April is Donate Life Month, and it also marks the anniversary of my own Gift of Life on April 20, 2015. Throughout the month, communities come together to honor organ donors whose generosity makes second chances possible. It is a time to reflect on the incredible impact of these donor heroes and to express deep gratitude to their families, as well as the medical teams, hospital staff, and loved ones who support transplant recipients. Truly, it takes far more than a village to make organ donation and transplantation possible. 

A few days ago, I experienced something incredibly unique and deeply emotional that I feel compelled to share. I had the honor of attending an Honor Walk at a hospital, held at the request of a family to recognize their loved one who had passed. For privacy, I will refer to her as “T.” She was someone I knew well, a true transplant warrior who had received the gift of a heart and lungs a few years ago. Sadly, she had recently been hospitalized with an infection that could not be managed. 

Her family and close friends, including myself and a few fellow transplant recipients, gathered in her room around her bed. Prayers were shared, memories were spoken, and we each had the chance to say our goodbyes. T had made the decision to be an organ donor and had clearly communicated those wishes to her family. Because of that, and with their full support, members of the Organ Procurement Organization (OPO) were present to help coordinate the process and provide support during such a difficult time. 

It was finally time. The hospital bed was prepared for transport to the operating room. Moments earlier, an announcement had been made over the hospital’s PA system, inviting all available staff to assemble outside T’s room for the Honor Walk. 

The bed, surrounded by family, was gently pushed down a long corridor. On both sides of the hallway, people stood shoulder to shoulder, doctors, nurses, technicians, cleaning crews, security personnel, and loved ones. We were all there to honor and say goodbye to a potential organ donor, someone whose final act could give others the chance to live. As we moved down the hallway, music played softly from a Bluetooth speaker, Stevie Wonder’s “Isn’t She Lovely.” 

Once inside the operating room, a clinical team from the OPO became involved in the recovery of any viable organs after it was confirmed that she had passed. 

On our way out of the hospital, we saw an SUV from the OPO ready to transport recovered organs to the next recipient. 

The following day, we learned that T’s liver had been recovered and transported to a hospital about 300 miles away in New York. I remember visiting her a few years ago while she was waiting for her heart and lungs. She even joined my virtual support group from her hospital room. After a long wait, she finally received “the call” and was transplanted. 

Then, just the other day, someone else received “the call” for a liver that would allow them to live, all because T had said “Yes” to organ, eye, and tissue donation. That is what I call the full circle of life. While T may not be here physically, she lives on. Truly, 

Organ Donation + Transplantation = Miracles 💯. 

Experiences like this are why awareness and education during Donate Life Month matter so much. 

During April, many transplant centers and hospitals host Flag Raising Ceremonies to honor and remember organ donors. These brief ceremonies bring together hospital leadership and OPO teams to reflect, express gratitude, and celebrate recipients whose lives have been saved. Often, recipients, living donors, and donor families share parts of their journey. 

This April, I have been fortunate to speak at over 10 of these events. I share a small part of my story, focusing on gratitude and what transplant has meant to me over the past 11 years, while also highlighting the ongoing need for organ donation. 

I hope to inspire those on their own transplant journeys and encourage everyone to consider organ donation. You can become a Donate Life Ambassador through your local Organ Procurement Organization (OPO) and you can find your local OPO by visiting “Find your OPO.” 

My best wishes to all those who are waiting for a life-saving transplant. Your perfect gifts will become available at the right time. In the meantime, please try to stay positive and take care of yourselves so you can be in the best possible mental and physical state, allowing for a smoother transplant journey and healing with the best outcomes. 

To my fellow recipients, let us continue to stay compliant, look after ourselves, and take care of the precious gifts of life we have been fortunate to receive, while living our lives as fully as possible. 

To those who are not yet registered as organ, eye, and tissue donors, I encourage you to consider doing so. At the very least, have a conversation with your loved ones and make your wishes known. 

