Dr. Alin Gragossian is a physician with dual certifications in emergency medicine and critical care. She’s also a heart transplant recipient. In what seemed like a split second, everything changed as she went from doctor to patient and changed the course of her career and her life forever.
A volunteer opportunity during high school was the spark Alin needed to ignite her passion for medicine. Born in L.A., she attended medical school in Tennessee before moving to the Philadelphia / New York area for residency. She knew she wanted to work in emergency medicine before beginning her residency, a demanding specialty known for its intensity. Being healthy throughout her life, Alin was up for the challenge. It was here everything began to change.
Towards the end of her emergency medicine residency, one of Alin’s attending physicians noticed unusual symptoms, like taking extended pauses to catch her breath. What Alin thought was just a cold turned out to be anything but, and after one shift, she left the ER only to return hours later, this time as a patient.
Doctors discovered that Alin, a seemingly healthy medical professional in her early thirties, was in acute heart failure. Later on, Alin found that the cause of her heart failure was familial dilated cardiomyopathy, which also affected her father.
She was listed for an emergency heart transplant and transferred from where she worked in Philadelphia to the University of Pennsylvania. Alin describes it as “going from normal, healthy adult to heart transplant patient” in weeks.
Around a week post-transplant, Alin got discharged from the hospital and went home to recover. In June, she returned to finish her residency with a renewed perspective, one that gave her the desire to get involved and raise awareness for the importance of organ donation and transplantation.
3-4 months post-transplant, Alin was able to make a connection with her donor family. Utilizing the local organ procurement agency (OPO), Alin exchanged formal letters with her donor’s mom, Laura. After a year, Alin and Laura decided they wanted to connect directly rather than relying on a third party, such as the hospital or OPO. This communication is how Alin began to learn about Lucy, her donor. Lucy also worked in the medical field. She was a respiratory therapist, loved animals, and had a big family. She was 23 when she died because of a sudden brain cyst rupture.
Recently, Alin had the opportunity to meet Laura and her family, an experience she describes as “a surreal, beautiful and bittersweet experience. A story that transcends life itself.”
Post-transplant patients often wonder where to find a community and who they can talk to. In our conversation, Alin highlights the need for peer-to-peer support. She searched hashtags and found connections with other transplant recipients through social media.
“There are tons of doctors I could talk to, but they are never going to understand what I’m going through,” Alin said. “They understand the science, but they don’t understand the needs of a specific patient. When I leave the hospital, I don’t always have the doctors. I need places to get that support.” She also notes that as a physician, while there are textbooks and medical journals, there needs to be more conversation with patients focusing on lived experience.
When I asked Alin for her thoughts on returning to work and reintegrating into life post-transplant, she shared many of the same concerns as her transplanted peers. Being young and just starting a career, there are many challenges in returning to “normal.” She poignantly described the necessity of processing the old life she was losing before she could integrate into her new life post-transplant. Even if there are many ways to go back to what life was before, the life that exists post-transplant will never be identical. Learning to live one day at a time, Alin says, focusing on the moment and knowing that things take time are what helped her transition to celebrate the life she has now.
Check out Both Sides of the Stethoscope, a podcast hosted by two heart transplant recipients and physicians, Alin by Alin Gragossian and Colby Salerno. You can connect with Alin on Instagram at @a_change_of_heart_blog.
Do you need support? Check out transplantlyfe.com and join our community!
Chloe Temtchine is a singer, songwriter and performer. She is also a double lung transplant recipient. And while the two identities may seem to be conflicting, Chloe has managed to bring them together in a way that exemplifies resilience and grace.
Chloe lived with multiple years of symptoms that no one could definitively diagnose. She tried out different doctors, treatments and hospitals, having all but given up. In 2013, after finishing an album and getting set for a world tour, Chloe suffered an episode that would land her in the emergency room and hand her the devastating diagnosis of pulmonary hypertension and pulmonary veno-occlusive disease. She was given labels like “terminal” and “chronic”, and she was told that without a transplant, her odds of survival were grim.
The drugs commonly used to treat pulmonary hypertension, she says, are not allowed in the treatment of pulmonary veno-occlusive disease, and the contraindications made her ineligible for many treatment options that were available. And so she went into research mode. Her options, she says, were to die or find a way to live, and her desire to live kicked in.
