I chatted with Petter Björquist, one of the finalists for the CSL Behring Transplant Innovation Challenge, about his novel innovation for the future of transplantation.
His company, VERIGRAFT, is developing a method of creating personalized organs from donors without the requirement of immunosuppression, avoiding tissue rejection, infection, other side effects, and the high price tag associated with typical transplantation. Currently, they are developing non-vital organs, such as blood vessels and nerves. It is a two-step process that first takes off the donor’s cells – decellularization. This leaves an empty tube, which is the 3D structure scaffold of a blood vessel, for example. Yet without the cells, it has no identity. The second part of the process gives the organ an identity again – personalized with the new patient’s cells and other noncellular material. What’s unique about this innovation is that it only requires 50mL of blood to be incubated with the blood vessel scaffold for about a week. Then, the new organ is ready to be transplanted into the patient.
The inspiration behind this research
I asked Petter what his inspiration and driving force behind this research was and what propels the continued advancement.
Although he has no direct connection to transplant (He worked in the field of cell therapies for 25 years and saw many ill patients.), Petter sees the opportunities and the significant challenges for those suffering and in medical need. He often receives emails from patients who are hoping to be cured of their disease. They are his motivation.
“This is the best job in the world – it’s a scientific challenge and I’m also working towards solving patients’ problems,” Petter said. He added that being a finalist in the innovation challenge was an incredible experience, despite not actually winning.
As we know, performing research is very expensive. It requires hard work from many individuals, material consumption, clinical phase regulation, and administrative burdens, which all have to be financed. Although he didn’t win the Innovation challenge, the opportunity to share his innovation with a larger transplant-research community and potential investors helped him tremendously. He was also able to benchmark his innovation against others in the field who gave him useful input and asked questions that challenged and supported his business model. For him, coming in contact with the large ecosystem of the transplant community was truly a pleasure.
The Future of VERIGRAFT and personalized transplants
I asked Petter how he hopes this innovation will advance the health of patients, and his answer was quite simple: He hopes it will change people’s lives.
In the eight years since starting his research and company, it has already advanced so far – currently testing the solution in patients and examining a range of diseases to provide viable therapeutics. Petter hopes this innovation method ultimately changes the lives of people and allows them to have a much better quality of life. Those that are significantly hindered in their daily activities are in desperate need of health improvement. This innovation will hopefully provide just that.
To advance, Petter wants to see positive results from the current ongoing patient testing, before he expands the company, clinical trial sites, and business connections beyond Europe and into the US and Asia. The pipeline for the clinical testing and expansion for other indications will continue for the next three to five years. And, Petter’s long-term goals are to partner with a larger company that can help speed up development of these products and innovations and to expand this technology into larger vital organs. The current research is laying the groundwork for anticipated regulatory hurdles and securing financing from a positive track record with the current study outcomes.
Mr. Kushnick started a thirty plus year career in film and video production in 1979 having moved to Los Angeles upon graduating college. His involvement included various roles in production for TV commercials and early music videos. In the mid 1980’s he returned to New York to work for Sony Music specializing in video marketing tools including commercials, music videos, and marketing videos.
Questioning the countries environmental crisis and limited energy resources Daniel made a career change in 2010. He began working for Honeywell’s energy saving division, working as a manager, for a New York State energy program, to help low-income individuals save on their energy bills.
Daniel was diagnosed with Poly-cystic kidney disease in his late twenties. The disease progressed and in 2018 was diagnosed with stage five chronic kidney disease. Preparing for dialysis he signed up with the Rogisin Institute’s program to train for home hemodialysis. Six weeks into the training, after a social media campaign to find a donor, someone stepped forward and in March of 2019 he had a successful transplant operation.
Since the operation, having retired due to the transplant and COVID, he has been seeking volunteer opportunities including becoming a mentor for the National Kidney Foundation’s Peer Mentoring Program and joining a local government environmental committee.
It is Mr. Kushnick’s desire to help other kidney disease patients deal with the issues of dialysis and those in need of a transplant to navigate the process. Daniel is looking too expand his volunteer platform to a wider audience to increase awareness of the needs of those afflicted with kidney disease.
