Oct 2, 2021

My (Failed) Kidney Donation Journey

 This past winter a post popped up on my friend Sam Ulett's Facebook page.  He had posted a video announcing to the world that he had a degenerative kidney disease and that he was in desperate need of a kidney transplant. He was putting out an appeal for any one who would consider giving him the greatest gift of all--the gift of life.

As soon as I saw Sam's post I knew I had to do something. 

I've known Pastor Ulett, as I call him, for a number of years now.  We first met when he came to Columbus as the associate pastor at the Ephesus Seventh-day Adventist Church.  We got to be good friends as he became my colleague for a few months, when he took on the long-term substitute teacher position for our 6th-8th Bible and Science classes at Columbus Adventist Academy.  At that time he was also running things at Ephesus as our senior pastor was severely ill for several months.  He took on this tremendous weight of responsibility with his characteristic good cheer and affable spirit, all while privately battling a serious medical condition that was growing worse.  We also grew close through our sons.  His two boys were good friends with my younger son, and Pastor Ulett's older son is in the same grade as Ezra.  

Me and Pastor Sam Ulett

I've always liked Pastor Ulett, and indeed he's appeared in this blog as one of my heroes and inspirations for a pair of sermons he preached that changed my life. In recent years he's stepped away from full time pastoral ministry for the time being but he'll always be Pastor Ulett to me, and he'll always be my friend.

So when Pastor Ulett put out the call, I felt I had to answer. People who knew about my journey to become Pastor Ulett's kidney donor would tell me what a brave, generous, and noble thing I was doing. But I didn't feel brave, generous, or noble. I just felt I couldn't turn away. My friend was in need and at least looking in to whether I could help just seemed like the only thing to do.  Just walking away, while offering thoughts and prayers for his healing did not feel like an option. Throughout this entire journey I have never felt like a hero. I've just felt like a friend.

I've decided to share my journey here because I want to encourage any one who reads this to consider taking the journey I've taken. If my story encourages someone to make the decision to become a living kidney donor and it results in a life saved, then my journey will not have been in vain.  Because, you see in the end, I was not eligible to donate.  Pastor Ulett still needs a kidney and maybe, just maybe you could be the one to save his life.

So what happened, you ask?  Here's the story:

We're a Match!



My first step was to find out if I was a blood type match. Sam Ulett is O positive. I didn't know my blood type and it turns out that is not just something listed on your medical history.  I consulted with my doctor and they told me there were a couple of options. If I had a blood draw at the doctor's office, I'd have to pay for it. I could also purchase an at-home blood type test kit.  But their recommendation was to just go donate blood.  It's free and they'll tell you your blood type as part of the process.  So that's exactly what I did. I was nice to know that I was helping those in need in the process.  It turned out I was a match and so I'd cleared the first hurdle.

Once I knew that I was a blood type match, I reached out to the Ohio State University Wexner Medical Center Comprehensive Transplant Center to begin the process of being vetted to be a living kidney donor.

Urine Trouble



My next step was to complete a 24 hour urine collection sample.  I was directed to go a LabCorp facility just a few minutes from home where the OSU transplant center had put in an order for me to get the the urine collection kit. 

 DONATION KEY: All costs associated with medical aspects of the donation, including all tests, exams, and the surgery itself are covered by the recipient's insurance. I never spent a penny in this entire process. (However, non-medical costs such as lodging if you have to travel out of town to donate--you have to be in the same hospital with the recipient--as well as time off work are not covered. Those are out of pocket expenses for the donor. However, because I live in the same city as Pastor Ulett and my employer was going to work with me on the 4 to 6 weeks of recovery I'd need after surgery I did not anticipate incurring any out of pocket costs. (I had been thinking to do the surgery right after Thanksgiving so I could use Christmas vacation as part of my recovery time).

The collection kit is just a big orange jug with instructions on how to collect and store the urine over a 24 hour period.  It was pretty straightforward.  I planned to do the collection when I was at home the whole time so I didn't have to lug a pitcher of pee to school with me (although later in the summer, my final urine collection sample had to be done on a specific day, so I did end up bringing my pee pitcher with me to the performance of the play I directed for Columbus Black Theater Festival).  

When I returned the urine collection to LabCorp, I sensed I might be in trouble.  There wasn't that much urine--only about 700 mL (the normal range is 800 to 2000 mL in a 24 hour period).  Sure enough I got a call from OSU a few days later letting me know that I had not passed a key marker in my urine test.  The bottom line is I didn't drink enough water.  I'd known that I wasn't drinking as much as I should. It was not unusual for me to go an entire day without drinking anything more than a single sip of water.  That is no exaggeration. I knew it wasn't healthy for me, but now if I didn't make a change I couldn't help my friend.

I asked the folks at the Transplant Center if I could increase my water intake and take another shot at the urine test.  They said I could, but stressed that I would have to develop a habit of consuming a minimum of 2 liters of water a day for the rest of my life, if I ended up donating.  They gave me two weeks to start developing a water drinking lifestyle, after which they'd test me again. If I passed, they'd test me a third time on my exam day to be sure I was still on track. 

And so I set out to form a new habit: drinking water. 

The Water of Life (A Parable)



Once I began drinking water I was shocked to realize that I've been thirsty my whole life and didn't even know it.  Once I began drinking 2 to 3 liters of water a day, I felt better, physically and emotionally--I had more energy and even felt like I looked better. My running times decreased dramatically--I was running some of my fastest times ever and yet I didn't feel like I was working any harder.  