Determined to survive, and with the mindset that transplant would be the worst case scenario, Chloe began to put into practice what she calls her 5 key principles to change her life. Those 5 principles were mindset, diet, exercise, quality time with loved ones and creative expression.
Staring small, Chloe remembers when exercise meant walking from the bed to the bathroom. Her guiding principles did work when put into practice, and she did start to get better. Chloe improved in a way that seemed unattainable for someone with her diagnosis. Armed with her oxygen tank, whom she lovingly called Steve Martin, Chloe dove back into making music and living her life.
Until she unexpectedly got worse. While walking on the treadmill one day in her California home, her heart rate shot up to 175. Chloe went into cardiac arrest, and was placed on ECMO while the hunt for a pair of lungs began. There was no time to search for the perfect lungs, and the ones Chloe received were in no way ideal. But on August 5, 2020, she received her transplant.
She says it was like being born, not again, but for the first time. The time on ECMO had taken its toll on her body, and paralyzed vocal chords meant her singing career wasn’t secure. While somebody else may have taken these as signs to shift into a different phase of life, Chloe used them as fuel for the journey.
Her music shifted. “I wrote about superficial things pre-transplant,” she says. “I wrote for myself.” Currently working on a new album, now her music focuses on how far she’s come and the creative energy that fueled her survival.
“Music was my saving grace,” said Chloe. “It’s a form of expression. It inspired me, gave me peace. And everyone has their own version of that. As long as you’re breathing, there’s hope. There’s a way to do it.”
Rather than accept her diagnosis as a reason to never sing again, Chloe says she got creative and strategic in planning how she could still do what she loved, and not let her disease limit her life.
I asked Chloe how artistic expression helped her navigate post transplant life, and what advice she would offer to others. She said “Moments are what matter. This is your life, do what inspires you.”
“It would have been so easy to give up,” she explains, “but you just have to push through it. Keep going. The nightmare will hit you, but on the other side is this heavenly state.”
Pre-transplant, Chloe says she had this terrible idea of what a life with transplant looked like. And she’s glad to say none of that has been her experience.
While a struggle, her life has also been so incredible. With her second chance, Chloe now uses her music as a way to offer hope for others living with pulmonary hypertension, pulmonary veno-occlusive disease and other chronic illnesses.
In sharing her story, she raises awareness for organ donation and transplantation, and started both Brave Kids – a platform for children to turn their struggles into triumph – and the Chloe Temtchine foundation, which focuses on inspiring those living with pulmonary arterial hypertension through entertainment.
For all information on Chloe, links to her various social media accounts and to hear her music, you can go to www.chloetemtchine.com.
Written by Alisha Heibert
Recently I had the opportunity to sit down with Sharron Rousse, a kidney transplant recipient, advocate and the founder of Kindness for Kidneys, to discuss her journey of existing both personally and professionally within the transplant space. She has such a unique perspective, and story, and the kind of personality where, despite never having had a one on one conversation, it felt like we were old friends.
Sharron, who was born and raised in the Washington Metropolitan area outside D.C., was working in education as a school counselor when her first symptoms of kidney disease arose. After a “meet the teacher” night at the school where she worked, Sharron experienced swelling in her legs. It didn’t go away with rest, and she decided that after the following workday, she’d go to the ER. The plan was to work the entire day, but when Sharron arrived and connected with the school nurse, they advised her to clock out early and head to the emergency room immediately. Sharron said the event happened so fast and is a clear memory in her mind; after numerous tests performed at her local ER, a nurse pointed out that her kidneys were failing. Sharron, who had been diagnosed with lupus in 2003, had no indication there was anything wrong with her kidneys, but as more information was relayed to her, she began to wonder about the accuracy of her lupus diagnosis, and whether or not it was her kidney issues in disguise, resulting in the damage having gone unnoticed for so long.
She was transferred from her local hospital to John Hopkins, where she underwent more tests. The most likely option was that Sharron’s kidney disease was linked to lupus, but when she walked out of the hospital a week later with a diagnosis of FSGS (Focal Segmental Glomerulosclerosis: a rare disease attacking the filtering units of the kidney) the gravity of the situation became more apparent. Sharron was young, with no family history of the disease, having just given birth to her daughter a few months prior. This, she said, was the kind of thing that happened to other people. She was given a steroid cocktail, a combination with damaging side effects to her wellbeing, and did her best to resume a normal life in the face of a devastating diagnosis. It held her numbers at bay for a while, until 2011 when bloodwork revealed her numbers had begun to take a turn for the worse.
