Wow.

If you haven’t forgotten about us, thank you — and I’m sorry.

Truthfully, we haven’t really had anything to share, which is a good problem to have.

Zoe’s annual cath & biopsy took place last April, and her results were 1R/0. In the world of biopsy results, these are near perfect and pretty much line up with past results, so no surprises — which is just how we like it. Dr. Boyle is retiring, and since Zoe is 23, we’re working on her transition to the adult team now as opposed to waiting until she’s 26. More to come on that.

In December, we celebrated Zoe’s 17th heartiversary. No fireworks. No big party. We were both at work.

This is what life 17 years post-transplant looks like for us. It looks so much like your average day-to-day that sometimes we forget. Just for a moment.

All it takes is a phone call to send me right back to that dark, quiet ICU.

A couple of weeks ago, I received a phone call from Sandra at Lifebanc asking if Zoe and I would be interested in doing an interview for National Donor Day — 2/14/26. She was going to send out some feelers to the local news stations to see if anyone was interested in running a story. We’ve done some things for Lifebanc in the past, and she read the blog and checked out Zoe’s photography site, so she thought we would be great for the story. Since we love to help with donation advocacy, we agreed, and I gave her permission to share my contact information.

Just over a week ago, Sandra called me again to let me know that Lindsey Buckingham from WKYC wanted to pick up the story and feature Zoe and me on her Heartstrings segment, set to air on February 13th.

Watch our Heartstrings interview here.

My dogs did NOT make the interview easy, so shoutout to Lindsey and Randy, the cameraman, for putting together something so wonderful.

Our interview and the story that accompanies it are such small pieces of Zoe’s story and the reality of our lives during that period. I’m eternally grateful for the opportunity to get lost in the day-to-day of life.

On a very related side note: my older sister, Zoe’s Aunt Nik, is currently being worked up at OSU for a heart transplant of her own. Nikki got this blog started and has been my partner in awareness and advocacy for the entirety of Zoe’s journey. She practically lived at the hospital with me, and now she’s on a journey of her own. With her boys living on the other side of the country in Alaska and her only local child pregnant with her first child, I find myself riding shotgun again for another heart transplant.

Just over seventeen years ago, we were hoping for a miracle.

Today, we’re living in one — in the ordinary Tuesdays, the biopsy reports that read 1R/0, the heartiversaries that pass quietly while we’re both at work.

And now, as we stand on the edge of another transplant journey — this time for Nikki — I’m reminded that none of this is guaranteed. Not the stability. Not the peace. Not the privilege of forgetting, even for a moment.

If you’re still here after all these years, thank you. Truly.

Please keep Nikki in your thoughts as she begins her evaluation at OSU. Send her all of the good juju for strength, for clarity, for timing, and for the family somewhere out there who may one day say yes.

We know firsthand what that yes can mean.

And as always — if sharing Zoe’s story, Nikki’s story, or registering as an organ donor reaches even one person — it’s worth it.

More to come.

I guess I’ll start by once again giving thanks and living in the gratitude that we have for Zoe’s donor. We wouldn’t be here without him and his family. We don’t know you, but we thank you and we all have love for you.

So how are we celebrating this 13th heartiversary?

We’re working. It’s not glamorous or even really fun, but it’s the truth. Zoe is working. Her brother is working. Her dad & stepmother are working. My wife & I are both working. I’m definitely not letting the day pass unnoticed though. In addition to my annual heartiversary post, I also left Zoe’s gift on the kitchen counter for her. Quite a few heartiversaries ago, I started getting Zoe ornaments every year to mark the occasion. I try to find one that is symbolic of the year. Someday, when Zoe has her own tree, in her own home, that tree will be filled with these special ornaments.

What have we been up to?

Life moves quickly as is evident by my lack of consistent updates. I stand firm that no news is good news so the less you hear from me, the better Zoe is. Again, all part of that goal.

COVID ruins everything has become my mantra and if that’s not entirely true, it certainly puts a damper on things. We spent 2020 pretty rigidly keeping Zoe safe. Once the vaccine became available we relaxed a little bit since it’s hard to keep a 19 year old, fresh out of high school in a bubble. Zoe spent her last year of high school on a laptop in her bedroom much to her intense dismay. She did graduate and was able to safely walk with her class.

She started college in the fall so she’s feeling pretty grown up right about now. Can we just take a minute and fully appreciate how cute this kid is?

In addition to being a high school graduate & college student, Zoe has also started herself a photography business. If you’re local and find yourself in need of a photographer….Zoesheart Photography is where you should start. I always said that she had a good eye and now she’s out there showing everyone else.

My wife, the world’s best hype-man, took Zoe for a weekend to bike through Detroit to shoot street art and you’ll find some of the awesome shots she got on her social media pages; Facebook & Instagram.

Yeah, but how’s her heart? Kidneys okay?

From a medical standpoint, Zoe’s doing well. The results from her annual biopsy were 1a/0 which is near perfect and in line with what they have been historically. Likewise, her kidneys are holding steady so that’s also good news. So you see? Pretty boring.

Thank you all for the support over the last 13 years. May we have many more boring years ahead of us.

Zoe has added nephrology to her list of specialists. She’s got a doctor for her heart, one for her lungs, one for her digestive system, one for those pesky swim/dance related injuries and NOW, one for her kidneys.