This is a virtual education series in partnership with Columbia New York Presbyterian, sponsored by Veloxis Pharmaceuticals, that will address key topics of living through late-stage disease through the transplantation process and beyond.
This session covered topics such as living with end-stage renal disease (ESRD), how to prepare for dialysis and transplant, and how dialysis and transplant affect the quality of a kidney disease patient’s life.
ESRD and Chronic Kidney Disease
As much as 15% of adults have chronic kidney disease, which is roughly one in every seven people. Just last year, 150,000 patients started treatment for kidney disease.
It is important for patients with kidney disease to begin discussing and learning about the possibility of dialysis and transplant as early as possible. The progression of the disease is variable between patients, but when someone begins to show symptoms of high potassium levels and fluid retention, it is time to consider starting dialysis. At this time, the kidney is functioning at about 20% or less capacity.
Dialysis for Kidney Disease
Dialysis helps those with kidney disease by cleaning or filtering the blood artificially when the kidneys are not able to perform the function properly. There are different types of dialysis – hemodialysis and peritoneal dialysis. Hemodialysis is done at a center, where blood is removed from the body and clean blood is returned through the veins. This is the default method of dialysis, even though most people would prefer the convenience of home care when receiving dialysis.
Peritoneal Dialysis
Peritoneal dialysis allows for that convenience. During peritoneal dialysis, fluid is filtered into the body through the stomach which circulates and cleans the body of toxins, Then, the fluid is extracted along with the toxins. This method allows for flexibility with travel and daily functions and can be done at home during the night. However, this dialysis does require some training and assistance from a caregiver so the patient must have a certain level of responsibility and independence. Furthermore, it is completed seven days a week. This type of dialysis is only done for about 10% of patients in the United States, while in other countries, it is the primary modality. There is no evidence to support one type over the other, but peritoneal dialysis is gentler on the body and does not cause low blood pressure or fatigue.
Normal life can be sustained while on dialysis. That being said, children and busy adults may not be the best candidates, because hemodialysis can interfere with school and work.
Dialysis and Transplantation
When it comes to transplantation, about one-third of patients are listed for a transplant before dialysis. It is important for medical professionals to begin asking patients early if they have potential donors and for patients to begin considering all avenues.
Educating patients about both transplantation and dialysis at the same time helps minimize the sense of feeling overwhelmed and/or potential denial when the patient is facing difficult decisions in their care, but transplantation is the ultimate goal for those with end stage renal disease.
In the long run, transplantation is the best option for quality and extension of life for any patient that is eligible. The long-term effects of dialysis aren’t great – especially for those in kidney failure due to diabetes. These patients have a particularly negative experience and benefit greatly from transplantation. For patients who are hesitant, education is extremely important.
Advancing the Treatment for Kidney Disease
The good news is that the future of kidney disease is bright as there are a number of new drugs available to slow kidney disease. This is an exciting time for research into wearables, as well as stem cell therapies. Thankfully, there is a lot of hope for the nephrology community.
View past webinars in this series and register for future webinars at transplantlyfe.com/webinars.
Panelists:
Syed Ali Husain, MD – Assistant Professor of Medicine at Columbia Vagelos College of P&S
Maya K. Rao, MD – Associate Professor of Medicine at Columbia Vagelos College of P&S, Director of Chronic Kidney Disease Program
Gerald Appel, MD – Professor (Tenured) of Medicine at Columbia Vagelos College of P&S, Director of Glomerular Disease Center
Moderators:
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
The transplant field is filled with many heartbreaking and inspiring stories. Some linger deep in the soul and provoke action. This is the situation my friend, Denise, found herself in. Denise is a heart-transplant recipient herself who, in the middle of her own personal transplantation experience, started the HeartFelt Help Foundation.
Having been sick her entire life, the medical world wasn’t new to Denise. Prior to her lifesaving transplant, Denise had been shocked multiple times, had 3 ICD’s, and had more hospital stays than she could keep track of. Despite knowing her situation would almost certainly end in transplant or death, she believed a heart transplant was something that wouldn’t happen to her.
In December 2017, Denise was given the news by her doctor that without a transplant she wouldn’t survive more than a year. And so Denise went home and planned her funeral.