To register as an organ, eye, and tissue donor, please visit: https://www.organdonor.gov/sign-up/how 

The proposed Living Donor Protection Act (LDPA) of 2025 (S.1552 / H.R.4583)  is bipartisan federal legislation introduced in 2025 to protect living organ donors. Protections like the LDPA are essential to helping reduce the national transplant waiting list, which currently includes more than 100,000 individuals. Such legislation may encourage more people to consider becoming living organ donors for those in need of life-saving kidney and liver transplants. 

Key Aspects of This Legislation 

Insurance Protections: 
Once enacted, insurance companies would be prohibited from discriminating against living organ donors—this includes denying coverage, limiting coverage, or charging higher premiums simply because someone is a donor. 

Job Security: 
When the law is (hopefully) in effect, recovery from organ donation surgery would be covered under the Family and Medical Leave Act (FMLA). This means donors will be able to take unpaid leave while recovering, with job protection to ensure they can return to work. 

Status and Next Steps 
Current (Federal*) Status:  
on February 26, 2026, the LDPA advanced through the Senate Committee on Health, Education, Labor, and Pensions (HELP), moving it one step closer to becoming federal law. 

On March 11, 2026, the LDPA was reported to the full Senate. 

Next, the legislation will be debated on the Senate floor, followed by a final vote after any amendments are addressed. If approved by the full Senate, it must be reconciled with the House version before being sent to the President, who will either sign it into law or veto it. 

Call to Action 
We can all reach out to our representatives to ensure that LPDA becomes law. Our voices matter. Every day, people die while waiting for a life-saving transplant. 

*There are also state-level laws that provide protections for living organ donors. 

When I was 18 years old, I started having strange symptoms: body aches that never went away, a really hard time breathing, and a heart that would skip beats or feel like it was pounding so hard that it would move my entire body. After several misdiagnoses, I was finally diagnosed with end-stage heart failure from a rare genetic condition called left ventricular noncompaction cardiomyopathy. I needed emergency surgery that night to place an Impella to help my heart pump, but it failed. I was placed on another form of life support called ECMO, which would circulate my blood for me.

I was placed on the transplant list as Status 1A to try to get a heart for me as soon as possible. In the two weeks of waiting for my transplant, I was placed on a ventilator because my lungs were filling with fluid. I was dying, and I was dying quickly. I had also sustained a spinal stroke while waiting for my transplant. Finally, I received my heart on March 21, 2022. I remember being rolled into the OR, barely conscious, and being asked, “Do you have any questions before we start?” I asked the transplant surgeon if I was going to die. I don’t remember his answer, only his calm kindness.

When I was a kid, I was kind of shy, more of a quiet observer type. It wasn’t that I never had anything to say; it was that I was afraid of how I would be perceived. I never really knew what I should say. I kept my words safe inside of me for most of my life. In the two days after my transplant surgery, I would not speak or write notes. The words were once again stuck inside of me, just as they were when I was a kid. I knew I wanted to say something; nothing could encapsulate what I was thinking.

In the beginning months after my transplant, everyone told me I was lucky. But I was stuck at this strange intersection of not knowing the magnitude of what I survived, not knowing what it meant to be lucky, being so immensely thankful to be alive, and questioning why everything I thought I had planned for my life had been turned upside down.

After being intubated for a while, my voice sounded foreign to me. I have never been a good or strong singer, but my hum became breathless.

My laugh had always been loud and sometimes obnoxious, but when it fell silent, I quickly realized I missed it more than anything. I had a new body that I didn’t recognize and a new rough idea of a life plan that did not yet feel like my own. There was one night, soon after coming home from rehab, when I was taking my vast number of nightly pills, and I broke down crying.

My family looked at me like I was crazy at first; I think they were trying to understand how the feeling of luckiness could be overpowered by another, more complicated feeling—grief. As someone who always loved the freedom of no structure, I felt so exhausted by having to follow this new, strict routine.

I had this deep feeling in my soul that every cell of my being had changed—that I would never walk again, that I would never just go back to who I was before. It posed a new question: What if I was always meant to end up this way? What if I was meant to have a new laugh and voice, a new perspective, a new body, a new future?