It’s well known amongst the transplant community that Tacrolimus, an anti-rejection medication, is murder for the kidneys. Long-term use of the drug (short term doesn’t exist btw) means eventual destruction of the kidneys. Unfortunately, the other anti-rejection drugs available don’t hold a candle to Tacro and thus…chronic kidney disease is par for the course in transplant patients.

At every biopsy, Zoe’s creatinine levels are checked with all the other labs that are run. Creatinine is a waste product. The amount of creatinine in the blood indicates how well the kidneys are functioning. The higher the level, the lower the kidney function. Zoe’s levels have been holding pretty steady at 1.0 for a couple of years. At her biopsy in July, her level was 1.0.

Last fall, Zoe was complaining about severe exhaustion so off to the pediatrician we went. I wanted her checked for a medical reason for the fatigue before I told her to get off her butt and go to the gym instead of napping until dinner every day after school. It’s really easy to get yourself caught in a viscous fatigue cycle; you have no energy so you sleep a lot, no activity leads to further fatigue, and on and on the cycle goes. Her pediatrician ordered labs and gave her a pretty thorough physical exam. Neither her lab results, nor the physical gave any reason for the fatigue so the doctor echoed my “Stop napping and go do something, like the gym” sentiment. She noticed that Zoe’s creatinine level had jumped to 1.3 since July. While this isn’t a reason for the fatigue, it’s not good so she sent a message to cardiology and copied nephrology. Nephrology contacted me and scheduled Zoe for January. Cardiology decreased her Tacro level slightly.

Last week we met with nephrology. It was an educating visit for both Zoe and myself. We learned that there are 5 stages to Chronic Kidney Disease which Zoe falls into because of her Tacro. Again, this was all expected. Stage 1 CKD is 80-90% kidney function. Stage 5 is 30% function or less. Kidney transplants don’t occur with the regularity of other organs thanks to dialysis. There are 2 types of dialysis; hemodialysis and fluid dialysis. Hemodialysis is when the blood is removed from the body, cleaned via machine and then returned. It’s done at a facility and generally is done 3 days a week. Fluid dialysis can be done at home. The patient is still hooked to a machine, but the fluid from the body is cleaned instead of the blood. It’s done overnight, while the patient sleeps so it’s much less disruptive to life. With a creatinine level of 1.0, Zoe would be considered stage 2 with approximately 70% kidney function. With a creatinine level of 1.3 (October value) she’s looking more like stage 3 with 50% function. Stable levels give greater indication of which stage she’s at since the creatinine levels can fluctuate with too high Tacro levels and dehydration.

Zoe got a(nother) lecture on how much she doesn’t drink.  My kid operates on a high level of dehydration on a daily basis. Despite my urging to drink drink drink, she doesn’t doesn’t doesn’t. What’s a mom to do? Apparently, threaten dialysis. Who knew? Tacro causes damage to the kidneys. Dehydration causes damage to the kidneys. Zoe not drinking is basically taking a bad situation and making it much worse. She’s been instructed to drink no less than 64 ounces of water every single day. No exceptions. No excuses.

Nephrology repeated her labs and I received a call the following day that they came down from 1.3, but at 1.1 it’s not the 1.0 (Zoe’s current normal) that all the doctors want it to be. I was reminded to push fluids since that’s the only part of this we can control.

The current plan is to repeat her labs in a month, and will they will be repeated when she sees nephrology every 3 months for the next year. Tacro levels will also be run and monitored to see if the dosage can be safely lowered at all to keep her levels where cardiology wants it while giving her kidneys a break.

The damage done to her kidneys is not reversible. They won’t get better. The goal now, is to keep them from getting too much worse too soon.

For the first few years after the transplant, December 2nd was like an extra birthday. When Zoe was in elementary school I made and sent heart shaped goodies for her to share with her class and she got gifts. As a kid who already had a lot of stuff, this got old (for my bank account) really quickly. We wanted to celebrate the day, but I wanted to do it in a meaningful way. A few years in, I got the idea of a Christmas ornament since her heartiversary is in December. Every year, I give her an ornament and the goal is that someday, when she’s grown and has a tree of her own, she will have all these special ornaments to decorate it with.

This year Zoe turned 17 and got her license and her dad got her a car. She looks pretty cute tooling around town in her tiny red hot wheels car. She started her Junior year of high school and is starting to think about plans for College. She attended Homecoming in October and made the HONOR roll for the first grading period. Now that I have the proof that she’s capable of it this means a lot less slack than she’s gotten in years past. #sorrynotsorry

Her heart is in great shape. Her stomach issues remain a mystery though and GI believes she’s lactose intolerant. Getting Zoe to stop eating dairy seems to be an uphill battle. FOR THE LOVE OF ALL THAT IS HOLY…STEP AWAY FROM THE CHEESE STICK! Some of her kidney function tests came back increased a couple of months ago so her Tacro dose has been slightly lowered and she’s got an appointment to check in with nephrology in January. Yay! A new specialist.

As always, we’re eternally grateful.

The event takes place at Blossom Music Center in Cuyahoga Falls on Saturday, August 17th and features a 1 mile walk, timed 5k run and a timed 10k run. There are family friendly events and vendors at the event as well.

Using the link below, you can make a monetary donation or join the team!

http://golwr.lifebanc.org/site/TR/CharitableRace/General?team_id=1344&pg=team&fr_id=1070