Over the past week, I had the opportunity to be part of two experiences within the transplant community that, while different in setting, were deeply connected in purpose. Whether standing in a busy exhibit hall or speaking to clinicians and researchers, one thing became clear: connection and advocacy build upon one another. 

Connection creates the space for stories to be shared, and advocacy ensures those stories are heard. 

Where Connection Begins 

On June 18^th, I traveled to Denver for the Transplant Games of America, where I represented the TransplantLyfe community alongside my friend and colleague LaVise. From the very first day in the TGA Village, we were completely overwhelmed in the best possible way. 

Patients, care partners, and family members continuously stopped by and shared their stories. Each interaction reinforced how powerful it is to simply listen. 

I spoke with a woman who received her transplant in 1994 and has been coming to the Games for decades. When we talked about TransplantLyfe, she shared how meaningful it was to see something like this exist now. At the time of her transplant, there were no resources to connect, so she spent years building support groups herself. During our conversation, I could tell she had done so much for this community, as many people stopped by to give her a hug or a friendly pat on the back. I knew I was in the presence of someone who has made a lasting impact. 

We also invited people to take a short survey about side effects, and so many were eager to participate. One man immediately stepped up and said, “Oh boy, do I,” joking about whether we’d have enough room to capture them all. There was humor in those moments, but also a deeper truth: side effects are a constant and often invisible part of daily life. 

Those conversations stayed with me, especially knowing I would soon be speaking about these same challenges in a clinical setting. 

Just before we wrapped up our first day, one attendee said: “Thank you for being here listening and for all the work that you do.” It was simple, but it underscored how meaningful it is to create space for people to feel heard. 

Where Connection Becomes Advocacy 

That sense of connection carried into my experience speaking at the American Transplant Congress on the hidden burden of transplant success. 

Over the past nine years with my kidney transplant, I’ve come to understand that survival is only part of the story. As I sat on that stage, I wasn’t just sharing my own experience, I was carrying the voices and honesty I had just witnessed days before. 

When it came time to speak, I shared my journey, including receiving a kidney from my mom, who gave me life not once, but twice. I spoke openly about living with side effects, tremors, additional medications, headaches, gastrointestinal issues, brain fog, and the uncertainty about the future. 

As I looked out at the room, I felt encouraged by the willingness to listen. There was openness from clinicians about the burden patients carry and the need for better solutions. 

One quote that stayed with me was: “Change is difficult, not changing is fatal.” 

It reinforced how important it is to bring patient experiences into these conversations, because the stories shared in community spaces are the same ones that can shape the future of care. After the session, several practitioners came up to thank me for sharing my story. As patients, we often express gratitude; to have that gratitude reflected back was something I will never forget. 

Connection and Advocacy, Together 

Looking back, what stands out most is how these experiences come together. 

The conversations in community spaces are not separate from those happening in clinical settings – they are the foundation. 

Connection is where stories begin and advocacy is how those stories create change. 

This week reinforced that when we listen, share, and carry those experiences forward, we create the potential for something bigger, not just for ourselves, but for the entire transplant community.

About Riccardo Braglia and The Journey Through the Desert

Recorded live from the New York City book launch on June 2 at La Goulue, this intimate event featured Riccardo Braglia and Karin Hehenberger. Riccardo is an author, healthcare entrepreneur, Lyfebulb co-founder, and cancer survivor who underwent a bone marrow transplant. In addition, he brings decades of leadership in oncology research.

He was joined in conversation by Karin, a physician, transplant recipient, and Lyfebulb’s president and co-founder. Together, they explored the deeply personal journey behind his book.

Photo: Riccardo and Karin at La Goulue on June 2nd, 2026

Leadership and Purpose After Illness

This conversation explores themes of cancer resilience, survivorship, patient advocacy, and transformation, highlighting the human side of serious illness and the strength required to rebuild life after diagnosis. Riccardo’s story is a testament to the importance of perspective, innovation in healthcare, and the role of community in healing

Watch or Listen to the Full Conversation

You can watch the full conversation above to listen in podcast form.