For Sharron it felt like a slow decline. She tried every alternative therapy in the book, sought second and third opinions. When it became apparent that dialysis was necessary, and a surgery date was booked to place a peritoneal catheter, she didn’t show up.
Instead she sought another opinion. She saw another doctor who ordered more tests, and one day the phone rang. It was that doctor, asking her how she was doing as her labs had come back and her hemoglobin was critically low. Sharron had reached the point of no return.
She remembers being in that hospital room, praying not only for her life to be spared, but also that she would someday be able to use her experience to help others. “My mindset shifted from focusing on me to helping others,” she said.
At this point peritoneal dialysis was no longer an option, and a perma cath was placed. Sharron began dialysis, and the journey of looking for a kidney donor began.
It was discovered that Sharron’s sister was a perfect match to be her kidney donor, but unfortunately the road was not that simple. The pair went through 5 transplant dates before the transplant was successful. The first date was rescheduled due to Sharron contracting an illness, the second and third because her sister had hemoglobin issues which made the surgical team uncomfortable. Sharron’s sister underwent bone marrow biopsies and saw multiple different doctors, and while Sharron tried to tell her sister that this wasn’t necessary, that she’d find another donor, her sister made it clear that this was her mission.
After months of waiting, the 5th surgery date was a go, and Sharron received her kidney transplant. It was on the 5th anniversary of their successful transplant journey, in December of 2018, that Sharron and her sister started Kindness for Kidneys. While she wasn’t clear exactly or what she wanted this to look like, Sharron wanted to give back to the community that gave her so much. She met with a team, tossed around ideas and applied for grants. They developed the ultimate mission of the organization: to educate, empower, and encourage other transplant patients and kidney warriors in their community and beyond. Sharron saw a need not only for patients to be knowledgeable about what was happening to their bodies, but also for caregivers to be involved. Conversations need to be had among families and in community circles, while at the same time encouraging representation within the transplant community.
“When it’s coming from someone that looks like you, you’re more apt to listen,” said Sharron. The African American community in particular is taught to be strong, to do what you need to do, and the approach Sharron found was one tailored to white presenting individuals. These conversations, she found, not only help those dealing with kidney disease, but also can also help prevent the disease entirely.
Kindness for Kidneys began with donating care packages to dialysis patients during the holidays. Their story quickly caught the attention of a local news crew, and within only a few years they were able to expand their Christmas hampers to multiple different dialysis locations. Just before the COVID-19 pandemic, Kindness for Kidneys started in-person support groups. They quickly had to alter the plan, but this unexpected detour was a blessing in disguise that took their support groups online, and global. The organization is now branching back into in-person support for patients and their caregivers, focusing on thriving with your condition and teaching on topics such as diet and mental health.
I asked Sharron where she wanted to be in 5 years time, and her first focus was on maintaining the vitality of her transplanted kidney. After recently transitioning into being self-employed, she is hopeful for a thriving business as she focuses on education and health consulting. Her ultimate goal for Kindness for Kidneys is to create a one-stop-shop wellness hub for kidney disease patients and their families, both in her local community and beyond.
You can connect with Sharron on Transplantlyfe, where she is an active member of our community. Their website is kindnessforkidneys.org, and they are on Instagram, Facebook, Twitter, and YouTube @kindnessforkidneys.
This is the Lyfebulb CVS kidney care innovation challenge fireside chat. This innovation challenge highlighted the sparking of innovation and care to improve quality of life with people with kidney disease. Significant inequalities exist in kidney care and poor prognosis from the diagnosis point as well as transplant access – the gold standard for care – are common. Patient education for those living with kidney disease remains scant and spotty.
This panel includes Dr. Jesse Roach, a key thought leader representing nephrology at CVS kidney care, Jennifer Miller, an executive in CVS kidney care and a judge of the challenge, the winner, Dalton Shaull, CEO of Omni Life, as well as honorable mention, Sharron Rouse, who developed Kindness for Kidneys, a movement aimed at improving education and equity for kidney warriors.
CVS sponsored this innovation challenge to highlight healthcare inequality in the United States. 35% of people with renal end stage disease are BIPOC. They are 1.3 times more likely to develop kidney disease and 40% less likely to receive a transplant or home dialysis. Some inequalities are due to social determinants of health, like diminished access to technology. Finalists were chosen whose innovations support underserved communities and assist patients find resources and improve their care.
