Living with Polycystic Kidney Disease (PKD) has been an adventure. It isn’t my whole story, but it is a tale worth telling.
Established 1985
The first born, the first grandchild, the first kid in at least a tri-state area whose first word was “Condensation,” and… the second person in the family to be diagnosed with PKD. It is a genetic disease passed from parent to child, and I was diagnosed early on in life following the diagnosis of my dad, Steve.
The Podesta Namesake
If you hang around long enough you’re bound to stumble on a Jack Podesta quote. He is the Man, the Myth, and the Legend. Along with another legend, my Grandma Doris, they adopted my dad at his birth. It wasn’t until my dad was in his late 20s that he was diagnosed with PKD. My brother Joey also has the disease but fortunately at nearly 34, he is mostly asymptomatic.
(Blended)Family Values
My mom and dad, my step-parents, and grandparents (maternal and paternal), all made sure that Joey and I knew that even when “the original” family unit changes in size or distance, it is still possible to sustain relationships with respect and love. And they meant it. My paternal grandparents even attended my mom’s wedding to my step-dad. Lead with love (and have an open bar!) They also taught me that a family includes people you choose to be there, friends you choose as family.
The Wedding Date
Ashley walked into my life in the summer of 2009. I was home visiting my parents in Napa Valley California. Having been friends with my parents for a few months at the time, when she found out my dad needed a living kidney donor she went and got tested to see if they were a match – and was ready to donate if they were (they weren’t). She needed a plus one for a backyard wedding towards the end of the summer and invited me to join her – and that is when she found out that I would also (eventually) need a transplant. She offered her kidney to me on the spot. I knew she was serious, and I haven’t been able to get this generous, beautiful, and brilliant woman out of my head ever since.
A Living Donor Hero
Victoria is my dad’s kidney donor, and a genuine hero to be celebrated. In November 2011 she literally saved my dad’s life. It is rare that at 25 you get to observe genuine altruism – but I did. Before becoming a living donor for my dad, Victoria knew my parents only casually. She heard he needed a kidney, she went and got tested, and never looked back (and was a “near perfect match” according to the transplant team). Of course, being a hero wasn’t really new to Victoria, she is also a mom of two successful daughters and a military veteran. She gives me hope.
Life to the Fullest
Short of high blood pressure, life up through my early twenties had very little physical impact from the PKD. But If this photo is an allegory for renal failure – then this is me at 25 and the quickly approaching ground is my 35th year of life.
Slim Fit
There was a blip in the universe in 2012 and it was the first and last time I would ever squeeze my kidney belly into something labeled “slim fit.” It was a suit vest miracle (and in honor of my Best Man responsibilities for my buddy Gino’s wedding).
Event Coordinating and Wine Educating
Standing INSIDE of a hot air balloon is kind of like having > 60% kidney function – You feel fantastic! The 7+ years Ashley and I lived in Napa together is central to our story. During this time I worked for Flora Springs Winery, starting out as a Tasting Room Associate, and working my way up to Wine Educator and Event Coordinator. I love talking to people (my family likes to call me “the Mayor”) and while I can’t remember names, I make sure they never forget mine. If someone in the tasting room asked me my name a second time, I always responded the same – “Jake, from Statefarm.” It’s safe to say that the line was hit. Through many of my interactions at the winery I was fortunate to make incredible connections and dear friends. (This post is not sponsored by Statefarm).
Does this #PKDBelly Make Me Look 35?
No, but really, does it? Just a few days after this picture was taken I got the call from my doctor, and the news was official – I hit the 20% kidney function threshold and we could begin the Transplant journey. I was told to prepare for a Transplant (or Dialysis) in 6-12 months.
Not a Match
You know what they say about best laid plans, right? Exactly. When we learned that Ashley isn’t a match as my living donor, to say that we were crushed simply won’t do it justice. This was our plan for nearly 12 years! A few weeks after learning this, we found an article from 1992 in the Chicago Tribune online archives about a husband donating his kidney to his wife unexpectedly. The donor was quoted saying “I just had a feeling” to which the journalist wrote… “A statistician would have called him crazy. The odds of receiving a kidney from a spouse are about as good as being able to get one from the person sitting next to you on the bus and falling in love with that person as well.” Well, damn! And just like that we were able to share our first laugh over it. This most certainly won’t be our only detour, but together we will continue to find new ways to laugh through the pain.
