As I sit and write, it’s been five years in the chair—five years of waiting. Three times a week, on Mondays, Wednesdays, and Fridays, I wake up while it’s still dark outside to head to dialysis, my life-saving treatment. As my blood is cleaned and fluid is removed from my body, I sit and ponder: Will I ever get the chance to live a full whole life?
I’ve learned, with the help of my family and friends, that I must keep advocating for myself while also learning patience. Waiting comes with many emotions: hopelessness, depression, and frustration, and these are very real. I’ve given myself permission to feel them and own them.
I have worked tirelessly over the last two years, researching and studying different approaches to hopefully find myself a new kidney. I’ve learned that there are transplant centers that specialize in helping patients who struggle to get a kidney due to high antibodies. These antibodies can develop if you’ve had a previous organ transplant, a blood transfusion, or, for women, a past pregnancy.
Some centers try to lower antibodies using medicines or treatments such as plasmapheresis or IVIG. IVIG involves giving patients a concentrated dose of antibodies collected from donated blood from thousands of healthy people, and it remains the current standard of care. Other centers are exploring newer approaches, such as Belatacept and additional drugs. There is also discussion about xenotransplantation of organs or tissue from one species to another. Right now, NYU Langone and Massachusetts General Hospital are beginning early human trials.
In February of this year, I had the opportunity to speak with the team at NYU Langone. After some testing, I was able to get listed and participate in a clinical trial aimed at lowering my antibodies. Although it didn’t work for me, the experience was eye-opening and gave me valuable insight into how clinical trials operate. It also reinforced how important it is for patients’ voices to be heard in these studies.
For the trial, I worked with NYU for three months, traveling once a month from June 2024 through August 2024. Each time, I would fly to New York, receive the infusion, stay for 24 hours of observation, and then return home. After those three months, I followed up with local bloodwork until the study concluded in January 2025. In February, I had the opportunity to go back to NYU and meet with one of their teams to discuss the potential of a pig kidney. As of this writing, I am still waiting.
As I’ve learned from the great children’s book writer Mo Willems in his Elephant and Piggie book, Waiting Is Not Easy! I’ve had to remind myself to keep pressing on and look for new opportunities while waiting for a response from the NYU team. My fiancée, Tamiera, did some research online and discovered that the University of Chicago has a unique clinical trial using Belatacept and other drugs. I flew to Chicago, went through the process of getting listed, and met with a doctor who is willing to work with me. I am now wait-listed with them as well and continue to wait for insurance approval for the Belatacept treatment.
Sometimes waiting has meant I haven’t been the most available parent. I’ve missed my son Zander’s soccer games and practices, and my daughter Abby’s band and jazz concerts. That feels awful. At times, I’ve even felt like I’ve “wasted” my time waiting instead of being fully present in the here and now.
Recently, my family and I started a nightly meditation ritual using an app called The Way. It’s been teaching me how to be present in my body and physical space. It isn’t easy; anxiety still creeps in, and I worry. But I’ve learned that anxiety is normal. The key is not to stay stuck in it, but to notice it, then bring myself back to the present through something tangible around me.
As I continue to wait for a second kidney transplant, I want to remind others: you are not alone on this journey. While you wait for your call, look for ways to connect, share a meal with a friend, call someone, or send a kind message. Connection can make the waiting lighter.
Here at TransplantLyfe, we have a wonderful community of patients, caregivers, healthcare providers, and physicians, all here to support one another. I’m learning to wait not just to live my best life, but to live a life worth living—right here, right now.
Thanks for reading. Visit us at transplantlyfe.com to learn more from our community.
In Lyfe,
Alex
A chill is in the air and the pumpkins have taken over, it’s officially spooky season. As with many holidays that are centered on food, people can find Halloween hard to navigate especially if they follow special diets including post-organ transplant. If this is you, you might be asking yourself, or the internet, questions like, “What can someone with a transplant feel mostly good about eating during this time of year that won’t wreck my phosphorous and glucose levels?” or, “should I be eating dark chocolate, organic candy, or maybe lollipops to be healthier?”
You are not alone in your concern and confusion. Read on for tips to help get you through the maze of candy corn and chocolate bars to help you come out on the other side feeling good about your health and yourself.
