On January 10, 2024, Tom O'Keefe received a life saving kindey donation from his Stride for Stride teammate, Jorge Rosales.
On November 3, 2024, Tom and Jorge will run the NYC Marathon together. Kidney donor and recipient running 26.2 miles, stride for stride - something that has rarely been done before.
This book is the story of how being kind and empathetic to others gave Tom the greatest gift of his life.
For a signed and physical copy of this book please Venmo $25 to @Bostontweet (Tom O'Keefe) with your name and address. US ONLY. To read the entire book just keep scrolling down. Please feel free to contact me.
Kindness: How a Simple Act of Kindess Can Save Your Life
New Year’s Day 2024
It was only two hours into 2024 and I had already vomited a few times after midnight, and it had nothing to do with New Year’s Eve celebrations.
My kidney transplant was just ten days away, and up until this weekend I had very little symptoms or side effects of Chronic Kidney Disease (CKD), other than extreme fatigue. I just ran the B.A.A. Half Marathon in November with a 10% GFR, and I went on 5 mile walks every day in December. However, on New Year’s Day I feared my luck was starting to change.
After a sleepless night, and a rough morning, I finally told my wife, Bridget, that I needed to go to the ER. We arrived at Beth Israel Deaconess Medical Center (BIDMC) around 5pm and they quickly started running a number of blood tests on me. They soon discovered that I had an extremely high buildup of urea nitrogen in my blood (uremia) - the reason for the vomiting - and that I would have to go on dialysis to get me ready for my transplant on January 10th.
In just two weeks from my last nephrologist appointment my numbers had plummeted. We immediately had to get my body stable before my transplant surgery.
Dialysis is something that I desperately tried to avoid, and I almost did, but my body finally gave out one week before my transplant. Now, for the first time, I finally saw how severe CKD can be, and it terrified me. I would start my first dialysis session on January 2nd - just eight days before my surgery.
November 3, 2019
Stride for Stride was growing nicely during our first year of running in 2019. It was now almost the end of the season and we had one more big race to run, the Cambridge Half-Marathon. Cambridge was turning out to be our biggest race yet with ten sponsored runners competing in the 13.1 mile race.
We had a few of our original runners in the race, Estuardo, Jess, and Doug. And, we had a few runners joining us for the first time; Dalia, Mario, and Jorge.
The relatively flat course takes you 13.1 miles from East Cambridge, through Kendall Square, along the Charles River to Harvard University and back to East Cambridge. I absolutely love the half-marathon - it’s the perfect distance. The half challenges your endurance level, but it doesn’t crush you like a marathon. And, you don’t have to spend months training for it.
We all ran a great Cambridge Half and after the race we gathered at the Stride for Stride tent to hydrate and talk about running, as runners do. This was the first race that Stride for Stride had a post-race tent so I was extremely happy about that too. The post-race celebration is one of my favorite things about running - everyone is happy. First time runners are elated that they accomplished an incredible physical feat of 13.1 miles And, season runners are celebrating a PR or another medal for their collection.
During these post-race celebrations we take a lot of photos. To this day, Team Stride for Stride loves taking team photos - they create great memories. What I love most about the old team pics is seeing how we’ve grown and seeing all the lives we’ve changed. Recently I’ve been looking back at the team photo from November 3, 2019 a lot. There are only six runners in this picture; Joshue, Bridget, me, and our new runners, Dalia, Mario and Jorge. All of us are smiling in the picture, but what strikes me most about this picture is what I didn’t know at the time.
First, I didn’t know that I would soon be diagnosed with Chronic Kidney Disease (CKD). And second, I didn’t know that the man in the picture - the man I just met - would someday save my life.
August 2018
In early August 2018, Bridget and I went on a two week road trip in California. We started in Venice and eventually made our way to Sonoma for her brother’s wedding. The California coast, especially from Napa to Big Sur, is spectacular. I highly recommend the drive along PCH, even though some parts are terrifying.
California was a time for us to disconnect from social media. It was a time to connect with the California coast and to connect with each other. It was also a time for me to think clearly about an idea that I had been working on.
It’s amazing how ideas come to you when you disconnect from the phone and you put yourself in a new environment - an environment that is outside of your comfort zone. I highly recommend disconnecting and thinking about ways to make a positive impact in people’s lives. One book that greatly inspired me during this trip was, ‘Start Something That Matters’ by Blake Mycoskie.
The idea I was working on back in Boston was how to make road races more diverse and more accessible. I knew the goal that I wanted to reach, but I didn’t know how to accomplish that goal. California gave me the clarity I needed to finally create a non-profit that would soon become Stride for Stride.
In August 2014, I ran my first race, the Falmouth Road Race. Ever since that race I had become an avid, and sometimes fanatical, runner. That race changed my life. Falmouth gave my running purpose. Running with 10,000 runners and having thousands of spectators cheer me on was a joy I had never experienced before. It was incredible and I wanted everyone to feel that joy. Crossing the finish line is more than just that moment. Finishing a race is empowering in life. It gives you the confidence to accomplish whatever you set your mind to. It also gives you a commonality with other finishers, no matter how much they make or where they come from.
After Falmouth I started running a lot of races, including five consecutive Boston Marathons. Two things that I learned during those races were; races are expensive, and races lacked diversity. While running these races I wondered why more people of color and immigrants weren’t running, even though I knew there were great runners in both groups. California gave me the clarity I needed to come up with a simple solution to that problem.
