#kumc

Originally posted on February 2, 2018

Four months ago…just a week after my 41st birthday, my life-path made an immediate stop at a steep cliff. The kind of cliff that takes your breath away because of just how high it is. On the other side of the cliff was someone I didn’t recognize, but they clearly needed some help. Do I turn around, walk away, and let someone else help this stranger? Do I ask him if he has any family or friends that can help him on the other side of the cliff? Or do I evaluate the risks of getting over the gap and get to helping this person immediately? I know I have the athletic ability to jump this gap. I decide I must jump to the other side to help this person. There is honestly no reason I shouldn’t help. I backup to allow plenty of space to get up to speed, I begin my run, and with 8 inches to spare I launch myself in the sky. I hold my breadth while I feel my body rise and descend in the air. Suddenly my knees and hands take the impact on the hard loose gravel of the other side of the cliff. I lookup and the stranger offers his hand to help me up. No words were exchanged, but I could tell he was thankful for the risk I just took. I stood up, dusted my knees off and kindly asked the stranger what I could do to help him.

Last week I shared with you my plans of being an altruistic kidney donor. I had surgery on Monday to remove my left kidney. It was then cleaned up and put into someone who really needed a new kidney. The transplant team at the University of Kansas did this procedure four more times over two days. Five donors and five recipients in one hospital. I have been told history was made. It was the largest kidney chain in KU’s history, and maybe the state of Kansas and for Kansas City, too. It has been an exciting week, for sure. 

Jamie took me to the hospital Monday morning at 8:00. We were admitted and sent to the correct waiting area. I found my mom waiting there for us. After not waiting too long they invite me back to the surgery prep area. I ditch my street clothes and put on the easy-access hospital gown and safety-grip socks the nurse gave me. Aside from answering a million questions I have already answered a million other times, the nurse was getting my IV put in, sticking EKG electrodes on me, and asking lots of other questions about my tattoos. (Side Note: most of my caregivers were fascinated by my tattoos and wanted to know all about them.) The anesthesiologists came in to talk about the general anesthesia they will use to put me under prior and during the surgery, and also to administer nerve blocks prior to surgery.  Nerve blocks are localized numbing shots they shoot in my abdomen to try to ease the pain of the incisions. They had Jamie and my mom come say their goodbyes, and I was being wheeled back to surgery.

As I am rolled into the operating room I remember two things specifically. One, the room was incredibly bright. I suppose the surgeons will need to be able to see everything in good detail. And two, there was a guy in scrubs with an expensive video camera. I suddenly remembered that I agreed to be filmed and interviewed before, during, and after surgery. I hope he was on my good side, because seeing the cameraman was the last thing I remember before everything went dark.

My memories in the recovery room are kind of foggy, so I cannot guarantee any of it as factual. Jamie has reminded me of this specific conversation taking place in the recovery room.

Jamie: How are you feeling?

Jon: I don’t know

Jamie: I have some good news

Jon: You’re pregnant?

Jamie: No, that’s impossible

Jon: Oh, okay

Jamie: I’ll remind you of this conversation when you are more alert

I remember hearing my mom’s voice, but I couldn’t see her which confused me. I think she was sitting down behind someone. I was very thirsty and had a dry mouth. They gave me a tiny sponge on a stick dipped in water. It was the least rewarding thing to ever touch my lips. If you’ve never sucked water from a sponge, it does not get my thirst-quenching recommendation. I was in quite a bit of pain while in the recovery room. The nurse had to remind me numerous times that I have a push-button pain relief hooked-up to my IV. I could push the button whenever it was lit up with a green light, which was about every ten minutes. I was the only one who could push the green button. The doctors, nurses, and my family members could only remind me to push it. As cool as this button was, they removed it from me the next morning.

