The healthy daughter in a family of illness. NULL

My name is MacKenzie, and I am from a town right outside of Boston. I am a student at Auburn University. I am the youngest daughter of three, and I am also the healthiest. Both of my sisters were born with the genetic disease Cystic Fibrosis (CF causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder that has no cure.) From the start my life revolved around hospitals... My first memory was when I was five years old, and I was sitting in the hospital room with Lindsey... my oldest sister. I had a hospital mask strapped to my face, and I was playing with one of the beanie babies someone had given my sister as a ‘get better’ gift. All these memories are rather spotty, but the astringent smell, and empty cold hallways are things that have stuck with me forever.
Lindsey had been incredibly ill ever since she was born. Always in and out of the hospital, and when she turned 15 she was told she had two weeks to live if she didn't receive new lungs. Soon after the doctors told my family that, Lindsey was in St. Louis undergoing a double lung transplant, and my parents were the ones donating. It was thankfully a grave success. Ashley was a little different when it came to her CF. While she obviously had health problems, she wasn't constantly ill when she was growing up like Lindsey was. Ashley was able to stay primarily out of the hospital until she reached the age of 15 (she is 3 years younger then Lindsey), and that is when she got very sick. She was told by the doctors that she to was in desperate need of a double lung transplant because her current lungs had almost completely failed her. And with those words, my family took no hesitations, and Ashley was in California getting a double lung transplant, and my two aunts were the donors. If you are wondering why St. Louis and California it is because my family did much research about which hospital had the best success rate after a transplant, and during those times they found it was St. Louis and California. After both of their double lung transplants- they both acquired diabetes, and unfortunately both ended up needing new kidneys. Ashley received her kidney transplant first because her kidney failed first, and was given a kidney by my aunt... and soon after Lindsey's kidney failed and she was given a kidney by another aunt (THANK GOODNESS for my large family... without them none of this would have been possible.)
After both of their kidney transplants... things, health wise, had settled at the Dias residence... which was unheard of haha! Unfortunately, that sense of calmness didn't last.
Last summer Ashley started getting very sick. It was found that her new lungs were now rejecting and she was going to need a redo double lung transplant. At this time they don't do many living related transplants anymore, especially for REDOs (living related is when a live relative donates two lobes), so she would have to be put on the list at a hospital for lungs from someone who was deceased and matched her antibodies. The difficulty with Ashley was that she had three different antibodies in her body... one from my aunt that donated two lobes, another from the other aunt that donated two lobes, and one from my aunt who donated a kidney. This meant that it could be difficult to find a lung that would match with all those antibodies. It wasn't impossible though. She was put on oxygen, and then my family started researching where Ashley could get this REDO transplant. They found Cleveland Clinic in Ohio had a good success rate, and they did REDO transplants. They evaluated Ashley, and she was accepted into Cleveland Clinics hospital. While she was there she ended up crashing a few times- and got sicker, faster. She was eventually put on a trach (a machine that breathes for you) and put as first on the list for lungs. She waited months, and months, but lungs never came in. Ashley passed away on June 14th 2012 while she waited in the ICU for lungs. Why didn't lungs come in for the months we waited? Maybe it had something to do with the her situation with the different antibodies in her body, but I think it was was primarily because people aren't becoming organ donors. I watched my sister die, and I don't want anyone else to have to experience something terrible like this...and that is why I have come to the decision to push the severity of organ donation to the public.
Lindsey, in May of this year, while Ashley was in Cleveland, was told she needed a new kidney because her new one has since failed her. I have decided to donate to her. I can't let Lindsey wait on a list for a kidney and see what happened to Ashley, happen to her.
So that is where I am right now. I am Lindsey's kidney donor...they don't know when the transplant will be, because they want Lindsey to gain some weight and be more ready for this transplant, but it will be sometime within the next month. My life has been full of trials and tribulations, but everything has made me incredibly strong. I miss my best friend, Ashley, dearly, but I live my life everyday with the strength she taught me, and it is what helps get me through my toughest days.
My life is hectic, but I think my families story can save lives, and that is why I continue to be keep everyone in the loop with what is going on. I have a youtube channel (one of my videos was on NPR) and I post videos about things that are going on, but sometimes I don't have time to update that- so I thought when I can't update that, I can update this so you guys will know what is going on.
Here is my organ donation video for anyone who is interested: http://www.youtube.com/watch?v=dCEPnLtGG5k&feature=plcp
Here is Ashley's story on NPR: http://www.npr.org/blogs/money/2012/05/29/153914790/who-decides-whether-this-26-year-old-woman-gets-a-lung-transplant
http://www.npr.org/blogs/money/2012/06/15/155140438/ashley-dias-1985-2012

my website: http://breatheeasywithme.blogspot.com

Submitted by Anonymous


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