17 year transplantiversary

my heart is thumping tonight with bold and potent excitement for things to come. in the same peaks and valleys, the softer, more subdued beats are quietly celebrating everything that has already come to pass.


and that?


that feels good.


17 years ago today, i was given a second chance at life through the wonders of kidney transplantation. my momma, the saint that she is, gave me life for a second time. while cystinosis is a complex and multi-layered disease that involves so much more than the kidneys, this event is one of those days i will never forget. by no means does a transplant "fix" cystinosis, (and this is something i have lived, practically my whole life trying to explain to some people who don't quite grasp this fact), but it has allowed me to move forward through my life in terms of being able to avoid dialysis completely thus far.


i remember so vividly being that eleven year old in that pre op room, making peace with the fact my life might be ending then, during that surgery. and i remember thinking, well...if this is it, then i've lived a good life. who does that? what eleven year old has thoughts like that? 


apparently i do.


i've had several emails asking about how and where to donate to help cystinosis. i think a lot of the time i tend to sugarcoat the realities of this disease on this blog. i do not want to be a doom and gloom place, but there are some harsh realities i'm coming to terms with these last several weeks. i'm finding that balance and i'm loving all of you who have chose to follow me on this journey. my heart feels like it might burst from all of this support. there is a link right HERE to donate to the cystinosis research network if you feel so inspired. i thank you from the bottom of my heart. we are truly such a small group of people that it is difficult for me to convey. CRN is a passion of mine, i serve on the board of directors and am honored to be a part of changing lives, cultivating hope, and celebrating the now, all at the same time.

being silly today in the photo booth at the aquarium

tonight, as i think about the real battles i am up against, i simultaneously celebrate the wars i have already won. 17 years is so much more than i could have ever dreamed of with this kidney. ♥

Transplantiversary!

Monday was 16 years since my kidney transplant. So mind boggling to type and think about that. The funny thing is, I was 11 at the time but felt much older. Looking back now I remember feeling much too old for a mere eleven. My fears and the weight on my back did not match my years. My peers were worried about fitting in at a new junior high, I was petrified I would never wake up or that I actually would wake up during surgery...somehow it didn't make sense and wasn't fair.

But, life isn't fair. I know that. And I had no idea the process would be the start of a new chapter in my life that included in it a daughter.

Although I was "lucky" and I use that term loosely, ha! However, we knew from the time I was about 16 months that one day I would need a transplant. I was blessed enough to be able to avoid dialysis because my mother would be donating her kidney to me and we were able to plan it all out. As much as you can plan an organ transplant in between 5th and 6th grades, right before Halloween.

{This photo was taken in September of 2008}

Did you know that in 2008, there were 16,520 kidney transplants performed and yet sadly there were still 82,364 still waiting on the transplant list. (This information was taken from the National Kidney Foundation's Website HERE. These numbers are unacceptable and break my heart. Honestly, I don't know where my next kidney will come from. It is a scary thought, so I try not to dwell on it. I know such sweet and inspirational women who are on the kidney transplant list this very moment. I wish more people would be willing to donate a kidney. Yes, it is a very difficult decision and it is not an easy surgery...but you are giving life.

While Cystinosis is not a kidney disease, the kidneys tend to fail first. It affects every organ in the body, but the kidneys are usually first to go. So many thought that after my transplant, I would be healthy and cured, which was not the case at all. I had so many complications in the years to follow that I became incredibly frustrated with the whole situation. I felt as though I traded one set of issues and problems for a new group of different ones.

The ironic thing is, with all the complications I have had in the last several years, my kidney function is wonderful! I was able to stop taking all of my anti-rejection medications and that is a very rare thing. It can be done, but only in desperate situations. I wonder why it worked in my life and I have not had any episodes of rejection. It doesn't scientifically make sense. That was one of my many worries throughout the pregnancy; that I would rejection my kidney because of the stress on my body and the fact my growing uterus was so close to it. (Just a side note, if you don't know, they place the newly transplanted kidney in the front of the abdomen as opposed to the back. I still have my two native kidneys in my back, although they are not functioning at all.) Needless to say that didn't happen and I truly consider it another miracle in the whole pregnancy adventure.

I'm a lucky girl.