Finally, the people taking care of me in the recovery room thought I could go up to my room. They called someone to push my bed up to the sixth floor. If there was a non-perfect experience found in my journey at KU, my transportation from the recovery room to my permanent room would be it. The guy in charge of pushing my bed looked a little like Martin Short’s rendition of Jack Frost in Santa Clause 3 (Side note: my kids and I love this movie.) Mr. Frost was not very friendly. Maybe he was just having a bad day. He ran the bed into a couple of walls and elevator doors, which isn’t enjoyable when you have four new abdomen incisions and a freshly harvested internal organ. When we get to my new home on the sixth floor there are 8-10 nurses awaiting my arrival. Frost disapprovingly tells me, “You must be somebody important, I’ve never seen anyone get this many people to move them from one bed to another.” The great nurses and Frost get me moved to my new bed and start getting me hooked up to all my stuff. Time for rest and recovery.

In an effort to not put my readers to sleep I am going to condense the content of my hospital stay, and highlight the most important parts. I think the best way of doing this is by thanking the people who took care of me, or had a part in my living donor journey.

Family & Friends - Jamie (my lovely wife) has supported this journey from the start. She had some concerns, but I think educating herself about the concerns helped her ease them. She was my main support while in the hospital. She handled a juggling act of being there for me, but also coordinating a ten and a four year old’s schedule, plus she’s on an active job hunt and the president of the PTA. She certainly has her hands full. Thanks to modern technology she was able to do a lot of it while I was napping in a bed. Thank you, Jamie. My kids have been great. They understand that their dad has to take it easy for a few weeks. They have been so sweet to me. As they continue to get older in life I’ll be able to talk to them about this experience so they can develop an appreciation of what I did and why I did it. My mom and mother-in-law have helped with watching our kids and transporting them when Jamie couldn’t. Plus, that means the kids get extra time with the grandmas, which always means more sugar!

Once I went public about my decision to donate a kidney via my last blog post, the support has been outstanding.  I have received countless messages from people supporting me and my family. Every single message has been special to me. I thank you all for uplifting me at this critical moment in my life. Thank you for the cards, flowers, gifts, and the wonderful meals that people have volunteered to bring my family. I also want to give a special shout-out to my Benninghoven family. They have supported me and my family in countless ways. Thank you for everything!

Tony and Christyn Zins - If you read my last post, you learned this all started from my reading of a Facebook post from one of Jamie’s co-workers. That co-worker is Christyn Zins. Christyn’s husband, Tony, was my initial intended recipient. He is the reason I originally went to get tested. Tony and I weren’t a match, and he went on to have surgery on January 2nd of this year with a perfect match donor from his longtime friend, Craig. Christyn has been a wonderful support system to Jamie. She’s answered questions, provided a care package while we were in the hospital, and visited us twice while we were there. Christyn also gave me a beautiful blanket that she quilted this past month with help from Tony, her mother-in-law, and her two sisters-in-law. It was extremely kind and generous. Even though I didn’t donate to Tony and he wasn’t involved in the kidney chain, I still feel that special connection to him and Christyn. I don’t know my recipient, and there’s a chance I might never know them. Tony is the closest thing I have. He gives me a face to visually use when I think of who has my kidney. I am grateful to Tony and Christyn, and also to their families. I have heard that their families ask about me, so it’s comforting to know they’re thinking of me.

KU Medical Professionals - From the first moment I called KU inquiring about living donation I have been treated with kindness and respect. My primary point person through this whole process has been Melissa Fowler, the living donor nurse coordinator. Melissa loves kidneys, and she makes everyone who talks to her love kidneys too. She has a real passion about her job, which makes her a valuable asset to the transplant center. During the months that it took to coordinate this chain I emailed her dozens of times with random concerns or questions. Every time I received a polite and prompt answer from Melissa. She is hands down the very best at what she does.

Dr. Ilahe is the nephrologist (kidney doctor) and the head of the living donor program at KU. Dr. Ilahe has that same passion for kidneys that I found Melissa having. Every time I saw Dr. Ilahe she gave me a hug. She has always been so thankful for what I volunteered to do. I believe she was one of the key figures in putting this 10-person kidney chain together. So, I’d like to congratulate her on this accomplishment.