What if this would teach me how to say all of the things I feared saying for my entire life? What if it is actually better that I cannot go back to who I was before? I did not want it all to mean that what happened to me was cruel or unfair. I desperately wanted to shake hands with my grief, call it a truce, and somehow live in peace with its shadow so that it would not dim my life forever.

I began unpacking everything that transpired leading up to my transplant. I wanted to take it all apart piece by piece to inspect it, to try to understand the luckiness that found me. My sister had taken detailed notes throughout my arrival at the hospital, all the way until the week after my transplant surgery. She and my mother saved all the notes I wrote while on a ventilator, when my writing was barely legible at times. I vividly remember being frustrated while writing each one because the words never came out the way I wanted.

From all the pain and sleep medications I was on, I didn’t know how to write normally—some letters and words were so tiny or squished together that they made no sense. I read them so many times that the memories etched themselves into me. Reading that your family was told to make death plans for you if a heart didn’t rescue you in a few days is something you can never forget.

The memories of the ICU tug at me sometimes, and I often can’t tell if it is from the fear that some imaginary clock is ticking against me or if it is because I feel I haven’t thanked that room enough. It can freeze me for moments in time, holding me hostage. I wake in the middle of the night after having dreams of memories I try to suppress in my waking life—the ones that are too staggering to face.

Though there is something else I read in my sister’s notes, which she wrote the day after my transplant surgery, that has not left me either: “I’m sitting in the chair in the sky lounge and don’t have to sit and wonder if Carrots will get a heart or not.” If for no grander reason than living another day where my sister calls me Carrots, living another year where my mother squeezes my hand during quarterly bloodwork tests, or laughing my new laugh with my best friends, I think it is still worth it.

As I write this, the geese are loudly migrating over the Lehigh Valley in Pennsylvania, where I live. I wonder if they are flying back to places they feel they did not thank enough—if they are driven by their memories too. I think about the woman who saved my life. I tell everyone about her, even strangers. I tell them how she is the ink of my name when I dot the “i” in Caroline with a heart. How I carry her like a second soul. How she finds me in every poem I write at 2 a.m. I wonder a lot about my lucky Penny—if her spirit returns to those thankful places, to the creek or grass barefoot.

If she could be out there on the clouds the geese are flying under, arms outstretched in fields of cotton sky. If she had a clear view of the last full Blood Moon in March 2025 and thought that it looked like the magnificent heart, she gifted me.

Most days, I wake up with the sun shining in my eyes, and occasionally I wish my blinds would close tighter, but I am reminded of a random quote I read online: “I opened two gifts this morning; they were my eyes.” I believe the third gift is my heart, beating with me, no matter the fear that creeps in or the memories that feel like a confusing illusion. I say that I am lucky, and I feel that I am.

Caregiving.  Most of the time, this word conjures images of grown children caring for aging parents, or seniors caring for seniors. Sometimes it brings to mind younger people caring for a loved one with cancer. One image most people don’t consider is caregivers for chronic conditions. We are unsung heroes.

It comes with mixed feelings. Our loved ones are dying… but slowly. Some can even be restored to “normal” with a transplant, if everything goes well. Others move through stages, gradual or abrupt, that require constant adjustment and flexibility. The traditional definition of a caregiver doesn’t always apply. In conversations, we may feel guilty about identifying as caregivers. But our role is long, arduous, and often misunderstood.

We are caregivers.

We navigate care. We become armchair experts, hyper-attuned to any nuanced change in our loved one. We move through endless lists of specialists. We get listed for transplant at this hospital, or that hospital — sometimes five different ones. We become disciplined and relentless in medication management, movement, emotional regulation, and advocacy. We live constantly on the razor’s edge between compassion and militancy to keep our person alive and thriving.

We are caregivers.

We need support, love, inclusion, respite, and care of ourselves. We deserve recognition for the work we do — even if we don’t seek it. We deserve community and safe spaces to connect with others, to talk or not talk about our experiences, and to remember what it feels like to be a full human being independent of caregiving.