Somewhere near Santa Barbara I came up with the idea of buying race bibs for immigrant, BIPOC, and low-income runners with the goal of increasing the diversity of and the accessibility of road races. It’s a very simple idea, but an idea that took many months to come to fruition. There are a lot of barriers that prevent one from running. However, the one barrier that I could easily tackle is eliminating the financial limitations that prevent many good runners from running races.
With the idea in place I started working on the logo (an equal sign), and the non-profit business plan that is now Stride for Stride. After a few months of preparation I was able to launch the organization in November 2018. It took a few months to find our first sponsored runner, Estuardo, but once he joined the team I knew Stride for Stride would make a difference in people’s lives.
Today, Stride for Stride sponsors 400 runners from 26 different countries. We’ve spent $170,000 on race bibs and the team has run 550 races, including most of the major world marathons.
Races can be very expensive and that often prevents people from running. I wanted everyone to feel the joy of crossing the finish line, no matter if they could afford the bib or not.
Back when I drafted the idea in California I never knew that this simple idea would change the lives of 400 people. I never imagined that my act of kindness would change my life in so many ways. And, I never knew that it would introduce me to the man who would one day save my life.
July 20, 2020
On July 20, 2020, Bridget and I were home watching The Bachelor - we’re obsessed - when I received a call from my rheumatologist. He called to tell me that my potassium level was extremely high and I needed to go to the ER immediately. The last thing I wanted to do on a Monday evening was go to the ER.
High potassium has never been a problem for me so I had to Google “Hyperkalemia” to see what the concern was. I quickly discovered that high potassium is a very serious issue so I went to the ER that evening.
A little background; I have a blood disease called Poly Vera, which means my body produces an excess amount of red blood cells. Red blood cells carry oxygen and the more red blood cells you have the higher your ability to perform physically at elite levels of cycling and running. Basically, my body produces naturally what cyclists are famous for achieving via doping. However, there are some serious side effects with high red blood cells and it’s not something to mess around with. I’ve treated it very effectively over the years with meds and/or phlebotomies.
Back to the ER; it turns out an incorrect blood test was used to test my potassium, due to my Poly Vera, and the correct test showed my potassium level to be totally fine. Crisis averted, except that we missed The Bachelor. However, they wanted to keep me overnight to run more tests just to make sure. I can never sleep in hospitals, but I always prefer being on the cautious side of things and taking the advice of doctors.
The next morning a nephrologist (kidney doctor) came into my room and asked me if I had foamy urine. I said; “Yes. Of course. Doesn’t everybody?” The doctor said; “No. Foamy urine is called proteinuria. It means your kidneys can’t filter protein from your blood so therefore you excrete protein via your urine. The protein is what makes your urine foamy. You have Chronic Kidney Disease.”
The diagnosis of Chronic Kidney Disease hit me like a ton of bricks. I couldn’t believe it. Me? I didn’t have diabetes, I ran marathons, and I watched what I ate. How did this happen? We didn’t know.
To this day we have absolutely no idea how or why I developed CKD. Two kidney biopsies later and we still didn’t have an answer. Not knowing why made it very difficult to treat.
So in 2020, my only course of action was to stay as healthy as possible (diet and exercise) and hopefully my CKD would take ten years to become serious end-stage renal disease. It took less than two.
Side Note: If you have foamy urine - I’m talking bubble bath foam - then call your PCP immediately. Have your doctor check your Creatinine level (blood test) and urine output. The sooner you know the sooner you can make changes to your diet and lifestyle and hopefully prevent end-stage renal disease.
Spring 2022
Up until Spring 2022 I was doing great. CKD didn’t slow me down one bit. I was running a lot, Stride for Stride was growing, and Bridget and I got married in June 2021 at the Harborview Hotel in Edgartown. Life was good. Very good.
Then something happened. My GFR (measure of kidney function) plummeted from the 60s in early February to the mid-20s in May. I felt the decline immediately in my running. What used to be a breeze running ten miles, now became a struggle to run just two. And, I had to nap after running just two miles.
I had weekly nephrologist appointments and we tried a few IV sessions of a monoclonal antibody to stop the decline, but it didn’t work. In May I was admitted to BIDMC and they hit me up with a heavy dose of steroids. After a few weeks that didn’t work either. What else could we do?
One beautiful May afternoon my nephrologist called to say it’s time to start preparing for a transplant. I was devastated. I was shocked. How did this happen?
After receiving this transplant news I thought I could no longer run. I actually took a week off from running because I assumed something that was entirely incorrect - I was being pessimistic. During that week I realized how easy it is to give up when you receive a diagnosis like end-stage renal disease. However, I didn’t want to give up, and I didn’t want to stop running. If I was to get through this then I would need to be as healthy and as active as possible. One week after that call I went on an incredible 10-mile run along the Merrimack River in Newburyport, MA. It was incredible not only for the pace and distance, but even more so because it gave me the confidence to never give up. After that day I never stopped running and I quickly focused my emotions on optimism. I was determined to find a donor.
Thankfully it didn’t take long to find a donor because once my cousin Colleen heard the news she quickly signed up to donate her kidney to me. She never hesitated, not once. And, our blood type matched - an essential first step in the kidney donation process.