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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 

Introducing Living Donor Facilitator Maribel Costell, who became a passionate advocate for living donation after donating a kidney to her father. During this webinar, Maribel debunks common myths surrounding living donation, walks through what the living donor evaluation (work‑up) process looks like, and shares thoughtful guidance for those in need of an organ transplant on how to approach this often-difficult conversation.

Registered dietitian Maiya Hogan shares practical tips for grocery shopping, reading nutrition labels, and making heart healthy choices after transplant. A helpful guide for anyone looking to support long-term heart health through everyday habits.

Tips and Tricks:

Healthy eating does not have to be complicated. Small swaps, like choosing lower sodium options and paying attention to labels, can make a big impact. You can also rinse canned food products like beans and vegetables before using them. Even low sodium versions can have extra salt that rinses off quickly under running water.

Making your own dressings is an easy way to control ingredients and avoid extra salt. For ideas, explore this simple dressing guide: https://www.gimmesomeoven.com/salad-dressing/

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. 

New platform supports patients with chronic kidney disease and dialysis through connection, education, and peer support

POMPANO BEACH, Fla., March 12, 2026 /PRNewswire/ — Today, on World Kidney Day, Patient Care America, a premier renal healthcare provider specializing in precision medicine nutrition support and clinical solutions for kidney disease patients, is proud to announce the launch of KidneyLyfe.com, a safe, moderated place where people living with kidney disease can connect online, feel supported by peers, and share experiences with others who face similar challenges.

KidneyLyfe was created to address the isolation many patients experience by offering a safe, supportive online space where individuals can connect with others who understand their journey, access trusted education, and feel more empowered in their care. The platform is designed for patients at every stage of kidney disease, as well as care partners supporting loved ones. 

“This launch reflects our commitment to putting the patient first in everything we do,” said Philip Keough, President & CEO of Patient Care America. “KidneyLyfe is designed around the real needs of people living with kidney disease, supporting individuals as active participants in their care.”

Through KidneyLyfe, members can access:

• One‑to‑one connections with fellow patients who share similar experiences;
• Discussion forums to exchange insights, ask questions, and find peer support;
• Podcasts, blogs, and webinars featuring real patient stories and expert perspectives; and
• Educational resources that extend learning beyond the clinic, informed by both lived experience and clinical expertise.

“Experiencing chronic illness is isolating and finding peer support is often difficult through traditional channels,” said Karin Hehenberger, MD, PhD, Founder of Lyfebulb, a Patient Care America company. “That’s why we created KidneyLyfe – to offer a supportive online space where patients can connect, learn, and feel empowered. This platform is about bringing people together, sharing real experiences, and making sure no one faces this disease alone.”

KidneyLyfe is part of Patient Care America’s broader commitment to advancing patient‑centered care by developing solutions that support individuals with kidney disease beyond the clinic and empower patients in their healthcare decisions.

Patients and care partners are invited to join the community at www.kidneylyfe.com.

About Patient Care America

Patient Care America is a premier renal healthcare provider specializing in precision medicine nutrition support and clinical solutions for kidney disease patients. PCA offers evidence-based therapies such as IDPN (Intradialytic Parenteral Nutrition) and IPN (Intraperitoneal Nutrition) to help manage malnutrition and improve clinical outcomes. Backed by published research, its therapies are trusted by nephrology teams and dialysis clinics nationwide. PCA also offers bundled prescription medications, streamlining delivery and supporting improved medication adherence. PCA advances its commitment to supporting patients beyond the clinic with the patient empowerment tools delivered through its Lyfebulb platform.

www.pcacorp.com

About Lyfebulb

Lyfebulb is a Patient Care America company focused on empowering people living with chronic diseases through education, innovation, and connectivity. Lyfebulb developed and operates both TransplantLyfe.com and KidneyLyfe.com, community‑driven platforms that empower patients to achieve optimal health outcomes, as well as an app to help patients keep track of symptoms and medications, called TransplantLyfe365.

www.lyfebulb.com

MEDIA CONTACT:

Karin Hehenberger, MD, PhD
Chief Medical Officer
Patient Care America
Karin@Lyfebulb.com
+1 917 227 8523

SOURCE Patient Care America

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.