Three Cheers for 2021… and Transplant Lists!
When your only option is to stay at home for NYE, but you also have cause for celebration, you get dressed up in your best “luxury” PJs. (And, we weren’t just saying Good Riddance to 2020!) Sadly, just because you need a kidney transplant doesn’t simply mean you get on “the list”… there are several layers and more than one list. In addition to the Deceased Donor Waiting List, and this quest for a Living Donor match, we’re currently on the waiting list for a Paired Kidney Donation. Essentially, I get to offer up her A+ kidney as a swap to a person on the transplant list who needs an A+ kidney and just happens to have an O+ kidney donor waiting in the wings for me. We’ll always bet on us, but we’re putting all our chips on the table that a Living Donor Match will be found.
Off to a Rough Start
PKD is a brutal disease. As cysts burst, the kidneys swell, function is reduced – and you’re left as a shell of the person you want to be because of the pain. Sometimes I can feel better in a 2-3 days, but in February (in the middle of the Texas Snowmageddon) I went down for the count for over a week. If I’m being honest, it was a turning point in this journey and my new baseline for “feeling good” – doesn’t really feel good. But it is much better than the alternative. I might not be a doctor, but I would prescribe a heating blanket and a dog to cuddle with.
The Loss of My Hero
Ashley’s favorite TV show is How I Met Your Mother, and there is a beautifully heartbreaking scene where one of the main characters learns his father has died. As his wife embraces him he cries out, “I’m not ready for this!” Simply put, I will never be ready for this. My heart is broken. In the midst of everything else going on, I recently lost my beloved dad, Steve. We were given these last 10 years with him because of the life-saving action of his living donor Victoria, and he wanted nothing more than to see me successfully through this journey. He roared in this life, loved deeply, and truly lived in his every adventure. The size of his personality and his heart simply can’t be measured. (He’s also probably going to be disappointed in me that I didn’t go for the obvious joke about what else couldn’t be measured.) There is nothing he loved more in this world than his two sons. He didn’t just have one North Star – he had two. I know that he will continue to walk with me in this journey, keeping watch over me and my family. I love you Pops, you are so missed.
We Found Her!
Or rather, just as you’d expect from a Superhero – she got here as fast as she could. On July 9th 2021, my living donor match was approved by the Transplant Committee! Because she is also someone who I’ve been lucky enough to have as a friend from my time in Napa, she called me as soon as she got the news. Typically, a transplant recipient wouldn’t be alerted until the donor has confirmed a surgery date and the call would be made by the transplant team – so my phone call from her was extra momentous. The week earlier she had traveled to Texas (along with her husband and their two kiddos) to complete the final round of testing. I can’t wait for you to get to know this Earth Angel who is “sharing her spare” kidney with me and saving my life. I am truly honored to introduce you to Mary Beth – MB – and my Kidney Transplant Journey’s MVP!
41 POUNDS(!) Of Kidneys
In honor of PKD awareness day, we shared this post on September 4th 2021, and it was picked up by the PKD Foundation and shared on their social media platforms. The response was monumental and we took painstaking efforts to reply and/or acknowledge every post. Comments like “This should be required reading,” and “I wish more people knew about this disease and what me and my family have to fear and go through!
The post was quite the foreshadowing because we only had a “best guess” in size… and on September 22nd I had a bilateral native nephrectomy where the surgeons removed 41 pounds of kidneys. One weighed 20lbs and the other just over 21 lbs.
From the post: “Saying goodbye to the kidneys I was born with means I also get to say sayonara to some pretty awful side-effects from the havoc they wreak. Like not being able to breathe while walking because they’re pressing on my lungs, or not being able to tie my own shoes because I can’t bend over and reach them. Or for the love of god never having a shirt that fits.
There is no cure, but there is hope. I am not alone, there about 600,000 people just in the US and another 12 million more worldwide who share this same (Autosomal Dominant Polycystic Kidney Disease) Diagnosis. The PKD foundation is doing tremendous work through their research and advocacy and please join me in supporting the cause to #endPKD. “
#BeLikeMB
On September 23, 2021, MB saved my life. She is a hero, and also an advocate for making a difference in the world – specifically showcasing that we are all in this together – and that all it takes its one person to be the change we want to see.