Dr. Kumer was the doctor who actually performed the surgery on me. Dr. Kumer is the in-house ace on removing kidneys. When I met with him weeks before surgery he told me that I am the only one in the hospital who is having a surgery that they don’t need. While this is true, for this week it was me and four others. Dr. Kumer carefully cut me open, detached my kidney, put his hand into my abdomen and personally removed my left kidney, and then sealed me back up. And then he did it to four other people.

There were a lot of other people I worked with on the transplant team. Samantha and Jaime were great to me. I didn’t have a chance to work extensively with either one, but the interaction I did have with them was pleasant. The lab technicians always had a fun attitude everytime I went to give blood. Honestly, there wasn’t a single person through this process that I had a bad experience with. This department has kind, professional, and always thankful.

Finally the nurses that took care of me post-surgery were awesome. The level of care I received on the sixth floor was nothing like I had seen before. I had the same day-shift nurse two consecutive days, and the same night-shift nurse two consecutive nights. Hannah and Alec. They brought nursing to a whole new level. They were young, fun, and knew their stuff. Nurse Hannah made a personal connection with Jamie and my kids. It’s comforting to have a trusting relationship with your caregivers when you are in such a vulnerable state. The professionals who took care of me while recovering on the sixth floor were outstanding.

I was released from the hospital on Thursday afternoon. I have spent most of my time in my bed since I got home. Jamie and the kids are all helping out, which has been nice. We have meals being made and delivered by several friends for the next two weeks. My sleep schedule is totally off. I go to bed around 9:00, but wake-up really early, and then have one to two naps during the day. I’ve always been a big water drinker. I’ve learned I need to keep that up, plus a little more now. I also cannot take NSAIDs (non-steroidal anti-inflammatory drugs) ever again. NSAIDs are commonly known as ibuprofen, aspirin, and naproxen. This is probably the biggest long-term adjustment I’ll need to make. Tylenol is my pain reliever of choice now…forever. I should be back to normal in a few weeks. My remaining kidney will adjust to do the work of two kidneys. I’ll need to continue living a healthy lifestyle and stay away from any high-risk diets that could cause diabetes or high-blood pressure. The last two years I have really focused on healthy living. If I continue doing what I’ve been doing, the doctors have no reason to believe I wouldn’t live a long normal healthy life.

I have my first follow-up appointment on Thursday morning with Dr. Kumer. I am off work for several weeks to allow myself plenty of time to heal. I plan to write, read, play guitar, enjoy time with my family, and just be thankful for life and make the best of living.

About two weeks prior to surgery I had to come into the transplant center for some final pre-op stuff to do. I was also interviewed by KU’s media team. They were beginning a project to try to interview as many people involved in the donation chain as they could, and kind of follow everyone through the process. Fast-forward to the Wednesday after surgery I am informed that KU is hosting a press conference and issuing a press release about the donation chain. A few hours later I am getting texts that people saw me on the six o’clock news. Oh, and I am getting links sent to me of articles on local news websites and YouTube. What?!? This was totally unexpected. I didn’t think anything was going to hit the media until the interviews were done after the surgeries. Links are below for your viewing pleasure.

YouTube - produced by KU’s media team

KU Press Conference

KU Press Release

KCTV5

Fox4

This isn’t the direction I saw my life going when I was celebrating my 41st birthday. I didn’t see that cliff approaching either, it came out of nowhere. I can’t say that I would have always chosen to jump to the other side to help the stranger. But times are changing, and I have changed. Life is not about me, it never has been. I found that life is about leveraging your talents, your resources, and your heart to make a positive impact on someone else, and being brave enough to do something about it. You don’t have to jump over a cliff or give a kidney. We can make positive impacts daily, heck we can mindfully always be making them. Forget the past and don’t worry about the future. Be in the moment, and demonstrate compassion for all. 

This is living.