I urge you to find spaces like this for yourself, so you can continue the fight.

Because:

WE ARE CAREGIVERS.

August 22, 2022, changed my life. My now-fiancé and I had only been dating for two and a half months when he was diagnosed with end-stage renal failure. To say our lives were turned upside down is an understatement. We were still learning about each other when we suddenly found ourselves facing kidney failure — he as the patient, and I as the caregiver.

Coming from a background of service as a Veteran, it was a no-brainer that I would tackle this journey head-on. And oh, what a journey it has been — a rollercoaster of emotions, triumphs, and setbacks all at once.

In the early stages of a relationship, every day usually brings new discoveries, laughter, and sometimes awkward moments. For us, those moments were suddenly magnified by a medical crisis. We were no longer just exploring favorite foods or binge-worthy shows; we were navigating lab results, dialysis schedules, and endless doctor appointments.

My military background instilled in me a deep sense of duty, discipline, and service. But nothing could have prepared me for the emotional intensity of watching someone I love fight for his life. Overnight, I became his advocate, nurse, nutritionist, and emotional anchor. There were days when the weight of responsibility felt overwhelming, and nights when fear crept in uninvited.

Being a caregiver means embracing a whirlwind of emotions: grieving for the life we once imagined, hoping for better days, feeling frustrated by setbacks, and holding profound gratitude for even the smallest victories. This journey has revealed depths of empathy and love I never knew I possessed. We have grown together in ways I never could have imagined, finding joy in quiet moments and celebrating every step forward.

Our story is not one of perfection, but of perseverance and partnership. Every challenge has been a lesson. Every triumph has been a reason to hold each other closer.

If you are reading this as a fellow caregiver, know that you are not alone. Your strength and compassion matter, even on the hardest days. Remember to care for yourself as fiercely as you care for your loved one. As difficult as it may be, this is the number one rule.

The journey will always be unpredictable, but your courage lights the way.

Thank you for joining me as I continue to share our story — one day, one triumph, and one setback at a time. I currently reside in California and have included both local and national caregiver resources.

---

National and Online Caregiver Resources

• Family Caregiver Alliance
  • In-depth information, personalized support, CareNav dashboard, and resources in multiple languages.
  • Family Caregiver Alliancecaregiver
• Caregiver Action Network
  • Free education, peer support, and resources for family caregivers, including a Caregiver Help Desk and condition-specific guides.
  • Caregiver Action Networkcaregiveraction
• National Institute on Aging – Caregiving Toolkit
  • Evidence-based articles, infographics, publications, and videos for caregivers.
  • NIA Caregiving Toolkitnih
• AARP Caregiving Support Groups
  • Guidance on finding the right support group, both online and in-person, with tips for connecting with others who understand your journey.
  • AARP Caregiving Support Groupsaarp
• Family Caregivers Online
  • Articles, webinars, support groups, and a resource directory for caregivers nationwide.
  • Family Caregivers Onlinefamilycaregiversonline
• VA Caregiver Support Program
  • Specialized support for caregivers of veterans, including counseling, education, and financial planning.
  • VA Caregiver Support Programva
• Comprehensive List of Support Groups
  • A roundup of 22 online and in-person caregiver support groups, including those for specific conditions.
  • 22 Remarkable Caregiver Support Groupsseniors

My name is Sam and I’m an extremely lucky, completely blessed, and eternally grateful heart recipient and survivor since April 2015.  Like most organ recipients, I too hadn’t imagined ever needing a transplant but now, almost 11 years post-transplant, I’m not just surviving, but thriving. My first-hand experiences have allowed me to listen, observe, and become well-educated about all things Organ Donation and Transplantation over the years. I’ve become a fierce advocate/voice for transplant patients/recipients and others who may be connected to transplantation, both as an individual contributor and through other advocacy entities/organizations. I’m not an expert in this arena by any means, but I try to be aware, diligent, and be well-informed about things going on in this ever-evolving space.  