One surprising effect of my increased water consumption was that I lost the taste for juice.  For years, I've been a bit of juice addict.  I constantly craved any kind of juice--those Bolthouse Farms smoothies, Calypso lemonades, Orange juice, Gatorade, fruit-flavored drinks of all kinds.  I felt like I needed juice to feel good, and yet I found that no matter how much juice I drank always wanted more. Once I started drinking water, my need for juice evaporated. I just didn't want it anymore. I came to realize that my craving for juice had actually been thirst for water. I simply didn't recognize my thirst for what it was. Once I got what I really needed, the unsatisfying juices no longer had the same appeal for me.

There's a lot of great spiritual lessons in my experience with water, for those that have ears to hear.

Family Worries



My family was pretty supportive for the most part, though certainly they were a little worried.  After all living organ donation is the most elective surgery there is.  There is no upside for the donor--no injury repaired, no disease cured, not even any cosmetic improvements, just the good feeling that you have helped someone else.  And there are the potential downsides that come with any major surgery.  And of course you're down one kidney for the rest of your life.  I, myself, wasn't worried about any of these possibilities, but my mother, in particular was very anxious about my going forward with this.  Every time I'd bring up my progress on the kidney donation, her face would cloud with worry and she would sigh deeply.  It's not that she didn't care for Pastor Ulett's situation. It's just I am her son, and its in a mother's heart to worry for her child. 

 And it's not uncommon that when people choose not to become a living donor, its because of family objections.  Even if the potential donor is willing to take the risk, sometimes their loved ones are not.  I hope that an anxious family member reading this blog might gain some peace of mind from what I learned on my journey, especially from my experience on my day at the lab.

What I Learned on Test Day



 On Monday, July 12, I had my lab day at OSU--a full day of tests and education, and the last step in my journey to becoming a living kidney donor for Pastor Ulett.  We dropped the boys off at the home of my colleague, Mrs. Kulemeka, and Barbara and I arrived at the hospital a little after 7:30 AM. The day began with an orientation and education session, and then was followed  by a battery of tests, a blood draw that filled something like twenty-five vials!  The day ended much earlier than I expected, around 1 PM instead of 4 or 5, and Babs and I went out for lunch before picking up the boys.

 I cannot say enough good things about my experience with Living Donor program at OSU.  They were outstanding from start to finish.  I learned so much more about the kidney donation process that day and left even more encouraged than I had been.  Here are my key takeaways from the day:

1. No Conflict of Interest. This really surprised me. I had always thought the donation and transplant team were the same people.  And I kind of expected there'd be this pressure to push through with the donation because someone really needed my kidney. But the donor team is entirely separate from the recipient team.  I'm not even sure the donor people know who the recipient is. So they are in no way haunted by the image of some needy kidney patient and driven to save them, even at a cost to the donor. Instead they reminded me over and over throughout the entire process that I was free to withdraw anytime I chose, right up to the day of donation. I did not need to have "a good reason."   I didn't have to have any reason at all.  If I decided I didn't want to do it, they would stand by me in that decision and protect my privacy.  This kind of  "no-pressure" environment is wonderful when making a decision this momentous.

2. The Donor team is dedicated to my health first. The donor program has one goal--to protect the health and safety of the donor.  That is their entire focus.  To make it through to being an actual donor your health must be impeccable.  They want to ensure that you will not be compromised by the surgical procedure or living the rest of your life on one kidney.  In fact, they will not allow you to waive your rights and donate anyway if they determine a donation would put you at risk (this is a fairly common scenario, as many times a donor is desperate to save the life of someone they love--even if it means risking their own life. OSU won't let you do that).

3. You go to the top of the list in the unlikely event that you should need a kidney one day.  This is was reassuring news as well.   While no one can guarantee a kidney to anyone, a donor is always considered a high priority recipient if they should ever need a kidney in the future.

I passed all my tests that day with flying colors. It looked like I was on the path to becoming Pastor Ulett's kidney donor. All that remained was for a few more results to come back from the lab, and then a committee would meet to discuss my status, go over my test results, and make the final decision.  Then it was simply a matter of scheduling the surgery--which could be done any time in the next twelve months.  Longer than that, and I'd have to go through the process of becoming a donor all over again. 

DONOR KEY:  The donor always keeps the "better" kidney, if there is any difference in kidney function. If all other factors are equal they will take the kidney left kidney because it is easier to transplant to the recipient.

The Little Kidney That Couldn't



A day or two after my lab day, I got a call from Dana my donor advocate.  She said that one of the scans had shown  one kidney was much smaller than the other.  Because they wanted to leave me with the larger kidney, she said we'd have to do a paired donation, as my kidney would be too small for the recipient. Instead my kidney would go to a smaller patient--a small woman for example, and another donor would donate their kidney to Pastor Ulett instead.  Also, they wanted me to come back in and to do one more test that would take a closer look at the kidney to be sure that size difference didn't also indicate a function difference.

So a few days later I went back to OSU for a second test. I can't remember the name of it--some sort of a nuclear scan as I recall.  All I know is that it was easy and painless. I just had to lie there for 20 minutes and I fell asleep during the test!

I was in Alaska visiting my friends Chris and Carissa, when I got the call. The committee had met and determined I was not a good candidate for donation.  They weren't happy with the function numbers on the smaller kidney and obviously weren't going to take the larger one.  While I was perfectly fine in terms of my personal fitness, my little kidney wasn't meeting their stringent standards for donation.

And so my kidney donation journey came to an end.  Pastor Ulett is still waiting for a donor.

And that means that while my part in this journey ends here, the story itself is still "to be continued."  I hope my experience encourages you to consider being the person who brings this story to a happy ending.

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