I had my first kidney transplant on March 12, 2009, and from all perspectives, it was a great success!
It allowed me to go on to have a pancreas transplant (without a normal kidney function, it would have been hard to go through that very tough surgery), venture out to start a company (Lyfebulb), and conceive a child. Those were the highlights.
But let us not forget everything else that this kidney allowed me to do. First of all, it let me live. Without it, I would most likely have been on dialysis within a year or so, and the life expectancy of a diabetic person on dialysis is less than 5 years. I also traveled to many interesting places, got married, enjoyed new and old friendships, and participated in sports such as tennis and running during these 14 years.
So, to start, I want to thank my donor, my Father, for this life-saving gift.
However, for the past 3 years or so, my kidney has been in steady decline. Likely, some combination of Covid, the stress of the breakdown of my marriage, leaving Manhattan and setting up my life in an old but beautiful house in Westport, CT, balancing the roles of an entrepreneur and single mother, and the effects of the drugs that suppress my immune systems were all contributing factors. Most importantly, the fibrosis caused by tacrolimus truly put my kidney through the wringer. It is so sad that the very drug that is the gold standard for transplant patients (to avoid rejection) is also the one that causes decline of kidney function over time.
Over the past year, I started noticing a few things about my health that were troublesome. First, I was more tired and less social than before. I just didn’t have the energy to embrace situations I craved in the past. Luckily, my daughter is only 5, so she goes to bed early, and that allowed me to go to bed early as well. Importantly, I did not ever let this fatigue affect my attitude at work or the care taking of my daughter. But it did affect my health.
I was also much more sensitive to feeling cold. The only times I was really comfortable were in direct sunlight (which causes skin cancer in people like me) or in my sauna. I would sit in my sauna several times a day just to feel better. It did not do wonders for my iPhone’s performance when I brought it in with me.
It was painful to be this cold and it was due to my grave anemia, which was driven by kidney failure. Despite treatment with erythropoietin stimulating drugs, such as Aranesp, and even a blood transfusion, my hemoglobin would hover around 6-7 (versus a normal range of X – Y). Anemia also impacted my ability to do exercise, since my muscles would not get enough oxygen to function, and even my heart was struggling at high exercise levels.
During this year, I also went through several surgeries for my skin cancer, including one on the tip of my nose, which needed flap reconstruction by a plastic surgeon. He remarked afterwards that my clotting time was quite long. I explained that both my platelets were low and those I had were faulty, due to my low kidney function.
My family noticed my decline as well, and during the summer of 2022, my father asked me to speak to my middle sister, Lisa, who previously had offered to give me one of her kidneys (without me asking). As I was just 40 at my initial transplant, it had always been the plan that my father was to give me the first kidney, and then one of my sisters would give the second.
Lisa has always been of excellent health. She is 5’11’ and runs almost daily, has a resting pulse of 50, and is also an incredibly loyal and lovely person. Her children are 16 and 13 years old, so she was past the physically demanding baby years. I set up a zoom call with her, since I didn’t want to talk to her without seeing her. She immediately said, “I already told you I was going to give you a kidney”. It was such a relief for me that I didn’t even have to ask her.
I have heard stories from other people. Some people worry about that question so much that they avoid family gatherings and getting close to friends.
Now it was a question of when and how to coordinate some important events ahead of time. I needed to have a total hip replacement in August of 2022, and we were discussing whether it made sense to do the transplant before or after that, since that surgery would put additional stress on my kidney. I ended up getting the hip done successfully, but the stress of the surgery caused an additional drop in hemoglobin. So I needed a blood transfusion that September. This procedure gave me the “boost” to make it through the Fall.
Before that surgery and the corresponding impact, my nephrologist had wanted to wait to do the next transplant until my function had declined further. But I was feeling weaker and weaker, so over Christmas, we agreed to do the transplant over Easter, in April of 2023.
My sister Lisa works as a professor at a business school in Barcelona, Spain, and she needed to plan for a month of absence and also of course for childcare during the time she was going to be away.
We both got extensively evaluated from August of 2022, first with respect to matching our blood types, and then our tissue types, and finally making sure I didn’t have antibodies toward her. Our general health, mental health and social and financial support were evaluated as well, and I especially needed to be assessed from a cancer and infection perspective. I also needed to be up to date with respect to vaccinations and dental care as well as any cancer screenings.
Lisa was strong and passed with flying colors. While I had a nuclear stress test that flagged for potential heart blockage. The surgery required for a kidney transplant is serious and cardiovascular clearance is a critical part of evaluation. Since the stress test was abnormal, they required I undergo an angiogram, which involved using a contrast agent. I was very worried about this, since contrast is toxic to the kidney and I was convinced that the stress test was erroneous (I had always had a healthy heart). However, based on the upcoming surgery, and my many years with diabetes, they would not let me avoid the angiogram.