The leaders of each company are personally associated with kidney disease. They are either patients or care partner – for them, the commitment is personal. There were ten wonderful finalists, all of whom represented diverse solutions to address diagnostic, treatment, and support issues. They were asked, how each innovation addresses an unmet need while proving market feasibility and proof of concept.
OmniLife, the challenge winner, is a care provider collaboration tool designed to improve patient care in transplantation and organ failure. It leverages the provider network to increase access to transplant. A clinical decision support tool that analyzes how centers are evaluating patients for transplant is included. This care coordination tool also includes mobile access to track where a patient is at in their journey.
With the monetary award, OmniLife plans to release a patient referral app. Understanding the organ review process is vital to patient transparency in the care continuum, educating patients on how, and by whom, organ offer decisions are made. In transplantation, there is a surgeon-led intake service that reviews the kidney offer. This software would assist how AI and data is leveraged to optimize kidney allocation decisions. Additionally, in the evaluation and listing process, this transparency ensures that patients with the greatest need are at first in line.
The honorable mention winner, Sharron Rouse, is a kidney transplant recipient who publicly shares her transplant experience. During her transplant process she saw a need for greater community connectedness to expand conversation with others. On her fifth kidney anniversary, she founded Kindness for Kidneys, whose goals are providing education, resources, encouragement, and empowerment so patients can actively partner with their healthcare teams.
CVS strives to put the patients’ needs first and meeting the patient where they are. There can be wonderful solutions to patients’ needs but, if those solutions never reach the patients; it’s an exercise in futility. Initial evaluative efforts shone a light on those innovations with the greatest potential to increase connectedness. Within this award process, there were so many connections made within finalists. No one person or organization knows it all; it takes team-based approaches and collaborative thinking to ensure innovation and representation. That is how equitable healthcare becomes possible for everyone.
An Interview with Chet Bennett, our community manager Alisha sat down with Chet to talk about changing the world.
When I interview people for these articles, the focus of conversation is mostly about their lives, and I take the role of a viewer in the retelling of their story. When I spoke with business man Chet Bennett, I was pleasantly surprised when he began asking me about my life. A welcome change and a great introduction to a man who brings this friendly energy to all his relationships!
Chet is the founder and CEO of Bennett Career Institute: a barber and cosmetology school located in the heart of Washington, DC. An alumnus of Morehouse College with a master’s degree from Howard University, Chet has over thirty combined years working in the beauty industry. He started in a tiny salon, a college educated grad, for seven dollars an hour back in 1992 at the encouragement of his pastor, and the rest was history. The Bennett Career Institute opened its doors in 1996, a family business with a desire to educate the next generation (of beauticians, cosmetologists, aestheticians, etc). Being a beauty school that worked primarily with financially disadvantaged individuals, Chet realized one of the barriers to education involved childcare. Thus Bennett Babies was born: a quality childcare facility created to serve students of the Bennett Career Institute that has since evolved into serving the greater Washington metropolitan area.
This story alone is a successful one, but this was only the beginning for Chet. He seemingly had it all: running his own businesses, speaking at engagements, and hosting a radio program. He also had kidney disease that, without a transplant, would ultimately have proven fatal.
Chet describes his diagnosis as shocking, but not surprising. He had high blood pressure, and diabetes. His initially-prescribed diabetes treatment induced gout, ultimately resulting in kidney failure. His doctors warned him this was the path he would go down without a diet change and lifestyle overhaul. An innocuous-enough stomach ache prompted Chet to book an appointment with his primary care doctor, who diagnosed him with kidney failure, and soon he learned he required dialysis to live.
“As a motivational speaker and radio show host, I felt like I failed,” says Chet. He recalled the memory of slinking into dialysis, hiding from anyone who might know who he was, feeling an intense amount of shame around the need for dialysis and a kidney transplant. “I didn’t want people to know Mr. Bennett was vulnerable,” he said.
While waiting for a transplant, Chet had an epiphany. If God gave him the opportunity, if he received a transplant, he would do everything in his power to change the way people look at kidney disease. After a year on dialysis, a donor was found and he received his long awaited kidney transplant, and entered into the next phase of his life.