Tip #1: Celebrate the Season
You’re not wrong if the first thing you think about during Halloween season is candy, and yet there are so many other ways to participate in the holiday beyond sweet treats. It may be helpful to write out a list of different activities to enjoy. For example:
Visiting a pumpkin patch
Pumpkin painting or carving
Putting up decorations
Dressing up in costumes
Visiting a haunted house
Organizing or participating in a Trunk or Treat for your community
Walking through crunchy leaves
Lighting a candle and cozying up with a good book or spooky movie
What would you add to the list?
Focusing on other aspects of the holiday may soften your concerns regarding food.
Tip #2: Don’t Get Tricked by Twisty Marketing
Food marketing is designed to make you feel like you must have a certain food, and you must have a lot of it, and you must have it right now. Otherwise, you’re going to miss out on a seasonal flavor, or you’re not enjoying the holiday the right way, and on and on.
The fact is, you need to choose what’s right for you. Asking yourself the following questions can help:
Do you regularly experience GI issues?
If so, you may want to avoid sweets marketed as “low in sugar” or “sugar-free” because that often means they are using sugar alcohols. Many people experience diarrhea when eating sugar alcohols. If you already have GI issues, these treats may make your issues worse.
Are you trying to manage phosphate levels?
It’s true that chocolate treats can be a source of dietary phosphate and hard candies like lollipops are not. If chocolate treats are your absolute favorite, that does not mean you need to say no, it means you need to think about portion control. Enjoying 1-2 fun-size candies a day will help minimize the impact on phosphate levels.
Bonus tip – chocolate candy can be frozen to preserve the tastiness over time. Seal the candy in an airtight container and only defrost 1-2 pieces at a time.
Are you trying to manage blood sugar levels?
All candy – organic, milk and dark chocolate, etc. – will have an impact on blood sugar levels unless they are sugar-free. Just like with phosphate management, you can reduce the rise in blood sugar by portioning out your candy. It may be even easier during Halloween because most candies are already packaged into small servings.
Regular physical activity, including walks, can also help your body use the sugar and other carbohydrates you eat throughout the day in a healthy way. This is a great time of year to be intentional about regular activity!
Do you even like the sweets being offered?
Sometimes we choose to eat foods we don’t even really like because of social pressure, seasonal scarcity, tradition, or for emotion management. When we take time out to ask ourselves if we’re even enjoying the experience, it can help us make healthier decisions.
Tip #3: Invite All Your Senses to the Party
Not to get too scientific, but research has shown that eating sweets in a mindful way, taking time to use all your sense to enjoy the treat, may increase your pleasure and reduce feelings of guilt.
The advice is to go all in when enjoying candy. That does not mean eating an entire bag of candy in one sitting. All in means really taking the time to enjoy and appreciate the experience of the treat using all five sense – hearing, seeing, touching, smelling, tasting.
Long after the holiday is past, we continue to find little ghosts of Halloween haunting our house in the form of candy that hangs around too long. When we have candy lying around it might make us feel like we must eat the candy just to finish it off and not be wasteful. But there are alternatives to consider:
Donate – local food banks, homeless centers, dentists’ office, military troops, and more may be willing to take unwanted candy off your hands
Save it for later – storing candy in a cool, dry environment can extend it’s shelf life meaning the candy can be used for other holidays. Think stocking stuffers for Christmas, Valentine’s Day gifts, and Easter baskets.
Share it – take it to work or other in-person event so others can share in the enjoyment
Make arts and crafts – make a candy mosaic with your kids or grandkids. Or save it for gingerbread house decorations.
Throw it away – if you can’t access an alternative option for any reason, it’s okay to just throw the candy away to remove it from your environment.
This Halloween, you’re invited to try out any of the tips above and experience the holiday in a new way, one that focuses on the joy instead of the guilt, stress, and shame. As you play around with different tips, share your experience with your TransplantLyfe community. Happy Halloween!
“My name is Caroline and I have a heart transplant.” It was my answer to the question my professor had asked- “State your name and one cool fact about yourself for the class”. It was the first time I sat in a college classroom in over three years. I could feel my cheeks flushing pink when it came time for me to answer.