Having someone offer to remove their kidney and give it to you is an extremely emotional experience. It’s one of the most selfless acts that someone can do for another. I was floored by her love for me, and for the first time since my diagnosis, I cried. I cried a lot for the incredible sacrifice she was about to make for me.
Kidney donors give people hope. I now had hope that I would get through this, thanks to the love and kindness of a family member.
March 17, 2023
On March 17, 2023, I was on CBS NYC to talk about running the NYC Half with CKD. We talked about my excitement of running through my dad’s hometown of Brooklyn, and my desperate need for a kidney. Desperate need? The day before my CBS interview my cousin Colleen called to tell me that she was rejected as a donor. We both were crushed, and we felt defeated.
For roughly eight months Colleen underwent extensive testing to hopefully be my match. Kidney donors sacrifice a lot of time to be your donor - another fact that makes them superheroes.
In order to be a kidney donor you must be in exceptional health - the doctors want to ensure that a donor will never have CKD in the future. Becoming a kidney donor will give you the most extensive physical you’ve ever had, and the recipient’s insurance pays for all your medical bills - in case you need additional motivation to become a donor.
Colleen is my closest cousin, and my mom’s favorite child, and from day one we thought she would be a perfect match. My mom would’ve been so proud of Colleen. However, it wasn’t meant to be. When I walked into CBS NYC I was quite dejected, and I didn’t know what to do next about a donor.
While I was feeling blue, my Stride for Stride teammates were taking action. Stride for Stride has a very active WhatsApp group and word spread that my cousin was rejected as my donor. They have always been incredibly supportive of me, and little did I know that two of them were taking the first step in saving my life.
As I walked out of the CBS studio onto 57th Street I received a call from Jorge. He called to tell me that he just registered to be my donor. Our teammate Jessica registered too. I couldn’t believe what Jorge just told me. I couldn't believe that this man, who at the time I onlyI knew for four years, would give me this life-saving act of kindness. What started out as a rather gloomy day quickly turned into euphoria. I once again had hope. Hope is so important for kidney patients - it keeps us moving. I was also extremely grateful for my wonderful teammates, and hopeful that Jess or Jorge would be a match.
Just having someone offer you their kidney, whether they’re accepted or rejected, is an extremely overwhelming and emotional experience. It’s a tremendous act of selflessness and the ultimate act of kindness. Kidney donors are exceptional human beings.
For kidney patients in need of a kidney you must tell everyone you talk to that you’re in need of a kidney transplant - you never know who your superhero might be.
Heart to Cart
In an Outside Magazine article Jorge was quoted as follows;
“I saw everything Tom was doing to help people during the pandemic,” says Rosales. “He was always worried about [Stride for Stride runners], asking us how we were doing. He’s one of the kindest people I’ve ever met. I’d love to help with anything he needs.”
Kindness matters.
There’s nothing scarier than struggling to eat. During the early days of the pandemic I knew a lot of Stride for Stride teammates, their families and their communities, who were out of work and struggling to eat. At the same time, Bridget and I went to the supermarket and bought $200 worth of groceries. I remember looking at the cart and thinking how fortunate we are that we could afford to purchase all this food, especially since I knew people who couldn’t.
That evening I came up with the idea for Heart to Cart - a program that purchased supermarket gift cards for people who were struggling to put food on the table during the COVID-19 pandemic.
I quickly created a logo and a website to promote our program. By the next morning I was ready to tweet about Heart to Cart - at the time I had a very popular Twitter account called Bostontweet. I sent a tweet and to my delight I raised over $5,000 on the first day. We were ready to start buying $100 supermarket gift cards.
Bridget and I distributed cards outside the Chelsea Collaborative (a local food bank) and we mailed cards to those who requested one via our website. The demand was extremely high so I continued promoting Heart to Cart on Bostontweet.
One afternoon outside the Collaborative we handed out $4,000 in supermarket gift cards in under 10 minutes - the demand was that high. Unfortunately, we didn’t even come close to giving a card to everyone waiting in line that day. That was the toughest part - not being able to help everyone.
Throughout the year, Heart to Cart distributed $70,000 in supermarket gift cards to immigrant communities in East Boston, Chelsea, Everett and Revere. These were the Boston communities hit the hardest during COVID. Many lost their hospitality jobs during the early days of the pandemic. Those who still had jobs couldn’t work remotely like corporate America - they were essential workers in supermarkets and hospitals. Factor in multi-generational housing with a dozen people living in one apartment and you had COVID hotspots popping up everywhere.
Heart to Cart was a simple act of kindness to hopefully make someone’s week a little less stressful. I highly encourage anyone to copy this program in their community. It’s simple to do; Focus on local. Start by helping people in your community. Raise $500 in donations and purchase five $100 supermarket gift cards. Give them to someone who is struggling. If you don’t know anyone then ask a local food bank for someone who needs food assistance.
What if just 100 people did this? That’s 500 families whose lives were made better because of you. That’s making an impact in this world. I often like to say; “I can’t help everyone, but everyone can help someone.” That’s all it takes.
I didn’t start Heart to Cart to get anything in return. However, years later my actions resulted in the greatest gift of my life - a pure act of kindness.
Summer 2023
Every year since 2021, Stride for Stride gives our runners a weekend at AutoCamp Cape Cod for those running the Falmouth Road Race.
In 2014, I was lucky to be given a bib and a weekend stay in Falmouth by New Balance - the title sponsor of the road race at that time. Without that opportunity I might not have ever started running.
