My Story

Hello,

I'm Mckindree Patton, some call me "Kin" or "Kinny"! Let's start from the very beginning…

Growing up I was a competitive gymnast. I loved it, it was my passion. I had always had a dream of one day becoming a collegiate gymnast. Throughout all this time of doing gymnastics, I would always be sick. Getting infection on top of infection. It became harder and harder to do what I loved everyday, and we realized something was really wrong. I should not be getting this sick this often, so we went to my immunologist. After lots of testing, we discovered I had an Immune Deficiency called CVID (Common Variable Immune Deficiency). With this disease my body cannot fight off infections, meaning I catch the "common cold" very easily and my white blood cells don't produce those antibodies to fight those common infections. For this I receive an infusion called IVIG every three weeks to help those antibodies produce.

In July of 2010, the same doctor realized my red blood cell count was steadily declining. So, I was sent to a Hematologist/Oncologist at Phoenix Children's Hospital. Lots and LOTS of blood tests, bone marrow biopsies, genetic testing, and visits to expert doctors around the country happened. No one could figure out what was going on. They all said I was "abnormal" and a "mystery", they were all stumped…I can't even tell you how many times I heard and keep hearing those words. While being hospitalized in July of 2011 for a bad infection, results from Cincinnati Children's Hospital came in. We had been waiting for answers for a long time. The diagnosis was Diamond Blackfan Anemia (DBA). This is a very very rare form of bone marrow failure in which my body doesn't produce red blood cells. There are only about 700 people around the whole world with this rare diagnosis. I guess the doctors always knew I was special lol. For this I receive red blood cell transfusions every month to keep me going. With the transfusions comes a separate problem called iron overload. Since I have received so many blood transfusions, my iron levels are very elevated. I am hooked up to a medication called Desferal every night through my port. This medication gets rid of all the extra iron caused by the blood. But… I cannot thank blood donors enough from everywhere for their donations, for without it, I may not be here.  

Since 2010/2011, I have received countless IVIG infusions and roughly 80 units of blood. My family and I have recognized the importance and need of blood and bone marrow donors. We've been able to speak at events, host blood and marrow drives, and even developed an organization called "Kinny's Kause" (link on the side) to make people aware of not only DBA, but any other bone marrow failure and create awareness of the need for blood and marrow donors. 

Because I have a bone marrow failure, we always knew of the chance that I would one day need a bone marrow transplant. Two years ago, I met with my amazinggg transplant doctor, Dr. Douglas at PCH. We had talked about it, but kind of put it on the back burner. She needed more details about both of my diseases, so we have gone back and forth to the NIH in Maryland. Throughout these two years, we have found out I have over 100 matches on the marrow registry (which is a HUGEE blessing because none of my siblings are matches). Finally Dr. Douglas got some information…so here we are. Two long years later. We met again with Dr. Douglas on May 15 of this year and drum roll please…..we found out I will be undergoing a bone marrow transplant this July. A young, male donor  has been selected, I want to know who this person is so badly so I can go up to him and hug him to death.  I mean he is kinda saving my life and all HAHAHA! 

The transplant will be allogenic, meaning a non-related donor. The donor will undergo a "surgery" where over 600 extractions of marrow will be gathered. This type of transplant will hopefully reduce the risk of my body rejecting the cells and reduce the risk of GVHD. Before the transplant, I will undergo MANY tests, mri's, body scans, etc. to make sure my body is capable of handling this major process. I have started the egg retrieval process so that I have options in the future. Since I will be on chemo, there is a risk I could be infertile. The process in hard, but I'm so willing to do it if it means being able to have my own kids one day. After all this, before the actual transplant, I'll be admitted into PCH for 7 days and be given antibodies to kill off my t-cells. I'll then go home and be re-admitted for chemotherapy (yes, i'll lose ALL my hair… but I'm not too worried). The cells from the donor will then be infused into me, kinda like a blood transfusion, and then we wait. I'll be hospitalized roughly 10-12 weeks and in isolation. It all depends how my body responds to medications, feeding tubes, etc. We keep waiting until the cells engraft…it usually takes about 100 days. I'll be very seceptible to infection, so no fast food, Diet dp from circle k (sad face), or lots of people. TOTAL ISOLATION. After the cells engraft, I'll hopefully be able to go home…I won't be able to be around a lot of people or still not be able to go out for about a year, so still isolation when we get home. All of this is very scary, but the hope is I won't have to live off someone else's blood or live with chronic infections. That makes me happy. I could possibly be normal and live a normal life, happy and healthy. It will be the hardest experience of my life, but with the amazing support I have with family and friends, I can get through it. 

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My hope with this blog is to share my everyday experiences, not only going through transplant, but through my love of photography, fashion, and anything else. It's essentially to document my journey of my life. I hope you will enjoy this blog and I hope you can find a little inspiration through it. Welcome to "My Journey"…