I am used to making speeches for crowds of adults, for other disabled people, and regularly speaking to at least one healthcare professional a week. But when I went back to college as someone who had beaten cancer with a port still in my chest, as a heart transplant recipient, and as a disabled person in a colorful wheelchair, I had no idea how new people my own age would receive me. I remember telling myself before the first day of school that I would not bring up all of the “complicated” stuff until people got to know me. I wanted to have an opportunity for people to see me, and not just see what I’ve been through.
There are so many other interesting things about myself, but I found myself saying “I have a heart transplant” as my “cool fact”. It was a split-second decision, I’ll admit that. I didn’t know why I chose that until later when it hit me- if I was going to truly start fresh, I didn’t want to hide a single part of me. No feeding into that ‘be the cool mysterious girl movie trope’ type (because what does that even mean). I am a very out there person; I find it near impossible to shrink to hide who I truly am. Though when I looked around the room after my statement, I saw the pairs of students sitting together, and in realizing that I sat alone, I worried that I had made a mistake.
At the college I attend, we have an accessibility counselor, who told me a few weeks into school about a group of students who were trying to start a Disabled Students
Union on campus. I went to the first meeting as Secretary of the union, again not knowing how I would be received. I was greeted by the most welcoming group of people who were so unashamed of being themselves. I immediately felt safe.
We all had such different disabilities, but we all bonded over commonalities like medications we had been on and our experiences of our lives being so intertwined with hospital stays and doctors. We ranted over viewpoints and labels we hated being imposed on us. They became the first college friends I made in nearly four years. I left each meeting feeling closer and closer to the person I always wanted to be after my transplant- shameless and loudly proud.
Over time, I became more involved with things like the Student Government and the Student Diversity Council. Each time I spoke in front of my peers, my cheeks got less pink and my voice shook less. My outfits got more and more colorful, I wore my blue heart-shaped glasses to class often, and my confidence in not only my transplant life soared, but also within my own voice. I wasn’t so afraid anymore. I noticed more of my peers would complement my wheelchair wheel colors that I would change out weekly, and it became easier to connect with strangers. By the time April rolled around, I decided I wanted to do something kind of bold.
April is National Donate Life Month, and I wanted to bring it to my campus. I organized a card drive, where cards would be decorated by students and sent to a hospital for transplant patients and donor families. I also decided it was time to put my voice to use. I enlisted the help of a close friend who has a heart transplant and a faculty member (who later also became a friend) that had donated a kidney to a stranger, to speak in front of students with me. To my surprise, students showed up with genuine curiosity; the event was a success. I felt so incredibly proud.
When I went back to school, I feared I would not make a single friend. That no one would care about transplant life. I was so thankful to find that people did care. I was not only accepted by my peers with open arms, but I made some of the best friends I
could ever ask for. My new friends make me transplant-friendly ice cubes in cute little shapes and always check my diet requirements before giving me food they made. It’s so simple, but it means more to me than they’ll ever know. My lifelong protector and best friend, Cassidy, would tell you that she was right- she knew the right people would find me. I even found some self-acceptance along the way. Next year, I will serve as the President of the Disabled Students Union, being voted in by my peers. I have so many plans on how to bring organ donation and disability awareness onto campus, knowing there are wonderful people who will care about it.
The entire experience of going back to college as a transplant recipient has taught me a few things. What I’ve been through is such a big part of me and there’s no shame in that. Doing it scared, even if your cheeks flush and your voice shakes, is something to be proud of. That self-acceptance is right around the corner if you stop shrinking yourself to fit a self-imposed limitation. But the biggest lesson of all? If you live in truth, if you live as who you truly are, the right people and the right path will always find you.
My name is Emmitt Henderson III, and my journey with Lupus has been anything but ordinary. Diagnosed over three decades ago, I’ve faced countless battles, but none more life-altering than the fight against kidney failure, caused by Lupus Nephritis, that has changed the course of my life. After enduring multiple hospitalizations, organ failures, dialysis treatments, and near-death experiences, I found myself on a mission, not just for healing, but for hope. That hope came in the form of searching for a living kidney donor.