From this place, the Kidney Kafé was born. What started out as an online talk show turned into a line of seasonings and spices, all with the focus of teaching kidney and dialysis patients how to nourish themselves through food. “So much of our diet is centered on sodium, especially in African American communities,” Chet explained. “And I wanted to show people that flavor can be achieved in other ways.”
With a target audience of 18-30 year olds, Kidney Kafé not only taught people how to cook but provided a jumping-off point for conversations surrounding health and wellness.
His innovation didn’t stop there, and Chet moved into launching the C. Alan Men’s Grooming Salon. The salon is an upscale, modern establishment targeted at men, who are often overlooked in the beauty and self-care industry, not only aspiring to make one look better, but also feel better.
“We want to make the customer feel amazing, special,” Chet said. Kidney disease, dialysis, and body changes can take a huge toll on a person mentally and emotionally, and the need for a safe space where people could come and be taken care of was huge. At the salon you’ll find everything from basic grooming to detoxes curated to what Chet himself needed while undergoing treatment to male units created to combat post-transplant hair loss.
“When you look better, you feel better,” said Chet, “and that’s what we’re trying to do.”
Chet hasn’t slowed down in being an advocate for the kidney disease and transplantation communities, and I asked him if he had a chance to talk to himself prior to his diagnosis, what he would say. He told me, “I should have become more of a health advocate.” Knowledge is power, and when you’re able to identify problems earlier, an entire world of options and treatment opens up. Men, particularly African American men, avoid medical visits for fear of what they might find, and this avoidance can create long term problems.
“If I’m not good for Chet, I’m not good for anyone,” he said. “You have to be mature and responsible enough to take that initiative and take care of yourself.”
Chet Bennett personifies, “Be the change you wish to see in the world.” Even with everything on his plate, this is only the beginning for Chet.
You can find the Kidney Kafé, Kidney Conversations, and everything Chef Benne at kidney-kafe.com
For the shop, speaking engagements, and events, check out calanlifestyle.com
His YouTube channel is Kidney Kafé Chef Benne or you can find him on Instagram @chefbenne_kidneykafe or @chetbeautykingbennett
Shelby Hansen is a mom to four kids, an airforce wife and a kidney transplant recipient, and when I sat down to talk to Shelby, I noticed two things right away: her infectious energy and how much she advocates for wellbeing within the kidney community.
A year after the birth of her third child, while living in Florida, Shelby was diagnosed with stage 4 kidney disease. A seemingly healthy young mom, with no family history of kidney disease, Shelby received a diagnosis for Alport’s Syndrome, a genetic condition which inhibits the kidneys from properly filtering blood, allowing blood and proteins to pass into the urine.
In January of 2016, she was listed for transplant and Shelby’s time on the waitlist was anything but straightforward. On Father’s Day of 2016, only a few months after having been listed, a little surprise came in the form of a positive pregnancy test. With a GFR of 19, Shelby was terrified the pregnancy would have a negative impact on her kidney function, and on the health of her growing child. Juggling 3 other kids, air force life and failing kidneys made for an exhausting pregnancy, and despite it all, at 36 weeks gestation, Shelby delivered a healthy baby boy.
“He goes by his middle name,” Shelby told me, “Ezekiel-which means God will strengthen. I believe that through a very challenging time in my life, I was strengthened.”
In the summer of 2017 a move to Michigan meant changing transplant centers. And on the 4th of July the following year, the call Shelby had been waiting for came.
“I received the call for a deceased donor transplant. I had been matched with someone in California and they were flying the kidney to Michigan because I was 99% sensitized. Due to being highly sensitized, finding a match for me was nearly impossible. Doctors told me that if I didn’t get this particular kidney from California that day, it would likely be another 10 years before they’d find another match. “
The surgery went well, aside from low blood pressure, but acceptance of the new kidney wasn’t immediate. In the days after surgery, Shelby endured multiple scans and biopsies. They revealed that while blood was flowing to her kidney, the kidney wasn’t filtering as it was supposed to, and for reasons still unclear, it wasn’t until August that the new kidney began to filter.
This entire experience, with all its ups and downs, gave Shelby a passion for mental health and advocacy, which she put to use working as a mindset coach within the kidney community. Getting a transplant is an isolating and lonely experience, and one that isn’t well understood by the outside world. Everyday life is filled with an extraordinary amount of stress. Add in the misconceptions surrounding kidney disease and transplantation, and it’s enough to knock anyone off kilter.
