I chose to give a gift of renewed life and health in a grand gesture of a selfless act.
Well, I don’t consider it completely selfless.
How and why did I become a living kidney donor? What were my motivations then and my circumstances now? What was the process like? While in my mind and heart there are easy explanations to these questions, I find it difficult to convey them to others in any real sense. But I do try. On the outside looking in, it might seem a completely, utterly, crazy thing to do. But I know a secret; we are all at least a little bit nuts in one way or another. Why not use it for good?
I gave my right kidney on June 20, 2019, via small open surgery. It was donated to a high school friend’s mother, Linda. She was having kidney failure and doing peritoneal dialysis for a few months before the surgery.
I had only met her a few times before I began testing. So she was practically a stranger. Her son was starting to campaign for her plight approximately a year before. They were using social media, bumper stickers, and a GoFundMe page to get the word out. Little did anyone of us know at the time that her new kidney resided only about seven miles away. I heard her story when visiting some mutual friends and talked to her son about it. I was pretty interested at the go.
At this point in my life, I was really looking for something incredibly special to do but didn’t know exactly what. (Note: I’m a giver by nature and was raised to help others when possible.) You could call it fate or coincidence or whatever. This basically fell into my lap. Truth. I was eating super healthy with consistent exercise for years but was a cigarette smoker and completely unaware of my true health status. I had not seen a doctor in years and had no health insurance at the time. So I started to research the process and what would be involved. I watched some kidney donation surgery videos right off the bat. Once finding out that testing would be essentially free for me, I started the process.
Linda was on the kidney waiting list at a few places. One of them was the University of Pennsylvania in Philadelphia. That’s where I decided to go. Very reputable and high on the best list. I was excited. I knew I would at least get a good idea of how healthy I was in the process and possibly get to donate a kidney. The first step required my blood type, for which we are compatible. My main testing was split into two days that were about a month apart. There were also several visits to Quest Diagnostics. A week before the testing began, I quit smoking. I was committed.
The first round of testing was blood work, education, chest x-ray, EKG, talking to various professionals like a social worker and an independent advocate. I was required to have a primary care doctor, health insurance, family medical history, and a plan of action for my recovery. None of which I had at the time.
The second round was almost five weeks later. It consisted of a CT scan, more blood work, and talking to a psychiatrist. By this time I had insurance, a doc, a basic plan, and had been cigarette free since the first appointment. I was still figuring out how I would monetarily survive to be out of work for up to three months. At this visit, I got all the results from the first. All tests and x-rays were awesome. It was seeming, so far, that I was pretty healthy and still in play to be a donor. I was overjoyed when I saw that my lungs were in good shape. I smoked cigarettes for twenty-five years.
In the meeting with the psychiatrist, I was being very honest and candid in answering his questions. We only talked for an hour. In this meeting, we talked about my life, why I wanted to donate, etc. I told him I was a heavy marijuana user and was willing to quit for the duration of the donation process. He wanted me to stop using for a couple of months, acquire a therapist, and return so he could reassess me. I agreed. This would give me time to fundraise and get the word out that I would be donating a kidney, even though I wasn’t accepted or done with the process yet. I was basically waiting on approval from the psychiatrist and the outcome of the CT scan. (Note: I really liked the feeling when they inject you with the dye.)
Two weeks went by until I got to see my CT scan results. My left kidney had a few small cysts and the right had a two millimeter unobstructed stone in it. We would go on later to call that one Benny and the Jet. My kidney anatomy was good. Everything was great. It was at this point I thought that I would’ve been accepted as a donor. They were telling me I was super healthy and they were suitable for donation but I still wasn’t accepted. I called several times over the next month and no one would return my calls. It was a little disheartening.
In the meantime I set up a GoFundMe page; my friends had a big “Bennyfit” spaghetti dinner and raffle, and we sold candles and chocolate to raise money for my time off. It was all really successful. We raised well over ten thousand dollars.
I was in contact with Linda for the whole testing process and let her know what was going on step by step. So when they weren’t calling back we both became anxious and confused. So we waited.