I feel it’s important for all of us in the larger transplant community to be involved and invested in our collective care, which is why in upcoming newsletters, I plan on providing information about relevant media stories, advocacy efforts, and proposed legislation.  

If anyone has relevant items/information to share, your content could possibly be featured in this section of the newsletter! Kindly contact me by sending a direct message to my profile on TransplantLyfe. Alternatively, please don’t hesitate to email me at sam@transplantlyfe.com. 

—— 

At present, in the United States, there are over 90,000 people waiting to receive a life-saving kidney transplant. The demand for kidneys far exceeds the supply, leading to long waits, sometimes more than 5 years. Over the years, there have been some policy changes and efforts to improve data, equity, and transplant rates. However, the waitlist continues to grow because not enough folks are able to be transplanted due to the shortage of organs. Additionally, there’s been a troubling decline in deceased donor transplants in the last 12 months. Consequently, the need for more donors is even more critical. One viable solution to increase the donor pool is to encourage more living donors to step forward and donate a kidney to save a life. To that end, there has been some great work to introduce legislation that could help mitigate the organ shortage situation.  

One such proposed legislation is the (EKDA) End Kidney Deaths Act (H.R. 2687) which is a ten-year pilot program that will provide a refundable tax credit of $10,000 each year (for a total of $50,000 over 5 years) to living kidney donors who donate a kidney to save the life of a stranger, by way of a non-directed donation.  A non-directed kidney donor is someone who donates without having a specific recipient in mind when donating a kidney. This one selfless act could even start a “chain” of transplants which would potentially help several recipients. These non-directed kidneys will go to those on the National Waiting List who have been listed for the longest. The hope is that by the 10th year after the passage of the EKDA, up to 100,000 Americans who had been suffering on the waitlist will instead have healthy kidneys. (Also, over this period of time, taxpayers will have saved several billions too.) 

To learn more information about EKDA, you can visit its Congress.gov listing, and/or https://www.endkidneydeathsact.org/., and watch this educational video. Interested advocates can also sign this petition. 

#Advocacymatters #PatientVoice #livingdonorssavelives #shareyourspare #beanorgandonor #bealivingdonorhero 

Twelve years after my kidney transplant, it’s impossible to ignore both the freedom it’s given me but also one of its most serious challenges: skin cancer. With a family history of cancer and lifelong immunosuppression, I knew the risk was real. 

After an initial diagnosis in 2021 and back-to-back diagnoses in late 2025/early 2026, I felt compelled to share my journey with biopsies, Mohs surgeries, and wound complications so others can benefit from my experiences. 

Ultimately, here’s what I learned: 

Stay vigilant about checking your body. Trust your gut. Don’t ever settle for appointments that seem eons away. While skin cancer is a common transplant experience, it’s valid to express displeasure if it happens to you. It may happen again. You can complain that time too. Your gratitude for a life-saving transplant is in no way diminished by being angry (or frustrated) you may have to endure skin surgeries, physical pain, stress, and medical bills. You’re not alone. The TransplantLyfe community is here for you. 

This is my story… 

—— 

Recently, when driving back home from an evening concert in New York City, I reflected on my health and all the gifts my kidney transplant has afforded me in the almost twelve years since my surgery. 
 
The ability to enjoy a night out with friends, experiencing my favorite pastimes (live music) without having to worry about rushing home early to plug into a peritoneal dialysis cycler for 10 hours, is certainly at the top of that gratitude list.  
 
However, the following morning, in stark contrast to the previous night’s fun, I woke up very early for a not-so-pleasant aspect of transplant life: addressing skin cancer (again). 
 
I’m currently 39 years old and my first experience with the dreaded “c”-word occurred in middle school when my father required invasive surgery to remove a melanoma on his arm. At the time, there was concern it had spread to his lymph nodes. Thankfully, the tumor was fully excised and Dad was OK. In the years since, he faced numerous instances of skin cancer, many of which involved Moh’s Surgery to resolve. (More on this highly effective removal technique later.) 
 