Fears of the future, regrets of the past, an ableist society, and seemingly insurmountable challenges exist as a breeding ground for self doubt and discreditation of self. Having a witness to your pain, Shelby says, holding space for you and reframing the conversation, can be a pivotal moment in the journey from surviving to thriving. I asked Shelby for some simple ways to begin focusing more on taking care of your mental health as a transplant patient, and she told me that a great place to start was paying attention to what you’re already doing. Give yourself credit for things like feeding the kids, taking your medication, resting when your body needs to rest. A simple mindset shift can be the catalyst for healing. Of course it’s easier said than done, which is why coaches like Shelby are here to help!
As we ended our time together, I asked Shelby what she wanted to say to our transplant community, and what she wanted people to know. Her answer was two-fold, and sums it up just about as good as anything I’ve ever heard.
The first is feeling your feelings. The grief, the pain, the disappointment, the struggle, being present with whatever emotion is arising allows you to let go. Feelings buried alive never die, they just keep showing up in new ways. And the second part of that thought is knowing none of these things change your worthiness. You are loved, valuable, and your worth is infinite.
You have far more power than you give yourself credit for. And there’s a big world out there waiting just for you.
You can connect with Shelby on transplantlyfe @shelbycreates, on her instagram @shelbycreates.a.beautiful.life or on her website https://shelbykhansen.com/
SHe is also the host of Creating Your Beautiful Life podcast, available on spotify and apple podcast.
Self Coaching Practice with Shelby
Shelby shared with me a technique she calls self coaching, that I think could be beneficial to all of you. Feel free to apply her technique to your own life, and let us know how it went in the forum!
“I start by journaling out how I’m feeling about any situation. I divide the facts from the opinions and then pick out the thoughts (opinions) that I’m having that are causing me a lot of emotional pain. Then I look at one specific thought that I want to examine.
If I believe the thought that “life would be better without me having kidney disease”, I ask myself, “How does that thought make me feel”? For me, I feel disappointed when I think that thought.
The next thing I do is to allow and process the pain. So I let myself feel the feeling of disappointment–because that’s what my body wants to do. I relax into disappointment, I breathe into it, and I let it go where it wants to in my body. I name where I feel it, what it looks like, the shape, the color, the consistency. I stay present with the emotion until it begins to loosen in my body.
Once I have allowed the emotion and let my body process the emotion (because that’s what bodies are made to do), then I can decide if I want to keep the thought “life would be better without me having kidney disease” or if I want to shift into a new perspective. And often, a new perspective will present itself. For the situation of my diagnosis of kidney disease, I’ve often realized that it’s just as true that “My life is amazing because of what kidney disease has helped me discover about myself”. This thought feels more empowering to me and is something I actually want to believe. So I can decide that I want to focus on believing this new thought on purpose.
My worthiness did not change from believing one thought over another, but my experience did. I witnessed myself through the disappointment, and I’m allowing the empowered thoughts to come through because that’s the next experience I want to deliberately choose.
This process of witnessing and experiencing myself has been key to my healing. I’ve also done this process with a coach when I’m too caught up to have the clarity to see what my brain is doing in the moment. Self-coaching is a tool that I use daily to help in my emotional healing process.”
Written by Alisha Hiebert
Turned Leading Advocate
By Alisha Hiebert
If you’ve been around the transplant community for any length of time, you’ve probably heard about TRIO. TRIO stands for Transplant Recipient International Organization, and its goal is simple: to support transplant patients. Founded in 1987 by Dr. Tom Starzyl and his patients, the organization operates in ‘chapters’ both on the domestic and international levels. The goal is to educate and advocate for patients, and as a whole, TRIO is widely recognized in the field of transplantation. I had the privilege of sitting down with the co-founder and president of TRIO’s Philadelphia chapter Jim Gleason.
In October of 1994, Jim received a heart transplant at the University of Pennsylvania in Philadelphia. His second chance at life, and the entry into his ‘bonus years’ as he calls them, inspired Jim to get involved in advocacy, and he worked with a local OPO (organ procurement organization) promoting the need for organ donors. It was here where Jim met his wife, Pam. Pam is a donor mom, having donated her son’s organs when he was killed in a bicycle accident in 1997.
I asked Jim why advocacy was so important to him, and he told me about his family. “At the time of tragedy,” Jim said, “in a distant family, they anonymously gave the gift of organ donation to save the life of this young father a distance away. How does one say thank you for that selfless gift? For me, it is in using that life extension to help many others who follow in my footsteps as they too face death, and possible organ transplant.”
