#kumed

Originally posted on January 18, 2018

“We were born with the ability to change someone’s life, don’t ever waste it”

I once read that a good deed loses its value once you tell someone of the deed you did. I have been trying to live this way for the past several months…quietly being a good person. I find a great reward in helping people, I always have. The power of social media I have found is a peculiar thing. For the past six or seven years I have leveraged social media to raise money for worthy causes that I found to be important. It was rewarding and hard work. In 2017 I made the decision to close down my fundraising operations to give back some much needed time to myself and my family. Around the same time I also made the bold decision to delete my Facebook and Twitter accounts. I made this decision for the same reason as closing down Freshcassette; to have more time to myself and to my wonderful family, and to quietly live my life. I miss being in touch with my friends, and seeing photos of people’s families. What I don’t miss is the constant divisiveness on social issues that has inundated everyone’s news feeds. Whether you love or hate Facebook it has proven that it can equally divide us, as it can bring good and kindness to our lives. Just weeks prior to my unplugging from Facebook something wondrous was ignited from the platform that will soon change mine, and nine other lives forever.

At the beginning of October last year I came across a Facebook post my wife, Jamie, had shared from one of her co-workers. The post immediately caught my attention. It contained a photo of a young family consisting of a father, mother, and two young children. The text of the post was written by the wife/mother informing her social network that her husband is on dialysis and is in need of his second kidney transplant. She eloquently described her husband’s situation, what it would mean to be a potential donor, how to get tested to be matched, and if people would kindly share her post. I didn’t know this family. I only knew my wife worked with this man’s wife. I also knew that he had two young children, just like I do. I knew I had to get tested. Why wouldn’t I? He needs a kidney, and I could potentially give one to him. No brainer, right?

After I discussed this with Jamie, I gave the University of Kansas Transplant Center a call. After a 20 minute phone call, I successfully passed the initial phone screen. They inform me that they are going to send me a blood pressure machine and that I need to take my blood pressure two times a day for five days, and then send them my results. I receive the machine the day before I am going out of town for four days to Nashville for work. I take my blood pressure every morning and every evening in my hotel, then on the final day from home. A few days later KU calls to tell me my blood pressure is good, and asks if I can come in to give some blood to determine my blood type and to see if I am a match for the intended recipient.

Another week later I get the phone call I have been waiting on. This phone call will tell me if I am a match to donate my kidney to my new acquaintance. 

“Hi Jon, we got your blood test results back and we were able to confirm your blood type is O+, but unfortunately you are not a match for your intended recipient.”   

Okay, I knew this was likely, but I was still a little disappointed. Through this process I have learned it is very difficult to find two people who match. They look at more than just blood type; they make sure that the two people’s blood will play nice with each other. Apparently ours were two armies of jousting blood cells who would fight ferociously to protect their turf.

Now what? Through all of the testing I knew I wanted to donate a kidney. I really couldn’t believe I hadn’t thought of it earlier. It took me reading a Facebook post to open my eyes. People, lots of people, are hooked up to dialysis machines for hours every week. People are dying everyday waiting on a transplant list. Healthy people have two functioning kidneys, and we only really need one. I have a spare! To me the decision was easy, why would I not donate something I have two of to someone who could die if they don’t have one?

So I tell the nice woman from KU on the phone that I want to donate anyway…to someone that will match me. The next step in the process is to have a daylong appointment at KU Med in Kansas City, KS. We get the appointment scheduled for a couple weeks out. At this point it is mid-November. I started this at the beginning of October. At this marathon appointment I have mini-appointments with:

Living Donor Nurse Coordinator

The lab for lots of blood and urine

Nephrologist (kidney doctor)

Surgeon (the guy who will actually cut me open)

Pharmacist

Dietician

Financial Coordinator

Social Worker

Another social worker

Psychiatrist

Chest x-ray

Pelvic MRI

This all took about ten and half hours in one day. But it was done. A little over a week later I get another phone call from the Nurse Coordinator to inform me that all of the tests they ran on me confirmed I am healthy with no hidden ailments, and I am approved to be a living kidney donor.  

Towards the beginning of December I learned two things.

1) My original intended recipient (from the Facebook post) has a matched donor and is scheduled for surgery right after the New Year. This made me so happy. I would have been somewhat bummed if I gave my kidney away and he still didn’t have one. (Note: surgery was successful for both donor and recipient)

2) The smart folks at the University of Kansas Transplant Center did some crazy algorithmic wizardry and found a way to turn my donation into a ten person kidney transplant chain. Kidney chains are hard to explain in words. This linked article does a good job of it, and there is also the picture below. I would be the donor in the top/left…the one with my name on my shirt ;) Essentially there are five donors and five recipients, all of which will have their surgeries at KU on either January 29th or the 30th.

So this is where I am at right now. For the past month I have patiently been waiting…quietly. Through this whole process I have remained very private about it. I have only really told close family and a handful of people at work. My intent wasn’t to keep this a secret. I just felt strange telling people. I didn’t want to come across as a boastful grand-stander. My very first sentence of this writing expresses the idea of goodness losing its value once it is talked about. This has been what has kept me quiet up to this point. As the days are getting closer and closer to my surgery date, I feel a pressing need to explain to my family and friends why I will be laid up for four to six weeks in recovery. I also feel a responsibility to bring awareness to the need for living kidney donors, or just organ donation in general. Until a few months ago, I never really gave living donation a thought. Not because I didn’t want to, but because it was never brought to my attention. The need for kidney donors is high, but the supply is low. If more people were educated on the process, I truly think more people would be willing to help.

I have been questioned why I would want to give my kidney to a stranger. The only thing that separates a stranger from someone you know is an introduction. Strangers have family and friends that love them, but for one reason or another they don’t have a donor who can donate to them. I am also not of the opinion that someone’s life is less valuable than mine or anyone else’s. We are all universally interconnected, and we need to demonstrate compassion and empathy for each other…regardless of who that person may or may not be. We hear a lot about equality these days. This is equality in its rawest form. There are many “what if” scenarios when contemplating living donation. What if I need my kidney later in life? What if a family member needs a kidney? These are legit concerns, but they are also unknown questions. What I know right now is that on January 29th a patient approved by KU’s transplant team needs a kidney, and I am willing to give her/him one. I am unable to see into the future, so I choose to live in the present.