The A-Team… “A” stands for Anonymous (or Altruistic as we are technically referred to in the transplant community) and there is definitely a “Team” in this whole process, so therefore; I am part of the A-Team! For me, it was February 2016 when I started researching being a living donor. Why? The question has echoed my ears for the past year whenever people heard I was interested in doing it. My why sparked inside me over 16 years ago. A little girl in, what I like to refer to as, my “extended family” was diagnosed with a form of leukemia. Shocked was my first reaction when I heard the news. What can we do? passed through so many of our minds that wanted to help. When I was asked to be tested as a possible bone marrow donor I finally had a sense of worth, and possible hope in helping. I got a quick blood draw, and sent it away to the labs. At that moment, I wanted to be the match. I really, really, wanted more than anything, to be a match for her. It didn’t matter if the odds were against all of us trying, I know we all wanted dearly to be her bone marrow donor. I wasn’t a match, and figured I would ask to be put on the national donor list and maybe I could, at least, be available for anyone else in need. Ever since, in the back of my mind, I still wanted to be called as a potential match for someone. It hadn’t happened which is what brought me to last February 2016.
It started out as google searches leading to misinformation, or unanswered calls/messages before I found American Transplant Foundation. They were the pot of gold, and directed me to the hospitals in Denver that had Transplant Departments. I was gaining traction now as I had the right people to contact. Within 1 day I heard back from the Transplant Coordinator at University of Colorado Hospital (UCH) so I vowed to start my testing there. Porter Hospital called just one day after UCH and I became aware that after a few dead-end leads, living donors might just be in high demand. I was indifferent on which way I could be a living donor. After discussions about liver or kidney, I was led on the path of kidney donation. The recovery was a bit easier, success rate better, and I was slowly learning how many people are in demand of a kidney transplant. I had been totally unaware of the amount of people living in need in this country, and the world. (For stats, visit https://www.unos.org/donation/living-donation/) I was interested when I started looking into the process and it soon took a passionate turn to being hooked! There was no question; I wanted to be a kidney donor.
Upon confirming my intent, testing started. From April to June was a series of tests, appointments with doctors/surgeons/professionals. As I passed each one, I’d move onward in the process. June 9th was my big day where I met with the transplant team, and they performed a CT Scan of my abdomen to “size” everything up. I felt great, and most certain that the next call I was going to get from Angela, my transplant coordinator, would be telling me that I was approved. Instead, it was a call to tell me that I had a mass that was on my adrenal gland. They were not overly concerned, and I still needed to get it checked out further with my doctors/insurance. (Medical procedures, if anything abnormal is found, becomes my responsibility. This is VERY clear and mentioned from the initial stages.)
I first thought I was being removed as a potential donor. I was pleasantly surprised that this was not my “end-all” but the mass had to be cleared by my doctors with more tests to rule out any issues. Once my results showed normal, and after a 6 month “hold” I would have another CT Scan. If there was no growth then I could pick up again in the donor process. I gained ever more respect for the UCH Transplant Team as it became clear that they will not sign up a potential donor unless they are as confident as science/medicine can be that I was fit to be a donor. They are not playing a game of risk here, they have everyone’s best interest in mind. After my testing all proved negative, I was back in the donor process. (This was my choice to continue with testing out of pocket. There was not an ounce of pressure. It was my choice as I had a budget for the amount of money I would spend out of pocket, and everything fell within that budget. There was always the option to just drop out of the process, and accept that I couldn’t be a donor too. I wouldn’t have it though. If I was fine; I was going to do everything I could to reach my goal.)
My “file” would be complete in the beginning of this year. Then, with all the reports/tests/scans/and opinions, a panel of professionals met to choose my fate on being a donor. That decision day was March 10, 2017. I got the long-anticipated phone call that I had been approved by the panel, and had 2nd and 3rd approvals from surgeons. I would be activated in the paired kidney exchange program!!!
I am not sure I have felt this amount of joy in my life, EVER. I was surprised at how much my desire grew throughout the year. I wanted this, and now, I was going to get to do this. I am going to be an anonymous/altruistic kidney donor. To say I am excited is an understatement. I can only imagine surgery day being better than when I answered that call. I share all this because over the year, my research, questions, and awareness grew. I discovered many different ways to be a living donor for someone; bone marrow, kidney, liver (segment used). Rarely, segments of lung, intestine or pancreas can be used from a living donor. These are all interesting, and I never want to leave out the easiest, simplest way to be a living donor… by donating blood!! Donating blood is so important, and is always in demand. I have learned so much about this amazing process, and how incredible transplants are.
In February, I came across someone who has a friend that has been waiting for a kidney for years now. I am sharing his story to help raise awareness, and try to help him find a donor. His facebook page is Help Marc Kennedy Find a Kidney Donor. Check it out/share it! (https://www.facebook.com/groups/809792425726380/).
If you are at all interested in finding out more, please don’t hesitate to check out the links below on being a living donor. The American Transplant Foundation is great. They paired me with a donor mentor. I could ask this person anything related to their experience through their donor process. United Network for Organ Sharing (unos.org) is an amazing resource of information too. I would be more than happy to share any information that I have accumulated over the past year as well. I never thought I would anticipate surgery, and here I sit, on cloud 9, so incredibly excited for my day in the operating room.