Living Transplant: Patient Stories | Organ Donation | Medical Experts

In the second and final part of A Heart Away From Home, guest Heather Lannon explains how she landed on her PhD research question: how is home connected to the transplant journey? After promising Jamie she would do her PhD, Heather talks about what it was like to jump into her research just two months after his passing (she blames “widow brain”), the pros and cons of combining the personal and the academic, and how she became a participant in her own research study. Part two of this interview delves deeper into the caregiver experience and examines the hardships and resilience of patients who need to relocate for transplant. Don’t listen to this episode without listening to part one!  

In this episode: 

Autoethnography is an approach to research and writing that seeks to describe and systematically analyze personal experience in order to understand cultural experience. This approach challenges canonical ways of doing research and representing others and treats research as a political, socially-just and socially-conscious act. A researcher uses tenets of autobiography and ethnography to do and write autoethnography. Thus, as a method, autoethnography is both process and product. (Read more) 

Caregiver supports  

·       Ontario Caregivers Organization  

·       HeartLinks Transplant Support Group (Toronto General Hospital) 

The Heart Pump Blues - Written and Performed by Jamie Wilkinson 

We’re back to hearts this week with Heather Lannon, Outreach Coordinator for the Centre for Living Organ Donation, PhD candidate and caregiver. Heather recounts her transplant experience which began when her and her husband Jamie relocated from St. John’s Newfoundland to Toronto in the hopes of receiving a new heart for Jamie. With an unbeatable sense of humour, Heather offers an in depth look at the caregiver experience. From honeymooning in Toronto General to welcoming an LVAD into the family, Heather’s story is a unique reminder of human resilience. 

In this episode:

Transposition of the great arteries (TGA) is a serious but rare heart defect present at birth (congenital), in which the two main arteries leaving the heart are reversed (transposed). Read more. 

The Mustard and Senning repair are two similar operations for TGA. Each is named for the surgeon who first performed the operation. In both, the surgeon creates a two-way baffle in the top part of the heart. This baffle serves as a bridge between the two sides of the heart. In a Senning procedure, the surgeon uses the patient’s own tissue to create the baffle. In the Mustard procedure, a synthetic material is used. Both are called “atrial switch procedures” because there is a baffle through the heart’s top part, or atria, which allows the blood to reach the ventricles. Read more.

VAD: A ventricular assist device (VAD) — also known as a mechanical circulatory support device — is an implantable mechanical pump that helps pump blood from the lower chambers of your heart (the ventricles) to the rest of your body. A VAD is used in people who have weakened hearts or heart failure. Read more. 

Jamie, Heather and Lennon 

In this special episode of Living Transplant, Courtney and Brittany host Explore a Career in Transplantation, part two of the Ajmera Transplant Centre’s Virtual Open House (May 19, 2021). Dr. Kathryn Tinckam, UHN’s Physician-in-Chief, Dr. Blayne Sayed, Liver Transplant Surgeon, Dr. Cynthia Tsien, Transplant Hepatologist and Education Director, and Joanne Zee, Senior Clinical Director of the Ajmera Transplant Centre, answer audience questions including what led them to the field of transplant, what keeps them motivated, and the most rewarding and memorable moments in their careers so far.  

In Living Transplant’s first heart-focused episode, Courtney and Brittany sit down with heart function (not “failure”!) fellow, Mali Worme, and heart transplant recipient, Vino Ramachandran. Diagnosed with dilated cardiomyopathy 10 years ago, Vino walks us through what it was like to go from a “fairly normal life” to watching his health “fall off a cliff.” As Vino recalls some of the more challenging moments of his journey, including his wife being 8 months pregnant with their first child at the time of transplant, Mali provides insight into the technical aspects of Vino’s journey, what she learned, and why she loves her work. Also in this episode: common misconceptions about heart failure and transplant, celebrating milestones in the CVICU, and pre-surgery ginger ale cravings.   

In this episode: 

CVICU: Cardiovascular intensive care unit 

Dilated cardiomyopathy is a disease of the heart muscle that usually starts in your heart's main pumping chamber (left ventricle). The ventricle stretches and thins (dilates) and can't pump blood as well as a healthy heart can. Read more. 

Decompensated heart failure is defined as a clinical syndrome in which a structural or functional change in the heart leads to its inability to eject and/or accommodate blood within physiological pressure levels, thus causing a functional limitation and requiring immediate therapeutic intervention. Read more. 

LVAD: A ventricular assist device (VAD) — also known as a mechanical circulatory support device — is an implantable mechanical pump that helps pump blood from the lower chambers of your heart (the ventricles) to the rest of your body. A VAD is used in people who have weakened hearts or heart failure. Although a VAD can be placed in the left, right or both ventricles of your heart, it is most frequently used in the left ventricle. When placed in the left ventricle it is called a left ventricular assist device (LVAD). Read more. 

Become a registered organ donor at [beadonor.ca]BeADonor.ca

Jeff Robertson, founder of the PKD Foundation of Canada, joins Courtney and Brittany to talk all things polycystic kidney disease (PKD). Raised by a mother with PKD and a father juggling the roles of husband, caregiver and parent, Jeff learned firsthand what it means to live with chronic disease, as well as the life-altering power of transplant. With frank authenticity, Jeff talks about the ebbs and flows of fear that come with a hereditary disease in the family, why he started the PKD Foundation, mental health, and the importance of sharing your story. Also in this episode: PKD myth busting, what the resilience of chronic disease patients teaches us about coping during the pandemic, and the significance of the game Operation.  

Learn more about the PKD Foundation of Canada 

Established in 1993, the PKD Foundation of Canada has now positioned itself as a nation leader of clinical research and fellowship funding in the field of PKD. From the first research grant awarded in 1999, the PKD Foundation of Canada has set up chapters and support groups across the country, built an expansive and passionate volunteer network, and connected with PKD groups around the world to support our most notable fundraising event – the Walk to END PKD. Read more.  