Falmouth changed my life, and every year I give my team the same life changing experience that I was fortunate enough to have in 2014. Falmouth is the weekend when Stride for Stride transforms from a running community to a family. We spend the weekend biking to the beach, playing lawn games, cooking outside on the grill, running the race on Sunday, and bonding about the race and what the team means to us.
Falmouth is a lottery so we never know how many runners will be joining us. Our first year we only had eight runners, we grew to a dozen in 2022, and in 2023 we had close to forty. During these Falmouth weekends it’s obvious that Stride for Stride is more than just running. It’s also about hope, empowerment, belonging, happiness, and family. The team is always full of hope after our weekend retreat, and in 2023 Falmouth gave me the greatest amount of hope I ever knew.
On the day before the race Jorge took me aside to tell me that everything is looking good. All the tests performed so far look like he’ll be my donor - a perfect match. He only had one more test to go, which was scheduled for early September.
Over the past few weeks I was getting very anxious to hear some positive news about Jorge being my donor. During Falmouth weekend Jorge made it happen. Kidney donors and kidney recipients have two separate medical teams who cannot share information with each other. It’s up to the donor to share results with the recipient - this is to protect the privacy of the donor’s medical information.
After the race Jorge and I told the team, while sitting around the bonfire, that in all likelihood he would be my donor. There were cheers and tears after we broke the news. I was extremely happy, but I was also extremely nervous about that final test.
Running is the bond that initially connected all of us, but it is the love of our running family that truly bonds us together. It doesn’t matter who you are or what country you’re from - we are all one.
October 3, 2023
The call. I’ve heard others talk about “the call,” but I hadn’t experienced it for myself until October 3, 2022.
I woke up from a nap - something I was becoming quite good at - to see I missed a call from Jorge. I knew the call was coming, but I also knew there was one more test that could sideline Jorge as a donor.
When I called Jorge back I had a huge weight on my chest. I knew what I was about to hear would determine my future. Either Jorge would be my donor and I could go on living a normal and active life. Or, Jorge was rejected which meant that I would most likely go on dialysis and I would need to start the donor process all over again.
Jorge answered and we chatted a bit about running, as runners tend to do. I was so anxious for the news and then Jorge said; “I just received a call from the doctor, and she said I’m 100% compatible.” The weight on my chest became a feather. It was the greatest call I had ever received in my life. I was getting a kidney and this great man would be my donor. I thanked him endlessly for his incredible gift that will forever bond us as brothers.
I can’t stress enough; kidney donors give kidney patients hope. Kidney donors hang on for a long time to receive “the call” that their life is saved. I waited a year and a half, but most CKD patients wait a lot longer than me. I pray for them and urge you to become a superhero to someone you know or someone on dialysis.
Kidney donors live long and active lives. Donating a kidney will not stunt your life. It will not limit your physical and athletic capabilities. Only the healthiest individuals are approved to be a donor. If you’re approved then you know you’re in exceptional health, and you have the joy of knowing that you’re saving a life.
After the call I went into Bridget’s office to give her a hug. I said; “Jorge is 100% compatible.” We cried. We hugged.
November 12, 2023
Throughout my 3½ years with CKD I never stopped running, except for that one week. Every Saturday I would either run 9 miles with my team along the Boston Marathon course, or run 10 miles along the Charles River. I truly believe that staying very active prevented me from having any swelling and it kept me off dialysis for almost my entire time before transplant.
In November 2022, I ran three back-to-back half marathons in Cambridge, Boston and Philadelphia. In March 2022, I ran the NYC Half for the first time. The NYC Half is an incredible experience that starts in Brooklyn and runs into Manhattan, through Times Square (amazing!), before finishing in Central Park. This race was very special to me because it was my first time in Brooklyn (shocking, I know), and the first time I saw the streets and neighborhoods that my dad grew up on.
During the summer of 2023 I had one of the best summer training cycles that I’ve ever experienced - I usually hate running in the summer heat. This summer I consistently ran 10 miles every Saturday along the Charles and I was in great shape for the Falmouth Road Race in August - always the hottest race of the year. This year was my 10th consecutive year running Falmouth and I got to experience it with 40 runners from Team Stride for Stride.
Throughout the fall - my favorite time of year to run - I continued running more than ever. I felt best when I was running. Extreme exhaustion would often set in after a run so I usually needed to nap for two hours when I got home. That was totally fine as long as I could still run.
This brings me to the B.A.A. Half Marathon on November 12, 2023. Stride for Stride had 52 runners in the race and I wanted to join them for one last half before my transplant in January. My GFR had dropped to 10% before the race and extreme exhaustion was definitely setting in. However, I wanted to run with Jorge and my team.
As always, the B.A.A. Half was a cold start. I biked to Franklin Park from Brookline and I felt like a popsicle once I arrived. Most of the team was already there and we snapped a team picture and started the race at 8am.
This race was extremely important to me. I wanted to show that I could still run a challenging race like the B.A.A. Half, and I wanted to show others to not give up when times are tough. This was the most difficult race I ever ran. I was extremely tired from CKD. If it wasn’t for my teammate, Kalliman, who stayed with me the entire 13.1 miles, I probably wouldn’t have finished the race.
2:30:00 hours later I finished the half - roughly fifty minutes slower than what I was running just two years earlier. However, I didn’t care about my time. I finished the race and I’m extremely proud of that. Now it was time to focus on my next challenge - my kidney transplant on January 10th.