Out of this complicated journey, I created Male Lupus Warriors Corp, an organization dedicated to empowering men living with lupus and chronic illness. I wanted to create a space that wasn’t available for me during my struggles. Through my platform, I’ve had the honor of advocating nationwide speaking at conferences, attending policy events like Rare Kidney on the Hill Day, and educating communities about organ donation and health equity. My advocacy has earned me awards and recognition, but the real reward is knowing that my story is helping others rise through their health struggles.
I’ve traveled across and outside the country to share my truth, connect with fellow warriors, and amplify the voices of those often overlooked. And now, I’m proud to say I’m also an author, using storytelling to leave a legacy of strength and transformation.
I didn’t know I had a story till I told my story and this is my space to reflect, educate, and inspire. This is how I turn my pain into power.
When I joined TransplantLyfe, I expected to find information and maybe a few people who understood what I’d been through. What I didn’t expect to find was Jeanmarie, a best friend, a soul sister, and living proof that hope and strength don’t just survive – they thrive when shared.
We connected through our transplant journeys, each of us carrying a story marked by loss, healing, and the fight to keep going. But what truly bonded us was something deeper: a shared passion for advocacy, a fierce desire to turn pain into purpose, and the comfort of knowing that someone else just gets it.
From late-night check-ins to spontaneous New York City adventures, our friendship became its own kind of medicine. One of my favorite memories is the day we took a bike tour through Central Park. With the wind in our faces and laughter echoing between the trees, it felt like reclaiming life on our own terms. It was a celebration of every moment we’ve fought to live.
Whether we were shopping at Tiffany’s or simply breathing in the magic of the city, we weren’t just passing time; we were honoring it. We were honoring every heartbeat, every second chance, and every moment our transplants gave back to us.
Jeanmarie’s strength inspires me daily. Even on her hardest days, she lifts others up. Her voice fights for the unheard, and her joy reminds me that light still lives in the hard places. She’s the friend who remembers the dates that matter, who checks in without being asked, and who makes you feel seen in a world that sometimes overlooks transplant warriors.
Our friendship is a reminder that healing doesn’t always come through medicine or milestones. Sometimes, it shows up in a person who walks beside you, believes in your tomorrow, and never lets you forget that your story still matters.
So if you’ve ever wondered what hope and strength look like… It’s not just from survival, but from a connection.
By: LaVise McCray
by Karin Hehenberger
I have lived three lives – at least.
My first was as a child – never worried about the future and only focusing on the now. I fought hard in sports and in school, but I was not wanting for much more than that. I did not have an inkling of how lucky I was. My parents tell me I was always smiling and always on the move.
Then came Type 1 Diabetes. Like a truck, it wheeled over me and I felt damaged and alone. I managed it conservatively and, while doing so, ruined the very part of me that was happy and free. T1D felt like a prison.
One day I just said “stop”. I started living freely and irreverently. Nothing could stop me. I was young, well-educated and out to conquer the world. Of course, this lifestyle was not sustainable. The complications hit me worse than the diabetes had as a teenager and now I was not just damaged through my disease but also through my behavior.
Transplantation saved my life three times but my daughter, Liv, makes my life worth living each day. Without her, I would not have been able to return to feelings of happiness and freedom from paranoia, control and thoughts of giving up.
Today, on Independence Day, I celebrate freedom, in all shapes and forms. It might be a day without pain, a walk after not being able to, advocacy to push for change for more than just yourself, courage to share your thoughts and dreams, or simply smiling in the morning when waking up.
The Most Common Cancer in Immune-Suppressed Individuals
In 2024, more than 48,000 organ transplants were performed in the United States. Although solid organ transplant (SOT) is a life-saving treatment, unfortunately, recipients have elevated risk for many cancer types due to the medications transplant recipients take to avoid rejection of their new organ.
The highest increase in cancer rates for SOTs are most frequently associated with skin cancers. The immunosuppression medications (Tacrolimus, Mycophenolate, Cyclosporine, Azathioprine and others) impair the capacity of the immune system to repair UV-damaged cells, allowing these damaged cells to develop into cancers.