Working with TRIO has served as an extension of Jim’s already existent advocacy, and a way to magnify his service. He says the collaborative work of TRIO allows them to reach far beyond what one individual could do alone. Most recently, a 7 year advocacy project was completed highlighting patient awareness on the risk of cancer post transplant, with 46 pages of action-based, fact-filled content.
Jim said it’s not a question of whether or not someone will donate their organs when they die. They are going to donate their organs, either to save someone’s life or to the ground. This way of framing the conversation makes the question much easier to consider and serves as a message for the community in deciding what to do with their organs when they no longer need them.
I asked Jim what advice he would give someone wanting to become involved in transplant advocacy and he said, “The life story of one’s organ transplant is so impactful in shaping the appeal of registering to be an organ donor when life is over. We must share that
amazing life adventure, as the most powerful message, to give hope for more
organs saving many more lives every day.” He urges people to simply get the message out there and to live a life that inspires others to donate.
If you are interested in finding out more about TRIO and what they do, or becoming involved in your local TRIO chapter, visit www.trioweb.org
By Alisha Heibert
Come meet Alisha and our transplant community on TransplantLyfe
If you’ve been on TikTok, you’ve probably seen the joy and energy that is Bella. Bella, with the help of her mom Kyla, runs a popular TikTok account chronicling Bella’s unique health challenges, along with a healthy dose of fashion, beauty by Bella, and a lot of laughter.
Bella Thomson is a 9-year-old girl living in Saskatchewan, Canada, with her mom, dad and little brother. She was born with severe combined immunodeficiency (SCID); Hirschsprung disease, a rare bowel disease that took the entirety of her colon; and cartilage hair hypoplasia, a form of dwarfism. Throughout her life, Bella has spent more than 850 days in the hospital, received 21 surgeries, undergone a bone-marrow transplant, and received countless needles.
Bella is a trailblazer, in every sense of the word. She is the first pediatric patient to use Revestive in Alberta and Saskatchewan, a drug that has allowed Bella to go off total parenteral nutrition (TPN). You can often find her singing and dancing during long hospital stays, and her unique joy and spark has allowed her to not only survive but thrive, as well, in her unique situation.
Receiving a solid-organ transplant post bone-marrow transplant, especially in the pediatric population, isn’t a typical transplant circumstance. In 2020, it was deemed that Bella was in bowel failure, the first indication she needed a bowel transplant. The second was that Bella had only one usable, accessible blood vessel left in her entire body. Many ups and downs in her stability led to the placement and removal of multiple Broviac lines, destroying Bella’s vascular access.
In Canada, there are only two hospitals that perform solid-organ transplants in pediatrics – the Stollery Children’s Hospital in Edmonton, Alberta, and The Hospital for Sick Children (AKA SickKids) in Toronto, Ontario. Neither center is close to Bella’s hometown, which requires her to travel, potentially for months at a time during long stays. Due to her unique situation and prior bone-marrow transplant, the transplant team in Alberta (which would have been the closest location) decided they were not equipped to handle her complex care and denied her listing for a transplant. This meant Bella and Kyla had to fly across the country to receive lifesaving medical treatment.
Kyla told me about some of her struggles, including feeling like they were taking so much from a medical system that wasn’t equipped to deal with cases like theirs. Bella’s nurses would ask how Kyla was doing, and she could only reply that she felt defeated, taking all this help and being unable to give back. When Bella was listed for transplant and her condition became easier to manage upon receiving care at SickKids, it was only natural, Kyla said, for their family to begin giving back to the organizations and people that had given them so much.
“So many people supported us, and it was so healing to be the help and not just take the help,” Kyla said.
Kyla credits her strong support system with helping her get through everything. She and her husband lean on each other often, a real team in caring for not only Bella, but their son, Waylon, as well. Friends and family also generously offered their time, resources, and energy to lend the family a hand. The clearest message to Kyla in all of this was that she didn’t have to do it alone. “Being Bella’s mom, I learned I can’t handle everything on my own. And, also, I can do a lot more than I thought,” she recounted.
Bella and Kyla also work together to run Bella Brave, an organization created to give back to the community and to inspire others. Their inspirational message is consistent throughout all of their various platforms, and it’s the one most important for them to get across.