In this episode: 

Polycystic kidney disease (PKD) is an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time. Cysts are noncancerous round sacs containing fluid. The cysts vary in size, and they can grow very large. Having many cysts or large cysts can damage your kidneys. Read more. 

This episode was recorded in March 2021

Transplant pharmacist, Dipika Munyal guides Courtney and Brittany through the complex world of anti-rejection and immunosuppression (are these….the same thing? It’s like I learned nothing). From libido to infection to the effects grapefruit has on medications, Dipika explains the reasoning behind medications for transplant recipients, common side effects, and why it’s not all bad. Also in this episode: the golden rule of anti-rejection meds, taxes and drug coverage, and the future of transplant medicine. 

In this episode, Courtney and Brittany are joined by Toby and Bernadine “Bernie” Boulet, the parents of Logan Boulet. In 2018 Logan became an organ donor after he was injured in the tragic Humboldt Broncos bus crash. Logan inspired hundreds of thousands of Canadians to register as organ donors, resulting in an unprecedented increase in donor registration, a movement that came to be known as the Logan Boulet Effect. Toby and Bernie share their story with our hosts, discussing how Logan arrived at the idea of organ donation, saying goodbye at the hospital, and how they keep memories of Logan alive today. Also in this episode: what the Boulets have learned about organ donation and the transplant community since becoming advocates three years ago, how and why you should have the conversation about organ donation, and Green Shirt Day 2021.  

In this episode:

Register to be an organ donor: https://www.beadonor.ca/campaign/teamUHN

The Logan Boulet Effect & Green Shirt Day 

Diagnosed with lupus in her early twenties, Jennen Johnson’s road to transplant was a windy one. With humour and authenticity, Jennen dives into the details of her story exploring her denial and eventual acceptance of kidney failure. From explaining transplant to her 12-year-old daughter, to searching for a living kidney donor, to intimacy pre- and post-transplant, Jennen's story is an excellent reminder that everything happens for a reason. Also in this episode: the joy of peeing with your new kidney, Jennen gives a sneak peek at her upcoming project with the Centre for Living Organ Donation, and astrology tangents.   

Courtney and Brittany are joined by kidney transplant recipient and philanthropist, Salah Bachir, his husband, Jacob Yerex, and UHN’s Physician in Chief, Dr. Ed Cole. They discuss Salah's seven years on dialysis prior to transplant, the inspiration for the Bachir Yerex Family Dialysis Centre, and what Dr. Cole sees for the future of kidney transplantation and dialysis. Also in this episode, a brainstorming session about the concept of an anonymous donor line, Courtney and Brittany love astrology, and Salah reveals the secret to a nightshift nurse’s heart (spoiler alert, it involves a lot of fried chicken).  

In this episode  

Salah Bachir CM, O.Ont 

Salah Bachir is the president emeritus of Cineplex Media, Member of the Order of Ontario, and the Order of Canada. He is a founding member of the Canadian Foundation for AIDS Research, a philanthropist whose fundraising leadership has been recognized with named buildings at St. Joseph's Hospital and The 519 Community Centre, as well as a tireless advocate for LGBTQ2S rights and two-time Pride Grand Marshall. 

Jacob Yerex - Canadian Artist jacobyerex.com  

Dr. Ed Cole - Physician-in-Chief Dr Charles H. Hollenberg Chair in Medicine  

https://www.uhn.ca/PatientsFamilies/Search_Doctors/Pages/doctor_detail.aspx?doctor=55  

Kidney Paired Donation Program  

https://www.blood.ca/en/organs-issues/living-donation/kidney-paired-donation-program  

The Bachir Yerex Family Dialysis Centre 

https://supportstjoes.ca/bachir-yerex-family-dialysis-centre-2/  

A Gift of Life for Valentine’s Day 

https://www.uhn.ca/Transplant/Living_Donor_Program/Centre_for_Living_Organ_Donation/Their_Stories/Pages/Joanne_Kearney_Brendan_Cahill.aspx

Courtney and Brittany sit down with living liver donor, Melissa Sidhu to talk research ethics, biliary atresia, and the privilege of good health. With honesty and humour, Melissa talks about her brother’s reluctance to accept her as a donor, her fear of post-donation depression, and the challenges of having a mother who knows too much about surgery. Warning: This episode contains excessive laughter.  

This episode is dedicated to Dr. Gary Levy, whose tireless efforts have saved countless lives, Dr. Les Liy for being my brother's keeper, Dr. Mark Cattral for saving my brother’s life, my transplant coordinator Julie Vicencio, who carried me through the entire donor process, and of course, in memory of Dr. Ronald Heslegrave, whose contribute to research and medical ethics will continue to serve humanity forever.  

In this episode  

Man donates part of his liver to stranger 

https://www.thestar.com/life/health_wellness/news_research/2010/12/10/man_donates_part_of_his_liver_to_stranger.html#:~:text=Two%20sections%20of%20the%20left,sound%20physical%20and%20mental%20health. 

Tinzaparin is an anticoagulant. It works by blocking certain natural substances in the blood that cause clotting. 

Living Donor Circle of Excellence Program 

The financial hardships associated with living organ donation still remain to be a major disincentive for many donors. Although there are initiatives and programs to compensate for some out-of-pocket expenses, most employers haven't established policies to provide coverage for lost wages. CST's Living Donor Circle of Excellence in collaboration with the American Society of Transplantation aims to eliminate the financial costs of living organ donation by recognizing companies who support living donation through providing lost wages. Read more: https://www.cst-transplant.ca/circle-of-excellence.html