30 September 2014

Be Bold, The World Is Waiting

Next month marks 20 years since my kidney transplant. Twenty years. Twenty years. I have a hard time believing it, even though I've lived every minute of it. An eerie aspect of it all is that when I look back on those days, and particularly the night before the big operation...I didn't feel a mere 11 years old at the time. I felt so much older. I remember being the most worried about my sister (who was 4 years old then) and my mom (who was the donor). I remember the final 19 vials of blood they lost, yup lost somewhere in the hospital, the night before everything was to take place. My sweet as candy transplant coordinator came into my room, sat on my bed and delivered the news. It came down to drawing more blood to re-run the last minute tissue typing, or rescheduling the surgery I had been anticipating my whole existence. My tween heart was devastated. My redheaded temper was furious. My core simply wanted another chance at life, without having to give up 38 vials of blood the night before. ;)

In the cystinosis community many of my friends have had kidney transplants. It is quite close to being the norm. I only know of a few of those kidneys which have lasted longer than 15 years. It happens, but it isn't expected or even the average. There are so many variables that affect the life of a transplanted kidney, many of which are unknown. Such a weird balance of what ifs and loops in the road to get to here, to today. I have a theory my pregnancy actually benefitted my kidney when all was said and done. And I was extra lucky because I was off all anti-rejection medication before I found out little Miss S was growing in there.

I'm planning some wonderful things for the week of October 18th as a way to celebrate. Perhaps a special tee, maybe an instagram loop giveaway with fabulous goodies, and possibly lots of random acts of kindness. Because I want everyone to have some fun sharing this milestone with me! Can't wait to share more details!


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