When I asked Kyla what she’s looking forward to, she noted that’s she’s excited to connect with other caregivers in similar situations and to finally join the post-transplant community.
You can find the dynamic duo of Bella and Kyla on TikTok and Instagram @kylact and on their website, bella-brave.com.
This is a recap of the first webinar – Living Donors and the Transplantation Process – in the Lyfebulb-Columbia University/New York-Presbyterian Hospital patient information and education series, which is sponsored by Veloxis Pharmaceuticals.
Panelists and moderators included:
- Mark A. Hardy, MD, PhD (Hon), FACS – Auchincloss Professor of Surgery, Director Emeritus and Founder of the Transplantation Program at Columbia University Medical Center
- Karin Hehenberger, MD, PhD – Founder and CEO of Lyfebulb and visiting associate researcher at Columbia University
- David J. Cohen, MD, MA – Professor of Medicine (in Nephrology) and Medical Director of Kidney and Pancreas Transplantation at Columbia University Irving Medical Center/New York Presbyterian Hospital
- Hilda Fernandez, MD – Assistant Professor of Medicine (in Pediatrics) at Columbia University Irving Medical Center/New York Presbyterian Hospital and Vanderbilt Clinic
- Lloyd E. Ratner, MD, MPH, FACS, FICS (Hon) – Professor of Surgery and Director of Renal and Pancreatic Transplantation at Columbia University
- Carly Rebecca McNulty, RN, BSN, CCTC – Senior Pre-Transplant Coordinator at the Columbia Kidney and Pancreatic Transplant program
This session’s discussion centered on end-stage renal disease (ESRD) management before dialysis and transplant, what it’s like living with kidney disease and what can be done to prevent further progression, as well as treating the patient in the disease journey.
The kidney has several roles – one being regulating fluid balance. The human body takes in more salt and water than it needs, and whatever isn’t utilized is excreted in the form of urine. The kidney also regulates mineral content in the blood, such as potassium, phosphorus, and calcium levels and clears waste products of metabolism like proteins and nitrogen. Lastly, it regulates blood counts, preventing anemia. If any of these functions aren’t properly regulated, one reason may be that a person has kidney disease.
In adults, the cause of kidney disease is primarily diabetes, high blood pressure (hypertension), or other autoimmune diseases that cause nephritis, which is inflammation of the kidney. Function can be preserved by maintaining healthy blood pressure and blood glucose levels and monitoring other body functions. In children, the primary cause of kidney disease is congenital issues, which are primarily determined before birth or at infancy due to infections, proteins, or blood found in the urine. A kidney biopsy is the best way to determine the presence and source of kidney disease. Sometimes an ultrasound or a CAT scan can determine the disease as well.
If a patient is showing symptoms of severe kidney disease such as nausea, severe fatigue, and other complications, even with modified medications and diet, then proceeding with dialysis until a kidney transplant is available is the appropriate course of action.
Evaluation for transplant begins when kidney function (measured by “Glomerular Filtration Rate or GFR”) is around 15-20% of normal kidney function, and most people receive a transplant with around 10-15% of GFR.
A kidney transplant can either come from a deceased or living donor. In 2019, 41,000 people in the United States were newly placed on the waiting list for kidney transplants, and there were only about 23,000 kidney transplants done. This means that nearly 20,000 individuals who need transplants are not able to get them each year. The wait time for a deceased donor can be years, and there is a great need for more living donors.
In the last few years, research into genetically engineered organs from animals has advanced. In the first of its kind, a pig kidney was recently transplanted into a human with success, albeit very short term success. This was a temporary experiment, however, and there is still much to learn and advance in this field. Nevertheless, many clinicians and researchers continue to research advancements to make transplants more accessible and successful for patients.
Listen to the full webinar on our YouTube channel here to learn more about innovations and research involving dialysis and kidney transplants! You can also register for future webinars and view all past webinars on TransplantLyfe.
Featuring Karin
After Karin was diagnosed with severe kidney failure, her body continued to deteriorate. She remembers getting to a point that her “blood sugar was so brittle that [she] didn’t know if [she] would wake up.”
But, Karin was lucky. She received a kidney donation from a living donor – her father. Check out this video to learn more about her health and transplantation journey. And, read more about the process of becoming a living donor here.
Finally, follow along here and on Lyfebulb’s social-media accounts to get updates about our latest installments of the MyLyfe series, which covers our team and ambassadors’ stories about their health journeys.