Fast forward to my reassessment with the psychiatrist about two months later. This ended up being quite a negative experience for me. In this meeting there was a student of his, which I thought was there just to observe, that was very aggressive in asking very personal questions. They were playing good cop, bad cop. I guess to put stress on me? Then they did their very best to convince me that I didn’t want to donate. But I never backed down. It was bullshit how I was treated. At the end of the meeting, the doctor told me that the team not calling me back was done on purpose.
After this meeting, I came in contact with Glenna Frey from Kidney Donor Conversations. Her just listening to me gave me a better perspective of what I was experiencing. She sent me some reading materials and directed me to some online donor support groups which proved to be invaluable. Being a member allowed me to talk to donors and potential donors alike from around the world. I was told to be patient, and I was. I eventually called the independent advocate and was accepted as a living kidney donor that very day! It was an indescribable feeling, so was the call to tell Linda.
I was ready to give one of the coolest gifts anyone could ever give. They decided to give her the kidney with the stone in it. This would require me to have a small open as opposed to laparoscopic surgery. Much longer recovery time was needed because I have a very physical job. I ended up taking off work for twelve weeks. Did I mention this was my very first surgery?
The day of surgery went well for both of us. Her new “Benny and the Jet” produced urine within hours. My hospital stay was for two nights. I was in a lot of pain after the epidural wore off but that was temporary. The pain was worth it and the journey was an incredible experience. The overall process took about ten months.
My recovery has had its ups and downs. I was walking five-plus miles within a week of being home. I adhered to all the restrictions, which was quite difficult. My creatinine levels started declining at the three-month point. I was running a few miles at about nine weeks and rode my bicycle forty miles at twelve weeks. Around that time, shortly before I went back to work, I started to have pain in my lower groin area. I worried about it so much that I started to have panic attacks and extreme anxiety. It turned out that I had two inguinal hernias that were unrelated to the surgery. I definitely had some mental issues after this incident. My team prescribed Klonopin to help anxiety. I never took medication like this before. I ended up having severe withdrawal symptoms after stopping. I went through terrible withdrawal for a good month. It was a month of complete hell. One of the worst times of my life.
By about six months after donating, Christmas 2019, I was feeling much better. My six-month tests were perfect, as well as my blood pressure; which I measure often.
Linda is doing good. We text every so often. She has been self quarantined since COVID but is healthy and enjoying her new kidney. I hope to celebrate with her in the future.
Our Kidneyversary is on June 20. I feel great! I’m still healing in ways and getting back to one hundred percent, running ten miles and bicycling fifty miles a week; eating good and water, water, water.
Giving my kidney to Linda was one of the best things I have ever done.
I was able to show my son and others what giving is about in a very profound way. It was a risk for me that I willingly took and invited. It definitely was not a walk in the park for me. I was inspired to continue on with a healthy lifestyle knowing that’s what ultimately allowed me to donate. I was literally able to share that health with another human being in great need. Linda is living a much better life than she was just a short year ago. Amazing!!! We are both very grateful.
One Beaner Benny (Ben Zuber, Guest Blogger)
P.S. Hi Glenna! As you can imagine I think Ben is an angel! He has a special presence about him. He gave me a great kidney we call Benny and the Jet (it came with a small kidney stone, hence Jet) I have had a smooth postop without any complications. I have had several golden retrievers, unfortunately, I lost my Buddy in March. I am going to adopt another. Looking at several labs and hopefully will have another buddy soon.
Thank you for helping Ben through the whole process.
P.S.S. [Glenna shared Ben’s story with Linda before publishing and she sent this email reply] Wow, that made me cry, I’m just so lucky that Ben donated to me. I wish there were words to describe how thankful I am, but nothing seems to convey how very grateful I am. I have had multiple wow moments, like the other day I was eating a piece of pizza, something very normal for most but not for someone with end-stage kidney disease, tomato sauce is off-limits due to the high potassium. And then there are times I wake up and think I have to get moving, I have to do my PD treatment, I was doing four treatments a day until transplant. My first year has been great, now able to do the things I enjoy, which is anything that’s outdoors, hiking and soon to be able to kayak again. I OWE MY LIFE TO BEN!
If you would like information about Living Kidney Donation, contact us at info@MyKDC.org