January 2, 2024
As I was being rolled through the doors of the 7th floor at BIDMC I saw the sign ‘Hemodialysis’ at the end of the hall. The reality and the severity of my kidney disease hit me hard at that moment. I was overwhelmed with emotion and a steady stream of tears poured down my face as the nurses hooked me up to the dialysis machine. The machine would do what my kidneys were no longer capable of doing - removing excess waste from my body.
Dialysis is hard, it’s really hard, and I pray for everyone going through it. I was lucky because I had a donor and in all likelihood this would be a temporary obstacle on the road to January 10th. Dialysis is extremely draining on the body and you must be hooked up to the machine three days a week for three to four hours each visit.
Since I had only a week until my transplant I was required to be on dialysis for five consecutive days. January 2nd was my first session at BIDMC. It was a very difficult week for me, but it taught me two very important lessons.
First, CKD is a very serious disease. For the 3½ years that I was living with CKD I never had any serious symptoms other than fatigue - something we all feel. The reality of my week on dialysis scared me into respecting the severity of the disease. Up until this point I didn’t know how sick you could truly get. It made me even more grateful for my donor, and the incredible gift Jorge was about to give me. It also taught me to protect this new kidney with everything I do.
Second, my week on dialysis showed me what an incredible nurse my mother was. Hemodialysis nurses are meticulous. They are some of the most dedicated and thorough nurses I’ve ever encountered. Annie, Claire, Anne, and Lilly - all the nurses who took care of me on dialysis - are exceptional nurses.
As I was being wheeled into the hemodialysis unit on that first day I not only thought of my own mortality, but I also thought about my mother. You see, my mother was a hemodialysis nurse too. Back in the 80s I used to sit with her patients to keep them entertained, while my mother moderated their blood pressure, and connected their blood lines. Hemodialysis was something that I feared since I was a child in the 80s. Now that I was a patient, it made being on dialysis very emotional for me.
My mother has been deceased for six years, but for the first time in my life I finally understood how meticulous my mother was as a nurse, and how kind she was to her patients. All of the hemodialysis nurses that I had during those five days not only got me ready for my transplant, but they also showed me who my mother was and how much compassion she had for her patients. For that I will always be grateful for my very challenging and very emotional week on dialysis.
January 10, 2024
The day had finally arrived. The day I had been waiting for since May 2022 when I was first told that a kidney transplant was my only option.
First, let me stress that I’m very lucky. I’m very lucky to have a living kidney donor and I’m very lucky that I only had to wait 1½ years. Many people are on dialysis for years and never get off the machine. CKD patients on the transplant list (deceased donor) have to wait five to seven years in Massachusetts. I’m lucky, and I know it, but even still, waiting 1½ years for this day felt like an eternity. Never knowing if your donor would be rejected, and if you have to start the process all over again.
Every time I saw Jorge he would always say; “I have a spare kidney for you.” At the time I thought my cousin Colleen would be my superhero, but she was rejected. Two days after Colleen was rejected Jorge signed up to be my donor. I am eternally grateful for Jorge and his family for their tremendous sacrifice, their kindness, and their life-saving gift. Today I am about to see Jorge at BIDMC before we become bonded for eternity. Before he gives me life.
Bridget and I arrive at BIDMC at 8am. Jorge is already in pre-op when we arrive and we see his wife Ruth. We hugged. Donating a kidney is a family decision. I am just as grateful for Ruth and their three children as I am for Jorge. They have all made a decision to support their father in his tremendous gift of love and kindness.
Soon I too am called back and my stretcher is placed next to Jorge. Emotion overcomes Bridget and me the second we see this great man. In fact, I broke into tears every time I thought of Jorge during my five days on dialysis. We are so grateful for him, and grateful for all kidney donors.
Jorge is excited, as he has been since day one. He’s not nervous at all. I’ve always been floored by his excitement to donate a kidney to me. I’m in awe of Jorge. I on the other hand am a tad bit nervous, but excited to start my next chapter in life. I know the next few months will be tough, but I’m ready to move forward.
Jorge is transferred to the operating room about thirty minutes before me. Jorge and I will be in adjoining operating rooms - he has his own team of surgeons, and I have mine. They literally remove his kidney, and run it to me within minutes.
Back in pre-op I’m waiting with Bridget before going into surgery. Bridget is my rock. She is my love. There is absolutely no way I could’ve gotten through the week of dialysis and the transplant without the support of my incredible wife. I know Jorge says the same about Ruth. Dialysis and my transplant were very stressful for Bridget, and I worry that I’m giving her too much to handle, but I also know that she is an incredibly strong woman. Even with that stress she is there for me every step of the way - I’m eternally grateful for her love.
The time is now 10:30am and the surgeons are ready for me. I give Bridget one more kiss and I’m wheeled into the OR. While being wheeled they give me an IV med to relax and I’m quickly out of it. I don’t remember anything else until I wake up six hours later.
Sometime after 4pm I came out of my fog in post-op. The doctors stopped by to tell me the operation was a success. Bridget was given the good news around 3pm - I’m relieved that she is now relieved. I then have a wave of emotion come over me. I get very emotional. I think of Jorge. I think of Bridget. I’m extremely grateful for both of them and the incredible team of nurses and doctors at BIDMC. I waited in post-op for a few hours, but it flew by. I was so happy to have a fresh start. I was very happy.
