this trial, I guess pretty cool but rather be first in other things but ill take it. Then spent the next week including my birthday in the strange city of Atlanta in a hotel room making the mundane daily pilgrimage to give blood at Emory. I received another dosing on the tail end of that trip. Flew back the next Sunday, got infused again Monday, came home and tomorrow I fly back again to be treated Monday for my 4th infusion. And this cycle repeats until the sixth dose then I stay for a week to give blood daily. Get a 3-week break and start the whole cycle over again. For a grand total of roughly 40 days ill be in Atlanta for this trial during the dosing then of course the after visits I haven't event wanted to glance at yet. The real kicker to this is the bulk of the days are in the week long blood study periods where I literally spend less than 5 min in the hospital to give a vial of blood which Emory sends off to the main trial lab in a different state. This fact is very frustrating because it makes the trial so much more demanding for as far as I can see it a senseless reason. Overall it just seams like I should be able to give the blood at the Barbara Davis center especially because they should be starting the trial sometime in the near future just not in that first 90-day window I needed.
So that’s where my life is now, about six months ago I pretty much was just in constant party mode. One of the downsides of going to the fine institute of the University of Colorado is its pretty easy to have a really good time partying. This naturally involves a good amount of drinking. The social scene I found myself in is consequently mainly people that go out and party and drink on the weekends and take care of school the rest of the week. While this worked out great then, not so much now. I find myself sitting home alone on the weekends now working as late as I can at my shop because it’s not fun to be that sober person in a room full of drunks. People look a little different from the other side. My life is completely a--backwards of what it used to be not 3 months ago. I feel like im still getting used to the whole thing but at the same time I don’t even feel this is real yet. The words - diabetes and me - don't connect in my head, it all almost seams like ill just wake up from this really long bad dream.