The four main types of skin cancer in organ recipients are:
Squamous Cell Carcinoma (SCC): 100x higher risk
Merkel Cell Carcinoma (MCC): 24x higher risk
Basal Cell Carcinoma (BCC): 16x higher risk
Melanoma: 2x higher risk
Monitoring
Symptoms of skin cancer include new bumps or patches on the skin, or changes in the size, shape or color of skin growths. Frequent self-exams and (full body) screening examinations performed by a dermatologist are recommended for all SOTs. Generally speaking, an annual exam is sufficient. However, if any SCC is suspected/discovered during an exam, more frequent checks by a transplant dermatologist may make more sense (3/6/9-month intervals).
When performing self-exams, all skin should be checked for any changes in size, shape or color of skin growths or the development of new skin spots. This includes the scalp, ears (including on the insides), palms of hands, soles of feet, between toes, genital area and the area between the buttocks. Skin cancers may even manifest inside the eyes. Mirrors, magnifying glasses and even taking photographs can help to identify changes in skin over time.
Treatment
Most skin cancer is treatable if it’s caught early. Treatments include Mohs surgery, cryotherapy, chemotherapy and radiation.
The most common treatment for SCC is having the Mohs procedure/surgery performed. This procedure involves removal of thin layers of cancerous skin, one at a time. Each layer is examined under a microscope until normal tissue is found. Sometimes multiple sessions may be necessary. Unfortunately, the removal of tissue often leads to deficits that might require reconstructive surgery. Non-cancerous spots/markings that are identified may be “frozen” (cryotherapy) to destroy the affected cells. Early detection and treatment are critical for managing skin cancer, post-transplant.
Prevention
In most cases, skin cancer can be prevented. The best way to protect ourselves to avoid too much sunlight and sunburns. It is very important to implement effective sun protection strategies which most certainly should be prioritized. Some strategies include using broad-spectrum sunscreen with an SPF of 30 or higher, wearing protective clothing and sunglasses, avoiding the sun during peak hours, and steering clear of tanning beds. However, much of the damage detected in an adult has been caused by sun exposure as a child, which is the reason why skin cancers in non-transplant recipients also occur to a higher extent in the elderly.
Transplant recipients wear a badge of honor everyday of their lives and are grateful to their organ donors and donor families for making the Gift of Life available to them. Prevention and close monitoring are key to avoid adding the term “cancer survivor” to the list of medical conditions.
Two years ago, I wasn’t sure what the future would hold. Sitting upright felt like running a marathon. I relied on a wheelchair to get around, and even the simplest tasks left me exhausted. Yet amid that uncertainty, one thing remained: hope. Hope is made possible by the life-changing gift of organ donation.
Recently, I completed my very first 5K walk.
That moment wasn’t just about miles. It was about the meaning behind each step. Every stride I took was a powerful symbol of resilience, gratitude, and transformation.
My transplant journey has been anything but easy. It’s been filled with moments of fear, physical setbacks, and emotional weight. There were days I wasn’t sure how I’d keep going. But I chose to rise anyway. With the unwavering support of my medical team, my family, and the transplant community, I kept moving forward—one step at a time.
Walking that 5K wasn’t just a personal milestone—it was a tribute. A tribute to my donor, whose selfless gift gave me a second chance at life. A tribute to those still waiting for their miracle. And a message to the world that life after transplant is not just possible—it’s powerful.
To anyone facing a health battle of their own: don’t give up. Don’t count yourself out. Your body is capable of incredible things. Your spirit, even more so. With faith, determination, and a circle of support, healing can happen. I am walking and living proof of it.
My journey is far from over, but that day, I walked with strength, with purpose, and with deep, unshakable gratitude.
By: LaVise McCray
In early May, I celebrated 11 years with my living donor kidney. I received the Gift of Life courtesy of my close friend, Matthew, in 2014. I’m often asked how he came to give me a second chance at life and the truth is I owe it all to an electronics retail job we shared after college. We started as strangers but spent 40+ hour weeks together, endured stressful holiday sales, and forged a bond that only working in retail can provide.
As I reflect on the time since my surgery, I’m reminded of the ups and downs and all the major and miniscule moments along the way. I feel overly compelled to write a note to the version of Kevin who awoke in a recovery room with a freshly-transplanted kidney on May 6, 2014. I want to let him know what to expect and, most importantly, that things are going to be different, but OK!