The easy part (for me) was over. Now I was about to enter an entirely new world of immunosuppressants, steroids, and blood tests.
Post-Transplant (Hospital)
I was in the hospital for only four days after my transplant - Jorge was discharged one day before me. It’s amazing how fast you’re out of the hospital following major surgery, but considering how immunosuppressed I was it’s certainly best to get home ASAP.
The nurses on the transplant floor were exceptional. They checked on me frequently and they were meticulous with the meds that were now a daily part of my life. The nurses and pharmacist walked me through each med, their function, and when they need to be taken.
Being comfortable with the anti-rejection meds was one of my biggest concerns. You can’t mess around with these meds - they need to be taken on a strict 12-hour cycle and you can never miss a dose.
The first day post-op I was eager to get out of bed and walk the hallway. Getting out of bed and standing upright was the hardest and most painful part. However, once I started moving I felt okay. I felt like I could recover from this major surgery that I just had. After a few laps down the hall I was back in bed. Baby steps.
Another challenge for me was the lack of sleep - I maybe got two to three hours each night. The beeping machines, frequent vitals, uncomfortable bed, and hallway noise made for many sleepless nights. I was worried that I wouldn’t be alert to understand my meds and to chat with the doctors. Thankfully I remained fully alert.
I tried everything to sleep. I listened to a lot of white noise, green noise and even a podcast called “Boring Books at Bedtime,” which was exceptionally boring. I took some sleeping meds. Nothing worked. I eventually surrendered to my insomnia and watched back-to-back Hallmark movies at 3am - I’ll sleep when I get home.
The nurse would come in at 6am for my meds and by 7am my team of doctors would visit me too. And by team I mean a baseball team of eight or nine doctors each morning. That’s one of the things I love most about BIDMC; you have so many minds working your case. It’s not just one doctor making the decision. BIDMC is a teaching hospital with Harvard Med so there are also med students, interns and fellows with fresh perspectives. It’s extremely comforting having so many intelligent professionals looking out for you.
Then around 11am Bridget would arrive with a piping hot container of homemade chicken soup - my favorite part of the day. The delicious chicken soup was such a welcome break from hospital food. Everything you’ve heard about hospital food is true - it’s not good.
After a few days of recovery I was ready to go home. I was ready to start my new beginning with my life-saving gift from Jorge. I was excited to leave the hospital, but I was also extremely nervous to leave its protective confines.
Post-Transplant (Home)
The first two weeks after transplant were some of the hardest two weeks of my life. A lot of people think that once you have a new kidney then you’re ready to run - sort of like replacing a battery. It’s absolutely nothing like that.
First, you’re incredibly sore from the incision that stretches up your belly. I see the incision everyday in the mirror and it’s absolutely beautiful - it reminds me of the incredible gift I’ve been given - but it is painful. If you don’t know; a transplanted kidney is placed in your abdomen. The renal vein, renal artery and ureter are then rerouted and connected to the bladder. My original two kidneys remain intact - I now have three kidneys, even though only one is functional.
Second, you’re highly immunosuppressed. As my nephrologist said; “We take a hammer to your immune system.” The reason for this is to prevent my body from rejecting this new organ. I’ll remain highly immunosuppressed for a few+ months, and during this time Bridget and I need to remain isolated from other people. Bridget is working from home until March and I’m rewatching Seinfeld, Ted Lasso, and Love Sick episodes - I find laughter to be very therapeutic. We’re eating great (thank you Bridget) and after a stressful first week we’re both getting into the groove of post-transplant life. Thankfully my recovery comes during the cold Boston winter so we’re certainly not missing much outside.
Third, you have to measure everything. You have to measure your urine output, measure your drain output, take your temp, measure your weight, and take multiple blood pressure readings throughout the day. None of this is hard, but you do have to be very well organized and in full control of your recovery. Every number is important, but I definitely longed for the day when I could pee like normal.
Fourth, you have two blood tests each week along with at least one doctor appointment each week too. This might not sound like a lot, but when you’re exhausted and sore it becomes quite challenging. Blood tests need to be timed around anti-rejection meds so this means I go to the lab at 8am every Monday and Thursday. This also means that the lab is packed at 8am with other kidney recipients. Recipients who are further along than me and who help alleviate some of my concerns, like; is weight loss normal (I lost 15 pounds), and how long does the drain stay in for? Just knowing that these patients went through the same struggles as me is comforting. Seeing their improvement gives me hope. I’m extremely grateful for the transplant recipients who I met, and I look forward to providing the same advice to new transplant recipients when I have more experience under my belt.
Fifth, your diet changes drastically. You can no longer eat uncooked foods, this includes; sushi, oyster, kombucha, cold cuts, and red meat must be well done. I’ve become an expert on food temps; 165 degrees for chicken, 145 for salmon and 170 for red meat. In restaurants salmon is usually served at 120 degrees and 130 is medium rare for steaks. Well done, please.
Since January was a cold and wet month, Bridget and I have been eating a lot of homemade chicken soup - absolutely delicious. I’ve become proficient in making grilled cheese sandwiches, and we usually have chicken or salmon with rice and salad for dinner. Thankfully I never lost my appetite so I’ve been able to eat a lot to offset my weight loss. We’re eating very clean, and I absolutely love it.