She selected music and spoke to her pastor. And, upon finalizing her last wishes, Denise endured a ventricular tachycardia attack.
Denise was rushed to the hospital via ambulance, and after multiple hospital transfers, she arrived at Stanford where she would wait until a heart became available.
Three weeks after being admitted, at 11:30 pm on January 30, 2018, a call came. There was a heart that had become available, and while it was high risk, it was Denise’s if she chose to accept. She called her husband on the phone and they discussed this offer, which she describes as feeling more like a real-estate transaction than being given a second chance at life.
The surgery took a long 12.5 hours. Due to internal bleeding, Denise had a follow-up surgery later that night, and again a week later. She faced infection, both types of rejection, and her post-transplant hospital stay ended up being far longer than the stay she faced prior to receiving her new heart.
In April of 2018, Denise returned home, and in July, she began rehab and the slow process of learning how to live again with a new heart. As she recovered, Denise made a vow to live as though her donor was watching. And in the midst of rehabilitation and her own complicated recovery, something shifted.
In a waiting room, she overheard a conversation where someone would be moved down the transplant list since they could not provide adequate funding for post-transplant housing. And, Denise, a firecracker of a woman still recovering from her own complicated surgery, knew deep down in her soul that this wasn’t ok, that no one should be denied lifesaving organs because of their financial or housing status, and that she would be the one to do something about it. Denise became the difference she longed to see in the world as she interrupted the meeting, in typical Denise fashion, and put her foot down, insisting she would find a way to gather the funds so this individual could have a safe place to stay post-transplant and not be moved down the list.
Enter the Heartfelt Help foundation. It began as an effort to raise money for one person’s post-transplant housing. But the lack of safe and affordable transplant housing close to major transplant centers doesn’t just affect one person, and once the fire had been ignited to make a difference, there was no way to simply turn it off. In 2020, Heartfelt Help Foundation became an approved non-profit organization with a focus on supporting transplant patients in California and providing post-transplant housing close to the hospital.
I could see the emotion on Denise’s face as she spoke, and her stories of those she has helped through her organization translated into pure joy. I felt it, too, as she explained that nonprofits are there to fill in the gaps and provide a safe place for people who have nowhere else to turn.
“Transplant is a new life,” Denise said. “And, it shouldn’t create additional worry in life.”
I asked Denise how, in the middle of her own struggle, she continues to reach out and provide for others, and she told me that it is from others that she draws her inspiration. Her sense of value comes from serving others, and in the end, it doesn’t matter what she has but how many lives she has been able to touch.
Tomorrow isn’t promised. And, if there was ever a time to make a difference, it’s now. Denise is a shining example of drawing from personal pain to create beauty and building a life full of thriving for herself and others post-transplant.
| Just a dude with dialysis problems. End Stage Renal Disease survivor, TWO time transplant recipient and FORMER NxStage Home Hemodialysis Patient. Second transplant occurred on July 23rd, 2011. Returned to dialysis, October 2018. Third transplant on November 7th, 2020. I talk about my experiences with dialysis and transplants all while trying to live a “normal” life. From a young man to a middle aged dad, insight and thoughts on life, love and living with ESRD – tinged with humor. |
NEW YORK, Oct. 13, 2021 /PRNewswire/ — Lyfebulb, a patient-empowerment platform that bridges the gap between its patient communities and the healthcare industry, today announced that Jeffrey Yang has joined the executive team as its Chief Technology Officer. Additionally, the company hired Sarah Hostyk, Director of Digital Products, as a key leader in the digital team.
“We are thrilled to welcome Jeff and Sarah to Lyfebulb,” said Karin Hehenberger, MD, PhD, CEO of Lyfebulb. “With our launch of TransplantLyfe (www.transplantlyfe.com) this year, we are leveraging our clinical, patient-centric orientation into the digital health space. This announcement is one step of many in launching a suite of digital platforms where patient communities can connect, inspire each other and educate themselves.”