When I received my living donor transplant from a close friend in 2014, I was told about the heightened risk of skin cancer due to the immunosuppressive drugs I would be taking for life. When factoring in family history, skin vigilance had to become an important part of my overall routine. Hats and high-SPF sunscreen became staples of my summer. I started seeing a dermatologist once a year for full-body screenings and tried my best to keep mental track of anything on my body that seemed off. Occasionally, some skin lesions such as actinic keratoses were frozen or burnt off just to be safe and to ensure these pre-cancerous conditions didn’t evolve. 

In May of 2021, 7 years post-transplant, I noticed a small, dime-sized mark on the front of my hairline. Initially thinking it was just dry skin, I applied cream and observed it over the course of a few days. Nothing changed and my gut felt that something was wrong. I called my dermatologist who unfortunately was booked out about 8 weeks. I took the next available appointment on June 28^th, we biopsied the spot via a tiny surgical cut, and on July 4^th weekend I received a call noting the sample was a basal cell carcinoma. My first-ever Moh’s Surgery was scheduled for the next morning, and I was told to bring a book or something to occupy my time as the procedure could take upwards of 3 hours. 

Moh’s Surgery involves numbing the area with local anesthesia followed by extremely precise surgical removal of tissue, which is then viewed under a microscope to detect cancer cells along the edges. No cancer cells, no more surgery. If cells are present at the edges, it’s time for more cutting. The wound is commonly sutured closed or cosmetically restructured using skin grafts or synthetic skin substitutes, depending on the location and size of the gap. Moh’s is highly effective for skin cancer, with success rates as high as 99% according to Johns Hopkins Medicine. 

While I was very grateful the cancer was gone, I was still annoyed it took me weeks to get a proper office visit. After doing some online research, I found another clinic, which was highly rated, took my insurance, and even offered night hours and same-day appointments. I never returned to my prior provider. 

Fast forward to the Fall of 2025, when I noticed a small tan colored spot just above my sideburn. My current dermatologist had me come in right away; the spot was frozen, and a few weeks later, it was out of sight and mind. Until it wasn’t. By December, the spot began crusting again and a biopsy confirmed the presence of a basal cell. I opted for Moh’s right away, pre-holidays. I forgot how much the local anesthesia needles hurt when entering the skin. I was quickly reminded of how the fresh incision felt a few hours later once the meds wore off. The sutures on the side of my head were TIGHT and sleeping was very uncomfortable. On New Year’s Eve, we removed the sutures, closing the door on that situation, and randomly biopsied a bleeding spot on my leg, which I initially thought was a minor cut.  

The first week in January 2026, I had a voicemail from the dermatologist about “the results” from my leg. Since they didn’t leave good news on my line, I assumed the obvious: more cancer. Sometimes I hate it when I’m right. 

The leg biopsy site wasn’t healing well, likely due to me being immunocompromised, but after a few days of topical creams, on January 15^th, I had Moh’s for the second time in under a month. This spot was on the shin of my left leg. Same painful needles, same rude awakening hours later when the numbing meds wore off. Sleeping was OK but standing up and feeling the blood flow to the wound was OUCH. 

On January 18^th, still reeling from the pain in my leg, I woke up to tons of blood on my pillow. Despite my head sutures having been removed weeks prior, the center of the wound reopened exposing a gaping hole. This is known as wound dehiscence. It can happen even with a perfect suture job due to a multitude of factors. Thankfully, no infection was present. 

On January 19^th, the wound was re-sutured, and I was back to bandages and the TIGHT pain. We agreed to leave these stitches in longer than usual and will do the same with my shin sutures. 

While more cancer in my future is uncertain, all I know for sure is that I will be going to another concert next week. 

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.  

If you want to practice, here’s a great resource on mindful eating for sweet treats: https://extension.purdue.edu/4-H/_docs/volunteer/resources-and-development/healthy-living/mental_health/mindful-eating-with-chocolate.pdf 

Tip #4: Avoid Haunted Hauls 

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.