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!

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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

Lyfebulb, in partnership with Columbia University, presents a virtual education series, sponsored by Veloxis Pharmaceuticals, to address key topics of living from late-stage disease through the transplantation process and beyond. Providing informative patient education is key to improving the patient experience, health communications, and health outcomes.

This session discusses different areas of advances in transplantation including tolerance induction, bioengineering, biological markers, regenerative medicine, and artificial intelligence (Al). 

Engineering Tissues and Organs

The cells in the body create the tissue that make up our organs. The scaffold of each organ and tissue is the structure that the cells replicate on to create the fully formed and functioning tissue. And bioreactors are the chambers in which these components, combined with necessary regulatory factors that facilitate nutrient and oxygen availability to allow the cells to function, are combined to engineer new living tissue. 

With this understanding, researchers tried to create an anatomically correct jaw bone in a pig. First, they removed the bone, cleansed it of all cells and living tissue, which left the scaffold. Then they took stem cells from bone marrow tissue or fat tissue of the pig and added it to a bioreactor culture and the scaffold. After a few weeks, it became living bone. Then, this bioengineered bone was placed back into the pig to see how it integrated with the native bone over time. Over the span of 6 months, the bioengineered tissue and the naïve bone were nearly identical. 

In the human body, engineering tissues like whole organs is vastly more complicated. The lung, for example, has more than 50 cell types and a complex structure of airways and vasculature. There are 145 meters of gas exchange surface, which is half of a tennis court. With current technology and innovation, it’s not possible to engineer lungs, yet. 

But, because of the shortage of organs that are suitable for transplant, instead of growing new organs, trying to repair organs that are rejected is the near-term future of transplant innovation and research.  

This very intervention is being researched in lung transplant where the lung is placed on a ventilator and connected to the organ recipient’s blood flow for a few days to complete lung repair before it is put into the recipient patient. To test this, studies were conducted on weakened lungs that were out of the body for a considerable time, which leads to damage from blood loss. These lungs were connected to the patient externally using the method of rehabilitating the lung and after 24 hours the function of the lung dramatically improved. To determine the health of the lung, the pressure volume in the lung is tested to ascertain the quantity of much air flow.

Immune Tolerance

The immune system recognizes what is part of our body and what is not. There are proteins and carbohydrates on the surface of the organs of other people’s bodies that our immune system recognizes and tries to fight off when an organ is placed in the body for transplant. Research is being devoted into trying to reprogram our immune system so it doesn’t attack the transplanted organ and only attacks bacteria and viruses as it normally should. This is called immune tolerance. 

So, how does immune tolerance work? Our bone marrow determines what is recognized as foreign and what is not. When we are born, the immune system hasn’t created immune memory yet, which is required to remember infections we have been exposed to so they can be fought off quicker in the future. These memory cells have to be reprogrammed to not have immune recognition and then reject the organ. To do this, bone marrow cells of the donor can be transplanted along with the transplanted organ into the recipient to minimize this immune recognition of a foreign body. Those unique proteins and carbohydrates from the donor are now part of the recipient’s body and will not reject. 

In kidney transplant, there have been some studies done where kidney and bone marrow transplant were done together. Patients were able to stop immune suppression over time and they all developed immune tolerance.  

Liver transplant is the most effective organ to transplant that will create spontaneous immune tolerance as this is where bone marrow stem cells survive. Research is also looking at what are the cells and inflammatory markers that are characteristic of people that don’t reject their organs. Hopefully, this can be translated to other organs in the future. 

AI and Transplantation

There is technology being used that can predict future organ rejection. This AI technology is called AlloSure – a marker of donor organ injury and rejection. It is being developed to be used for all organ transplants, and currently is used in determining transplanted kidney health and function. Data is collected from the following results added together to predict, with 85% accuracy, if a patient will experience rejection present on a biopsy: kidney function at the time of biopsy, data history of rejection, antibodies against donor and DNA. The score determines whether the patient should be biopsied or not. A low value indicates a low probability of rejection, and a higher value where rejection is likely.

This technology would be used any time after the first 2 months and then quarterly after the first year.  Data is collected every year after transplant to predict long term outcomes of transplantation. In addition, there will be less need for conducting long term trials in the future for new drugs and interventions as outcomes can be accurately predicted. 

With advances in improving the shortage of lung supply, increasing regulatory collaboration, and improved transplant drugs, the future of transplant is bright!

Listen to the full webinar and learn more about these conversations and further research and information about life with transplant. This, and future webinars can be found on transplantLyfe.com/webinars.  