Jeffrey brings deep technical and management experience to the Lyfebulb team. Jeffrey spent the past 20 years working with early-stage companies and helped launch over 50 companies and products. He founded Arabella LLC, a digital product agency, in 2011, which was acquired by Roman Health Ventures in 2018. As a specialist in building product and engineering teams for early-stage companies, he has worked with some of the most innovative healthcare companies such as Oscar Health, Ro, and Calibrate. Jeff received his BS in Computer Science from Carnegie Mellon University.
Sarah has spent her career building, growing, launching and iterating tech products and startups. Prior to joining Lyfebulb, she was the Founder, CEO and Product Lead of two tech startups in the health, wellness, fitness and productivity spaces, WorkStrive and Place Tempo. Prior to that, Sarah worked simultaneously on both the business and engineering teams (leading Software QA) for consumer and SaaS enterprise tech startups in Boston, that also catered to healthcare companies. Sarah graduated Magna Cum Laude from Appalachian State University with a BS in Advertising and Entrepreneurship.
“It is refreshing to find a company that combines a commitment to a deep understanding of patient journeys with a desire to innovate and digitize that clinical knowledge into tools that allow patients to actually help each other. I am eager to jump in and accelerate Lyfebulb’s mission of reducing the burden of living with a chronic disease by translating patient insights into actionable digital products,” concluded Jeff Yang, CTO of Lyfebulb.
About Lyfebulb
Lyfebulb is an innovation accelerator that bridges the gap between patient communities and the healthcare industry by working directly with patients and care partners to generate insights and build new solutions to reduce the burden of living with chronic disease. Lyfebulb operates across 11 disease states and counting. See Lyfebulb.com, TransplantLyfe.com, Facebook, Twitter, Instagram, LinkedIn, and Karin Hehenberger LinkedIn.
Contact:
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210
Email: karin@lyfebulb.com
Hey y’all! I’m a liver transplant recipient, wife, adoptive mom, and chronically ill human, blogger, and podcaster. After a diagnosis of autoimmune hepatitis in 2005, I received a life-saving liver transplant that same year. I love talking with anyone in the transplant, mental health, or chronic illness world and help communicate their stories. I use my platform, The Bonus Years, to help bring hope to the hard. I can’t wait to connect with you!
The first thing I noticed when I sat down with Amanda was her friendly and easy going personality. I recognized the tiredness that comes along with fighting for your life etched into her features – it was the same look I had worn for so many years – and yet she was eager to engage and converse with me. Her goal, she said, was to help people.
We’re living in the middle of a pandemic and this, Amanda reminded me, will only add to the number of people receiving organ transplants. She has a wonderful support system but not everyone has received the same support she has, and Amanda said if she can be part of the village to someone else that she has created for herself, it would make her entire experience worth it.
Amanda received her first heart transplant at 15. While other kids her age were worrying about prom and which boy liked them, Amanda had bigger things at hand. Taking multiple immunosuppressants a day, avoiding germs, staying compliant with her treatments, it all made Amanda fit in less with her peers and more with the adults in her life. Transplant causes one to mature, quickly, and this is something Amanda experienced firsthand.
When talking about her experience with transplant, she was quick to reveal that one of her biggest struggles throughout the entire process was that of dealing with her mental health. The entire body is analyzed prior to and post transplant and yet mental health is an area often overlooked.
“I knew I needed a therapist, so that’s when I got one,” Amanda states, and it’s a sentiment I fully agree with. Transplantation is a process that takes a toll not only on the physical body but also the mental one, but there is little to no support for this invisible battle. And Amanda says she feels there should be greater emphasis put on the mental health journey following transplant.
She is currently back on the list, this time for a new heart and kidneys, despite doing everything right. She was compliant with her treatment, took all the medications prescribed to her, and yet the blow of knowing this failure of her organs took place as a result of the medication prescribed to save her life, she says, is her current stand out moment of the entire process.
Despite current struggles, Amanda looks back on her transplant as the biggest gift. Her overall experience has been incredibly positive, and her heart provided her with the opportunity to graduate high school, attend college and study abroad for a semester. She is an amazing chef who has worked with transplant patients regarding their diet and in hospitals hoping to make a change in the hospital menu we all love to hate. She works with her local organ procurement center, is the spokeswoman for the national heart association and records an amazing podcast called ‘Unfiltered survivors”.