The day of the angiogram I was so nervous. I knew there was a huge risk involved here, since my kidney function was already only 12 percent, and I could not really go lower without extensive problems. My dad took me to the hospital and the procedure ended up showing no blockage; the stress test indeed was indeed erroneous.
However, the effects of the procedure kicked in. The sedation caused massive nausea in me. I could not stop vomiting for the next 24 hours. I tried to treat this at home, but could not keep anything down, and I had to go back to the emergency room the following day to get IV fluids and IV anti-emetics.
The interventions worked on my nausea, but the damage to the kidney was extensive. Between the contrast and the dehydration due to the vomiting, my poor kidney was in acute failure. Within a week I was in hypertensive crisis and severe uremia. My kidney function crashed to 5 percent. Dialysis was the only option for me to survive.
The symptoms I had experienced for the past year seemed like heaven compared to how I was feeling at that time. My head was pounding, I was severely nauseous, and my legs did not fit into any of my pants. My ankles were bloated and my face was unrecognizable. I was severely tired and depressed. I was hospitalized and emergency dialyzed for four days after getting a catheter into my neck vein to link to the dialysis machine that would save my life.
I have never in my life felt as bad as I did in the days before the dialysis. Although it saved my life, the sessions (9 in total, over three weeks) were pure misery.
Two things saved me: thinking about my daughter, and knowing I had to get well for her, and the transplant scheduled for April 13. I knew this was a phase that would endure, and once the transplant worked, I would feel much better again.
Writing about my experiences helped to keep me on track. I have always loved writing and it helped me keep my thoughts from spinning out of control.
My support system kicked in. My sister traveled to NY and came to visit me when I was in the hospital getting dialyzed. My friend and colleague, Leslie, brought food and amazing sweatpants to cheer me up. My family back in Westport were close in touch and took excellent care of my daughter. I truly discovered what a wonderful support system I have, from the mothers of my daughter’s friends to my amazing mother and father.
And we got dealt one more ringer. Shortly after her arrival for Easter weekend and final, routine pre-transplant donor tests, my sister was diagnosed with Covid! And she passed the virus to my parents. None of them had had covid for the past three years, but now they got it! I lost my family network of support for a week, while I was at my weakest.
I had originally been scheduled to do just three outpatient dialysis sessions after being released from the hospital. Now, I was worried about the timing of the surgery, which was deferred until a week later. I needed more outpatient dialysis (6 versus 3 sessions) to make it to the transplant. No one could stay with my daughter and me. My parents used masks and drove me to my dialysis and my daughter to school, and our nanny was very helpful in her support.
Ultimately, the surgery was moved to April 19, and I was as ready as I could be!!
Continue reading part 2 of Karin’s journey: The Dialysis Cleanse
Since studying diabetes in medical school, I have been awfully afraid of kidney disease. The complications of diabetes both scare and fascinate me – so much that I went on and did a PhD in diabetic complications followed by a post doc at Harvard studying the same. I had an almost obsessive fascination with the issues I might face in the future, if I were unlucky.
25 years later I am on dialysis – the ultimate, final step in kidney failure treatment. Dialysis implies the kidneys are no longer working, even minimally, and a machine needs to take over the very important functions normally executed by those bean (or as my daughter has come to name them “croissant”) – shaped organs.
The kidneys do more than excrete urine. In fact, many of the functions are not well known to most, including their importance in blood pressure regulation, hemoglobin production (which carries oxygen to all tissues), calcium and phosphate metabolism and electrolyte regulation. However, what most of us know is that kidneys filter out toxins and break down certain drugs and compounds. That means that if the kidneys don’t work well, you literally become toxic (uremic) and those compounds that are meant to be broken down in the kidneys remain at very high levels in the blood.
I was facing dialysis in April of 2023, due to a few unfortunate events that can be seen as cautionary (and, by me, as detrimental). I had been planning my second kidney transplant for a while. I had lots of time to speak to my donor (my sister), get used to the idea of going through surgery again and plan for the recovery carefully. However, during my cardiac evaluation, an errant stress test triggered a confirmatory angiogram, which luckily was negative for blockage. But this test (angiogram) used a contrast agent which led to my kidney failing rapidly and acutely.
I started feeling very differently than before. My chronic fatigue that I was getting used to was worse. My sensitivity to cold was complemented by nausea, itching, persistent high blood pressure (sky-high levels), followed by headache and blurred vision. I was uremic and so swollen that my clothes did not fit, and I was very uncomfortable.