Sixth, you feel helpless that you must rely on a caregiver. My caregiver is my wife Bridget. I couldn't do this without her. Being a caregiver is exhausting and extremely stressful. I feel terrible for putting my wife through this, but she is my rock. Her love, support and strength got me through this month. I am so grateful for her love.
Caregivers must make sure they take care of themselves too; taking breaks, going for a walk, or taking a long drive. Bridget is a runner and I’m happy that she continued running during these weeks. Nothing relieves stress better than a 10-mile run. Thankfully her stress, and my needs, decreased significantly after the first two weeks. Now in my third week I’m able to do most things on my own, and take a lot of the burden off Bridget.
Post-Transplant (Week 4)
It’s amazing what a difference a few weeks make - I feel quite good. My drain is still in, which is often sore, and my bladder stent is being removed next week, but I’m able to walk 2+ miles outside and take the stairs to our 4th floor apartment. I’m finally regaining some of the leg muscle that I lost, and I’m able to cook, vacuum and do laundry, which Bridget certainly likes.
I can’t lift more than ten pounds - that won’t change until three months post-op - and I definitely can't run or do yoga yet, but I’m moving in the right direction. My goal is to start running around March 1st, but that’s based on how my incision feels.
One of the hardest things post-op was laying back in bed. We take for granted how frequently we use our abdominal muscles to do simple things like lay in bed. And, since I have a drain sticking out of my abdomen, laying on my back is still my only option. Getting in and out of bed was the most painful part while in the hospital, but thankfully I never felt the need to take pain meds.
Now in week four I’m extremely comfortable taking my meds and have a great routine down. I can walk to doctor appointments and I’m relaxed with what I need to do each and every day. Things are looking good.
February 10, 2024
Today is the first of many anniversaries that I’ll be celebrating. February 10th is my one month transplant anniversary! I feel really good. For all those who are just getting started on their post-transplant lives please know that you will soon feel better, much better. I know the first few weeks are tough, but you will soon turn the tide. Stay strong.
To celebrate my first month I took a 4.5 mile walk along the Charles River on an unseasonably warm day in Boston. It felt great. I admired the view over the BU Bridge and walked past hundreds of runners training for the Boston Marathon. It felt invigorating to be outside, and I desperately wanted to run like everyone else. However, for that I must wait another month, and I’m okay with that. I’m just happy to be moving again. For now I will walk, and walk, and walk some more. Then in one month I’ll start training for my next goal - the B.A.A. 5K and the Brooklyn Half in May.
March 3, 2024
Today is the 305 Half-Marathon in Miami, Florida - a huge race for Team Stride for Stride. The 305 is our biggest race yet for our Miami team. We’ve had a team in Miami since 2019 with Kelin, Marcos, and Leo - all of whom continue to run with us today. The three of them ran the Miami Marathon, and Marcos flew up to a “cold Boston” to run the Boston Marathon, and Kelin ran the Berlin Marathon while six months pregnant. She is a legend.
However, our Miami team was always just a team of three. Then in December 2023 we added a dozen new runners, all of whom will be running their first race together at the 305. I’m very excited for our new runners to experience the joy of crossing the finish line, and I’m excited for new friendships to be made. The greatest accomplishment of Stride for Stride is all the friendships that have been created. Amazing people from 26 different countries and 26 different cultures who become fast friends - all thanks to the power of running and community.
The 305 is also a huge day for kidney donors - Jorge ran his first race (a half marathon!) less than two months after donating his kidney to me. Jorge is proof that kidney donors can lead a very active and athletic post-transplant life. When I asked Jorge how the race went he said: “I ran that half marathon yesterday and I don’t feel any different at all.” He then followed up with something absolutely beautiful; “...best of all is that I crossed the finish line jumping of happiness.”
For anyone considering donating a kidney, or worried about donating a kidney, just look at Jorge and know that you too can lead an even healthier life post-transplant. Jorge is an inspiration to all future kidney donors and to all human kindness.
March 6, 2024
Runners are an insane group of people - I’m fully aware of that. We take joy in running fifteen miles on a Saturday morning, just for the fun of it. For any runner who has been injured, and unable to run for a few months, you know how good it feels to lace up the shoes once again.
Today my drain was removed exactly eight weeks after my transplant. The drain removes excess fluid and blood that builds up in my abdomen during the healing process of my incision. It’s a plastic tube that comes out of my belly and connects to a bubble-like receptacle that pins to your shirt. It’s uncomfortable, sometimes painful, and you have to empty the bubble a few times a day.
I couldn’t even think about running until the drain was removed, and at times I didn’t think it would ever be removed. However, I’ve been walking, climbing stairs, and doing squats, to get my legs ready for running again.
Well, the day has come for me to lace up my shoes once again! Three days after my drain removal, two months after my kidney transplant, and four months after my last race, I ran again. I couldn't be happier. For me, running is a freedom that I crave. It’s a euphoria that not only keeps my body in shape, but it also keeps my mental health in shape. It also gets me out of the apartment for a couple of hours, and Bridget certainly enjoys that.
My first run was a 4.3 mile run along the Charles River. It felt incredible. It felt like being alive. I think I ran on pure adrenaline and pure joy. Joy to be running. Joy to have a second chance. And, joy for everyone who helped me get here today. Until today I wasn’t sure if I would be able to run the BAA 5K and Brooklyn Half Marathon. Now I know I can.
