Once viewed as a last resort for individuals living with organ failure, transplantation is rapidly becoming the preferred treatment of choice for a variety of diseases. There has been a transformational shift in thinking about what constitutes post-transplant success with more attention than ever being given to quality of life.
Dr. Tom Blydt-Hansen knows transplantation well. He has spent the last 20 years of his professional career caring for young patients living with end-stage kidney disease who require transplantation. He has worked tirelessly to improve the outcomes and experience of recipients, becoming a leader in transplant research on a local and national stage. As Director of the Transplant Program at BC Children’s Hospital, Dr. Blydt-Hansen is honest about the complexities that exist for recipients and how research is working to find solutions.
What unique challenges exist for pediatric and adolescent transplant patients?
Despite their health complexities, children and adolescents who have received transplants still experience the same developmental transitions and age-related challenges as their peers. However, their transplant status creates additional health considerations. For example, changes in drug metabolism related to puberty can pose a higher risk for things like rejection. Grappling with autonomy and identity in the confines of a strict medication and treatment regime can be a struggle for youth and their families. Families need additional support as well to cope with medical problems and to help their children develop autonomy in care and decision-making.
It is a sobering reality for patients when they realize that transplantation isn’t a cure. Essentially, we have replaced one chronic condition for another – albeit with greatly improved quality of life. Nevertheless, there is the burden of life-long medication, associated side effects, periodic complications and the pervasive threat of graft failure. The willingness to comply with treatment plans and take medication can make the difference between health and transplant rejection. Helping young people adopt a positive and proactive view of living with their transplant is critical to their success. More than ever before, researchers are recognizing the role mental health plays in this equation.
What do you find so compelling about transplant medicine?
I still view transplantation as one of the “miracles” of medicine. The transformative powers of transplant cannot be underestimated. To witness a child, whose own kidneys have failed, start to make urine and become free from the symptoms of kidney failure is compelling. It is life changing for families to become free of the burdens of dialysis care. It is humbling to accompany our young people and their families on the journey back to better health.
During your time in the field what have you observed to be the greatest advances in transplant medicine?
In some ways, progress has been frustratingly slow. For the most part, we are using many of the same medications to prevent rejection as we were when I started training. What has changed is our understanding of how to use these medications more effectively and to individualize treatment to each person. This has been helped by better monitoring and attention to the long-term effects of treatment and a shift toward a rehabilitation and quality-of-life focus as our goal after transplantation.
More recently, there is great promise of some new therapies that will shift our approach to treatment and have a significant impact on post-transplant care for patients. We are looking at how best to tailor an optimal immune system for each patient through “cell therapies” and new “biological” treatments that work by helping the immune system adapt to the transplant. It also includes the ability to monitor the transplanted organ with less invasive tests, instead of biopsies. I hope that we will be able to move some of these exciting advances into the clinic in the next few years.
What role has BC research played in the evolution of transplant medicine?
We are fortunate that BC has such a great wealth of expertise in transplant research, with many of our local researchers recognized nationally and internationally for their contributions to transplant science. With the support of government and BC Transplant, there has been a substantial expansion in the access to certain types of organ donation, including donation after circulatory death and strong support for living donor transplantation.
Local organizations such as the Transplant Research Foundation of BC, the Addison Fund, BC Children’s Hospital and Children’s Organ Transplant Society have played a key role in advancing research in this Province and enhancing patient care.
At BC Children’s Hospital, we are very proud of the research infrastructure we have built over the last several years. Collectively, we collaborate with and lead several national and international research programs, and continue to develop new areas of discovery. This includes the capacity to biobank patient samples, collect patient-reported metrics that are more holistic measures of their wellness, and test innovative approaches to care directly in the clinic. These would all be impossible without the enthusiastic support of our patients and their families, who regularly tell us about the value they place in research.
What are some of your best transplant related memories?
I remember all of my patients and their families. All of them eventually leave our program, usually because they become adults. We have a small ceremony that we do with each family on the last day, which includes giving them a signed copy of the Dr. Seuss “Oh the places you will go” book. It is always bittersweet.
I am always struck by the testimonials of our patients. They all remember, with great impact, the days around when they received the diagnosis and important discussions that are held afterwards, leading to the transplant. Their stories are all unique, but each has impact and ultimately it is what drives all transplant professionals to continue to persevere.
The Transplant Research Foundation of BC (TRFBC) is dedicated to funding peer-reviewed organ donation and transplantation research. Since 2009, TRF has given out over $665,000 in research funding to BC-based scientists, which has been leveraged into more than $10 million in external funding from agencies such as Canadian Institutes of Health Research, Genome Canada and Canadian Donation and Transplantation Research Program. TRFBC is proud to have funded Dr. Tom Blydt-Hansen’s projects
Quality of life and mental health needs of children after solid organ transplantation in BC and Enhanced immune monitoring in pediatric kidney transplant recipients.