I had to be emergency-hospitalized, and right before my first dialysis session, I was more scared than I have been of anything in my life.
I had pictured the scenario many times, a machine taking over from my kidneys, vacuuming my blood out, filtering and cleaning it, then pushing it back into my vessels. I envisioned myself hooked to a machine, without which I would slowly die of internal poisoning.
The reality was that my first session was in a low-lit room at Columbia Presbyterian hospital, in a comfortable bed, with a Samsung screen in front of me, and a gentle nurse who took me through the process. Three hours later, I was rolled back to my room. It was not that bad!
I went through another two sessions in the hospital, one a day, which is very aggressive, but my toxicity levels were bad and I needed detoxification desperately to get ready for my transplant.
When I was released, I had to go to dialysis in an out-patient setting, and the scenario was very different.
I was now taken to a brightly lit, huge hangar-like room, with multiple chairs seated close by each other. I heard beeping sounds constantly and had very sick patients on either side of me. The personnel were friendly and one nurse offered me a fleece blanket, headphones and a few documents to read in my own time, and then she hooked me up to the machine.
The beeping drove me crazy, so I placed the brittle, plastic headphones over my ears (they barely covered the ear). The chair was one of those recliners that if you move the least, the whole thing goes horizontal; there is no middle step. And the blanket was flimsy, but appreciated. It definitely made me less cold since the environment gave me chills. During my first session, an elderly woman kept crying out “help me” every five minutes, until an ambulance came to pick her up. Next to me was an older man who had issues breathing. I tried to shut my eyes.
When I was done, three hours later, the nurse asked me to weigh myself again (a large scale sits at the entrance) to make sure enough fluid had been “taken off”. I felt wobbly and had a headache that was explained by the “electrolyte shift” that had taken place.
I bravely walked out to be driven home by my mother. I thought about those without family who had to go home by themselves after these sessions. The physical and mental trauma that had taken place do not set one up well up for cooking dinner, or driving a car.
That evening, I was truly exhausted. But the next day, I felt remarkably better! I enjoyed a healthy meal for the first time in quite a while without nausea, could go for a walk without fatigue and generally felt “cleaner”.
Dialysis is, for sure, not worse than death, which is what I had compared it to previously. But I reflect, surely there must be a way to improve the way the treatment is being given to the 550k patients on dialysis in the US?
Three times a week, 12 hrs a week: surely we can work on the setting and the use of time? How about some better chairs, lower light, privacy if wanted, and more sense of community if desired?
Kidney warriors are strong and determined, but we need education about diet, exercise and importantly, ways to get on the transplant list. We also need connections with others.
I hope I can contribute something valuable to the kidney community after spending these weeks in April on dialysis. I pledge to keep trying!
Continue reading part 3 of Karin’s journey: Day of Transplant Surgery
Today I received my new kidney, lovingly called, Croissant – Lisa.
My sister and I were driven to the hospital at 4:30am by our parents, Ulla and Michael. We were a strong team, and my father reminded us of the many trips the four of us had taken when Lisa and I were children. Conversation on the way into NY Presbyterian was light and the sun kept rising while we were approaching the huge complex of medical buildings.
Wearing blue paper masks, we all marched into the heart center which is where you register and wait together. My head leaned on Lisa’s shoulder when they first called her name, and she walked in bravely, together with our father. A few minutes later they called my name, and my mother and I followed.
Now followed hours of waiting with questions, IV placements, blood draws and consent signatures to get us ready for surgery that was going to take place at 8am for Lisa and three hours later for me. One of her kidneys was going to be removed and placed into my right iliac fossa (lower right abdomen/pelvis). Our surgeons were confident. Mine walked in stylishly outfitted in a suit and dress shoes, and I asked “Aren’t you dressed yet?” He answered, “I am dressed – PJs come on shortly.”
Before Lisa was given her sleeping potion, I had the opportunity to see her on the OR table and it brought tears to my eyes. Of course I had thought extensively about her gift to me, but never this concretely – this was tangible, palpable even. My little sister Lisa is going under, and being cut open, for me to survive.
She is my hero for life. She has always been extremely loyal and stubborn. She doesn’t give up and she loves big. I know that about her, and I also know she fights hard and pushes through pain. As she was lying on that table, she was beautiful. I wish I had taken a picture. She looked serene, even happy.
Back in my cubby, my mother and I kept waiting for my turn. I slept a little, and we talked a little. It was a nice way of waiting, and I appreciated my mother’s way of distracting me yet leaving me alone when I drowsed off.
When I was rolled toward the OR, my tears started again. I thought of Liv, my family and my life. I know the likelihood of mortality in these procedures is extremely low, but any surgery poses a risk. I don’t think it was that risk that made me teary-eyed though. It was the magnitude of the event and the many consequences that were all playing out in my head that caused the tears to flow: pain, graft failure, nausea, long hospital stay, cold OR, etc, etc.