I asked Amanda what inspires her to keep going and she said, “Why not?” It’s as simple a sentiment as they come, and yet those two words leave a profound impact. Amanda’s desire to help others penetrates through all that she does, and she says it is the driving force behind her fight.
“It’s all worth it,” Amanda told me, even in the midst of her current struggles. The pain, the struggle, the agonizing waiting period and the unexpected weight it imprints on both the mind and body, it’s worth it. Life itself is the most beautiful gift, a reminder I, too, find myself in need of often. It can be so easy to get swallowed up in your own journey, and I admire Amanda’s ability to keep sight of the bigger picture.
As our meeting together winded down, I asked Amanda if there was anything else she wanted to say while she had the floor. She said she credits TransplantLyfe to a lot of her success, and if this was available to her years ago she might be in a very different place now. “Put it all out there,” She said, “And use all the resources available to you. We have created this village that is so full of love and support, don’t hesitate to lean into it.”
You can connect with Amanda on TransplantLyfe: https://transplantlyfe.com/profile/ChefAmanda
Find her on social media: https://www.instagram.com/chefwithaheart/
Or listen to her podcast: https://unfilteredsurvivors.com/episodes/
In 2017 my life was saved by a stranger through the miracle of organ donation after my liver was destroyed by an incurable autoimmune disease called autoimmune hepatitis type 2.
This wasn’t the first time I had come close to the edge, though. Depression and mental illness have been part of my battle and journey to survive after being given my life-altering diagnosis at 17.
A doctor told me I had an incurable disease that had caused stage 4 cirrhosis (end-stage liver disease). I would be on medication (including steroids) for the rest of my life. I would never be able to have children. I would never be able to get life insurance. I was told not to drink, and by 30, I would need a liver transplant, or I would die.
This diagnosis devastated me. The life I had planned out was now obsolete due to the medication I would be on. The chances of me having a family and an everyday life were gone. So as I left the hospital that day, I decided I would try never to have regrets. ‘Carpe Diem – Seize The Day – Live every day as if might be your last, became the force that kept me going through the years that followed.
The symptoms of the disease combined with the side effects of the medication led me to massive weight gain and the onset of anxiety and depression. As my liver was unsavable, I decided to embrace life and lived a rather hedonistic existence, not caring if I lived or died. I believed I was intrinsically worthless, broken and a failure.
I wasn’t worth saving, and so a transplant wouldn’t happen for me. I didn’t deserve one.
But by 15 years later, at the age of 32, I had started to change my mind, and I didn’t want to die. I realised that I shouldn’t have been told what I was, the way it was. I should have had support. Things could have been different. I wanted things to be different. I made a vow.
I will not stop until children grow up knowing about organ transplants, and organ donation is the norm, not out of a legal law, but out of choice.
“My life was saved by a young lady who died of brain stem death. I don’t know if she had chosen to be an organ donor or her family made that decision. But I have a rare blood type, and without their choice, I could quite easily be dead.
I can never thank her or them.
Instead, I will aim to help reduce the shortage of organs available by working to improve education.”
My first children’s book, available on the Kindle is called, ‘Lucy’s Liver Transplant – A Story About Organ Donation’ and is now in 8 languages.
Manish is a 28-year-old PhD researcher and lives in India. He suffered from FSGS/Alport Syndrome, that led to progressive chronic kidney failure. Thankfully, Manish had a kidney transplant in December 2020 after his father donated his kidney to him. The suffering finally culminated into a blessing! He is enthusiastic about creating awareness and support as well as educating rare disease, kidney disease and transplant communities. He is an avid health blogger and has recently started Doting Beans, an online awareness and support blog/platform for kidney disease patients and transplant recipients. Manish also supports initiatives such as organ donation and mental health awareness. He is associated with the Organization for Rare Diseases (ORD) India as a rare disease advocate and Zifcare, India as a mental health ambassador. In addition, he is a patient ambassador at Alport Syndrome Foundation, USA and research network volunteer with Kidney Research UK. Through his journey, Manish has realized the importance of accurate & timely diagnosis and need to develop effective methods for treating rare and chronic kidney diseases. He envisions to implement this through his prospective plans of a research career in the field of Bioengineering.