The nurse has been calling your name for a few seconds, but with the general anesthesia wearing off and your hearing loss, it’s going to take a few extra moments for you to wake up and snap to attention. You’ll immediately recite your name and date of birth, before the nurse even gets the chance to ask you, and she’ll laugh. Your mind will immediately think of Matthew and you’ll learn he’s doing well in recovery. Your new kidney is making urine right away. Lots of it.
A few days later, back at home, you’ll hate walking up steps but the pain will subside in time. You’ll endure a temporary bout of insomnia but that’ll pass. A weekly pill organizer will become a part of your life as much as brushing your teeth.
You’ll be scared to be around large crowds, so you’ll mask in a society that hasn’t yet endured a devastating global pandemic. One time you won’t have a mask on and a small child will sneeze directly in your face at a pharmacy. You’ll be emotionally shaken but fine.
You’ll be scared to see the results of routine lab work…actually you’ll stay scared over the years. Sorry about that one. But you’ll trust your care team and listen to your body and that’s a solid plan. Eventually, you’ll become more accustomed to falling asleep without plugging into a dialysis cycler than the way it used to be for you.
You’ll get sick with random illnesses, as folks do, and require hospitalization. You’ll catch a virus that will cause the world to go on pause.
Connecting with fellow transplant patients will change your outlook on everything. One day you’ll talk less about transplant with these individuals and more about your favorite new TV shows. You’ll wish them Happy Transplantiversary every year and celebrate the birth of their children.
Working a typical 9-5 won’t be for you, so you’ll fall into renal patient advocacy and meet researchers, and nephrologists, and driven individuals who want to make life better for patients like you. You’ll travel all over the country and be inspired by too many folks to count.
You’ll go on vacation and swim with tropical fish and that moment of tranquility will be ingrained in your brain forever.
Your transplant-centric milestones and gratitude will only grow over time, as will your friendship with your donor and friend.
One day, you’ll write a blog about this long, strange trip and won’t be able to imagine life without it.
By Taryn Servold
Every April, we observe Donate Life Month, a national campaign to raise awareness about organ, eye, and tissue donation. It’s a time to honor the donors who gave the gift of life and to encourage others to consider registering as donors.
For me, Donate Life Month hits home. I’m living proof of what’s possible when someone chooses to give — even in the midst of unthinkable loss.
Organ Donation: The Facts That Matter
Organ donation often gets overlooked in everyday conversations, but the need is real — and urgent:
There are over 100,000 people waiting for a transplant in the U.S., and around 85% of them need a kidney.
Every 8 minutes, another person is added to the national transplant waiting list.
17 people die each day waiting for an organ that never comes.
One organ donor can save up to 8 lives — and improve the lives of 75 or more through eye and tissue donation.
Most people can be donors, regardless of age or medical history. Each case is reviewed individually at the time of death.
Living donors can also save lives — particularly when it comes to kidney and partial liver transplants.
Despite all this, only about 60% of Americans are registered as organ donors, and the demand far exceeds the supply.
My Life After August 14, 2022
Since my transplant, everything has changed. I no longer need insulin. My kidney function is strong. I feel better than I ever imagined possible — not just physically, but mentally and emotionally, too.
Before the surgery, every day was filled with uncertainty. Now, I can plan. I can work. I can travel. I can enjoy life without constantly managing blood sugar and anticipating the fatigue of kidney failure.
And most importantly, I carry the legacy of my donor with me every single day. Their decision gave me a second chance, and not a day goes by that I don’t think of them — and their family — with the deepest gratitude.
How You Can Make a Difference
If you’ve ever wondered about becoming a donor, here’s how you can help:
Share your decision with your family. In a time of loss, knowing your wishes can bring peace and clarity to your loved ones.
Become a living donor. If you’re healthy, you could be the match someone desperately needs — today.
Spread awareness, especially during April. Wear blue and green on April 19th for National Donate Life Blue & Green Day, and share your story or support online.
Final Thoughts
It’s easy to take life for granted — until you’re faced with losing it. I got my life back on August 14, 2022, thanks to someone I will never meet but will forever honor. That person — that donor — gave me more than just organs. They gave me freedom. They gave me time. They gave me tomorrows.”