On the table a few minutes later, I was treated so well by the nurses and anesthesiologists, who all addressed me as Dr. Hehenberger and gave me both respect and empathy. The Benadryl I had been given earlier, combined with the fentanyl they now infused, put me out almost immediately. It was many hours later when I woke up in the recovery ward with a kidney that already had excreted urine on the OR table! Croissant – Lisa had come alive inside my body, and I was delirious with joy.
I wanted to hug and kiss the world, and the doctors who came by all received my affections. Since I was lying down, I kept reaching for hands to hold and faces to smile at. My mask restricted me, but perhaps it was good to not show such a clownish smile to the world.
I am now facing four days of chemo light (thymoglobulin) and steroids as the induction therapy, while also getting my regular immune suppressants to make sure Croissant – Lisa doesn’t get rejected by my immune system. That is going to involve some side effects, such as higher blood sugars etc, but I am hoping I can keep that initial smile in my mind and push through the acute pain to eventually yield my goals, which near-term are to go home, kiss my daughter, hug my parents and other sister Anna, and toast Lisa – my hero.
Continue reading part 4 of Karin’s journey: The Gift
How do you thank someone who gave up a piece of themselves for you? How do you express gratitude for feeling alive again after a period of suffering enormous fatigue, nausea, fear and depression?
My sister and my father did this for me – they each gave up a kidney to save my life.
14 years ago, my father and I were on the table, and these fourteen years have enabled me not only to smile and hug my family and friends, but also to have a child of my own and start and build a thriving life sciences company that serves patients and promotes innovation.
This past week, my younger sister Lisa did the same for me. Her kidney came alive in my body immediately on the OR table and normalized my kidney values within two days of the operation. It is hard to describe my feelings and my energy levels other than as “hyper”.
I want to run, laugh, hug, scream and jump for joy. I want to bring joy to others, smiling to every person I meet, including the incredible staff at Columbia Presbyterian, led by the amazing Dr. Lloyd Ratner. He has assembled a team of surgeons, physicians, scientists, nurses, physician assistants (PA), technologists, social workers, occupational therapists, and other staff who work tirelessly under very hard conditions. They are heroes, together with the donors who give us recipients a second (or third) chance of life.
So what am I going to do with this gift?
I will live every day to the fullest, which doesn’t mean I will do as much as I can every day, but I will measure myself and take care of my new “baby” so that it can serve me as long as possible.
I will take care of my body by eating right, sleeping enough, exercising regularly and practicing mental health through meditation and mindfulness. I will be kind to myself when I feel tired, and I will be respectful to others and always keep in mind that the exterior of someone is not always a reflection of their inner self. I will cherish my friends who have stood by me through the hardship of kidney failure and dialysis.
I will continue to serve patients through my work. I will partner with great companies and leaders in academia to promote innovation. I will provide opportunities for my team to both grow professionally while also taking care of their families.
Above all, my life is dedicated to the family who saved me, and my own little family, whom I am raising with all of my heart. I appreciate each of my sisters, parents, brothers in law, nieces and nephews, and especially my daughter.
To my daughter, I want to show that life may not be a walk in the park – you need to fight for what you want – but it is beautiful. I want her to know that she will always be taken care of, and endlessly loved by, her Mamma.
Continue reading part 5 of Karin’s journey: Going Home
Going home from the hospital was, in many ways, the best experience, but it was also a scary one.
I got to hold my daughter, sleep in my bed, take a shower and eat what and when I wanted to.
However, the protective nature of the hospital and its personnel was lost, and it scared me a little.
Those wonderful nurses, the long line of doctors rounding each morning, even the food cart with its very mediocre yet nutritious food that was given to me on a tray. Do I actually miss this?
Now everything was up to me.
Taking my pills at the right time, measuring my weight and blood pressure daily, making my bed, and being social in a way I had not needed before.
All this took energy. Frankly, it gave me a little fear.
It is interesting since I am, in many ways, a control freak. I crave being in charge of my own actions and outcomes. Yet in four short days I had forfeited that responsibility and surrendered to the hospital.
It took me a full day, but on Day 6, which is Day 2 at home, I feel more myself again. Now I am already longing to drive myself, to be “back” fully.
My promise remains true, to myself and to my family, to take it slow. So my energy is going to be expended toward walks, conversations with my sister, story time with my daughter, and planning for a beautiful garden this spring!
Treat yourself with grace. Every day is different. Some days you can be a superhero and some days you can’t get out of bed. Both are equally beautiful and important.
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.