April 13, 2024
The B.A.A. 5K is two days before the Boston Marathon. The race has 10,000 runners who start from the Boston Common and run down Comm Ave to Kenmore Square and back to the Boston Common via Boylston Street. The most thrilling moment of this very fast race is running through the Boston Marathon Finish Line on Boylston Street.
I’ve run the Boston Marathon five times and most of those years I also ran the 5K on the Saturday before Marathon Monday. I can attest that it’s a thrill to cross the finish line whether you're running a 5K or the entire 26.2.
This year I will not be crossing the finish line after running the marathon. However, I will be running through the finish line while running the 5K, and I’m extremely excited about that. The B.A.A. 5K will be the first race that Jorge and I will run together since our kidney transplant, and our first race since the B.A.A. Half in November 2023.
I'm excited to run the 5K with Jorge and my Stride for Stride teammates. I’m excited to have a second chance at living life. And, I’m excited to show current and future kidney recipients that there is hope.
I want to give hope to kidney transplant recipients that you can live an active life post-transplant, including running a marathon - my hope is to run the NYC Marathon in November. I want to give comfort to individuals waiting for a kidney transplant and comfort to individuals scheduled to receive one. Having someone to connect with - someone who has gone through what you’re about to go through - is extremely comforting. It’s hope. It’s kindness. Anyone going through kidney disease is welcome to contact me via the information on the back cover of this book.
It’s important for potential donors to see Jorge running so soon after surgery. Many potential donors are worried that they can’t live an active life post transplant. Seeing a donor like Jorge running a 5K, a half-marathon and a marathon, gives confidence to those individuals on the fence about donating.
There is a terrific small non-profit organization called Kidney Donor Athletes that I absolutely love. KDA highlights kidney donors who are accomplishing great athletic feats; running a marathon, climbing a mountain, competing in a triathlon. What I love about KDA is how simple it is - like Stride for Stride - yet it makes a huge statement. They show that donors can! KDA gives potential donors reassurance that they can continue living an active lifestyle post-transplant. Jorge is proof of this.
November 3, 2024
On November 3rd, Jorge and I will run the NYC Marathon together - kidney donor and kidney recipient running 26.2 miles stride for stride - something that has rarely been done before.
I’ve scoured the internet trying to find another example of a donor and recipient running a marathon together, and I only found one pair in Israel. There are a tremendous amount of donors who ran a marathon, and there’s quite a few of recipients who ran 26.2 miles too. However, a donor running with his/her recipient is very rare.
I’m running the NYC Marathon to give hope to kidney disease patients who are waiting for a life-saving kidney donation. And, Jorge is running to show that kidney donors can lead very active lives after donating a kidney. Jorge is the reason I feel alive again.
Kindness is Your Superpower
I’m just starting to fully realize how incredible a kidney donation is - now that I’m feeling good. Very good, actually. I feel as good as I did before I was diagnosed. Jorge gave me life again. Donors truly save lives.
The kidneys keep your body in balance, and I was definitely off balance. My blood pressure soared to 170 the month before transplant - I was a healthy 115 to 120 before CKD and now I’m back to my original 115. On the day I started dialysis my creatinine level (a very important kidney indicator) was 13.6 - now I’m 1.5.
Now that I’m feeling good and fully experiencing the life-saving benefits of a kidney donation I truly believe that kindness is our superpower, and kidney donors are superheroes.
I believe if you show kindness to people that it will someday come back to you. It might not be immediate and it might even take years, but people always remember someone who has been kind to them. In my case, I created a non-profit out of kindness, and in return someone who I supported via that non-profit gave me the greatest gift of kindness.
You can’t buy a kidney, you have to rely on the kindness of others to save your life. If I lived a selfish and greedy life then it’s very possible that I wouldn’t have a new kidney today. And, I would most definitely be on dialysis. Being kind and empathetic to others meant that kindness would someday come back to me. In my case that act of kindness saved my life.
Anyone with two healthy kidneys has the power to save a life through an act of kindness - it’s our superpower. It’s an amazing power to possess. More than 90,000 people in the United States are currently waiting for a kidney transplant. You have the power to lower that number. You have the power to become a superhero and save a life. Please consider becoming a superhero to someone you know or someone on dialysis.
Start by educating yourself about kidney disease and kidney donation - the following page has links to info about organ donation. Also, most major U.S. medical centers have a transplant center where you can learn about kidney donations in your city. Just Google the “hospital name” plus “transplant center” to get started. You can donate to someone you know, or make an altruistic donation to an anonymous recipient.
And, if you know a kidney donor then please talk to him/her about their experience. Kidney donors are the best advocates for becoming a kidney donor. The more familiar you are with a donor, the more likely you’ll be comfortable becoming a donor yourself. Your kindness is not only a life-saving gift for the recipient, but it’s also a life-changing experience for you, the donor.
The average wait time for a deceased donor is three to five years. As a living donor you have the power within you to shorten the wait time for one of those 90,000 people. You have the power within you to become a superhero.
Resources
For additional information about becoming a living kidney donor please visit the National Kidney Foundation at Kidney.org
To learn more about BIDMC Transplant Institute visit; bidmc.org/centers-and-departments/transplant-institute
To find a transplant center in your city/state visit OPTN at: https://optn.transplant.hrsa.gov/about/search-membership/
Visit UNOS.org (United Network for Organ Sharing) to register as an organ donor.
Visit Kidney Donor Athletes at KidneyDonorAthlete.org
Donate Life at DonateLife.net
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