Panelists

  • Dr. Vunjak-Novakovic, Professor of Biomedical Engineering and Medical Sciences at Columbia University 
  • Dr. Griesemer, Professor of Surgery and Transplantation at Columbia, Head of Pediatric Renal and Liver Transplant.
  • Dr. Srinivas, VP of Digital Development and Clinical Integration at CareDx

Moderators

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Lyfebulb, in partnership with Columbia University, presents a virtual education series, sponsored by Veloxis Pharmaceuticals, to address key topics of living from late-stage disease through the transplantation process and beyond. Providing informative patient education is key to improving the patient experience, health communications, and health outcomes.

This session discusses three different areas of advances in transplantation including xenografts, islet cell transplants, and microbiotics. 

Xenograft

Organ supply remains the number one unmet need in transplantation. Pigs are the most appropriate donor animal for xenotransplants. These types of transplants have been performed on patients who are brain dead and cannot donate their organs. Because they are technically deceased, the FDA doesn’t weigh in on this kind of research, so the data can be used to justify future clinical trials in living humans. 

At NYU, a genetically modified pig kidney was put into such a patient to study how it would initially function in the human body. After 50 hours, there was no evidence of inflammation or rejection. In addition, two recipients received heart transplants from genetically modified pigs. Because of these recent experiments, interest has reignited for xenotransplantation, which is on the cusp of successful pig to human life-altering transplants.

So how are the pigs genetically modified? There are a number of companies that are gene editing the germ line, which means that the pigs have human genes permanently in their bodies and their offspring will as well. From this point, they can be easily bred for research purposes. They look like normal pigs; the only differences are that their cells produce some human proteins. 

Unfortunately, with xenotransplantation, there will still be need for immunosuppression therapy, because the human body has an even stronger immune response to the transplanted pig organ than another human. There is some research investigating how the immune response can also be modified genetically to reduce the response. 

Islet Transplantation

In pancreas transplantation, while the success rate is about 90%; there is risk of bleeding and other surgical complications. In order to reduce that risk, islet cell transplant was developed. This process involves taking the pancreas from the deceased donor, then taking the islet cells and infusing them into the liver of the recipient. They stay in the liver and produce insulin and modulate glucose levels. This type of transplant has been optimized for 20 years. Islets can provide long term insulin independence for patients however, immunosuppression for the patient is required.  

Researchers are attempting to develop a way to make islet cells out of embryonic stem cells to have a greater supply of cells for transplant. Some companies are engineering islets from human stem cells, but there is limited success. Islets engineered from human stem cells would provide an unlimited supply, but would require the same immunosuppression therapy as normal transplant. 

To circumvent the need for immunosuppression, using a pouch to immunoprotect the cells from the body of the recipient may avoid the need for immunosuppression. There is research being done in this space as well. 

The outcomes for islet transplant are about the same as whole pancreas transplant, with about 60% of patients being insulin independent after 5 years but, the surgery requires experience from physicians and requires patient’s adherence to be successful as any other transplant. 

Currently, the FDA has not approved islet cell transplant, so it is not reimbursable through insurance. Thus, often they are not able to be performed for patients. This issue requires legislative action to push FDA to approve islet transplant as the same as any other organ transplant to allow for insurance payments. The United States is the only country that is regulated in this way. 

Microbiotics

In intestinal transplant the microbiome in the gut has been shown to be tied to rejection episodes. The intestines are full of bacteria, both commensal (good bacteria), and pathogens, (bad bacteria). There are bacteria that are vital to our survival; some of which help us break down foods, and some release chemicals that are necessary for the body’s functioning. This ecosystem of bacteria is called the microbiome. The interplay between the microbiome and the immune system is tied because an imbalance of the microbiome can cause an increase in immune cells or T cells, causing the body to be in an inflammatory mode versus a regulatory mode. One area of recent research is trying to determine whether rejection is due to the change that occurs in the gut bacteria populations when they are introduced to the recipient’s body’s gut bacteria. 

There are immune cells that are specific to the bacteria that live in the gut and, when the immune cells die off along with the bacteria from the donor’s gut, in the recipient’s body, this can cause an imbalance and lead to rejection. This has been studied in liver transplant. 

An overall decrease in diversity of bacteria, meaning fewer different types of species, is associated with inflammation. Rejection can be potentially modulated by restoring the balance of good and bad bacteria. It must be a targeted treatment of introducing certain foods and compounds that foster the growth of certain bacteria, which can then change the body’s immune response. 

The next webinar session will focus on research into biotechnology and artificial organs with experts in the field. 

Listen to the full webinar and learn more about these conversations and further research and information about life with transplant. This, and future webinars can be found on transplantLyfe.com/webinars.  

Panelists

  • Dr. Griesemer, professor of Surgery and Transplantation at NYU, Head of Pediatric Renal and Liver Transplant 
  • Dr. Piotr Witkowski, Director of the Renal and Pancreas Islet Program at University of Chicago
  • Dr. Joshua Weiner, Assistant Professor of Surgery at Colombia, Head of Intestinal Transplant and an expert on microbiosis

Moderators