Recently, we had the opportunity to interview kidney transplant recipient and patient advocate, Bet Tuason. Bet’s powerful voice brings awareness to the issues affecting individuals living with complex chronic health needs. Using his diverse experience as a transplant recipient and kidney patient, Bet works tirelessly to empower his community through advocacy, partnership, and volunteer activities.
What would you like people to know about you?
I am the grateful recipient of a gifted kidney that I received in 2018. Initially, my journey of end-stage renal disease began with feelings of denial, confusion, ignorance, fear, and hopelessness. In those early days, I was lost and defeated. Being introduced to the Kidney Care Centre Team changed all that. Shortly thereafter, I was placed on the waitlist for a kidney transplant and began dialysis.
Dialysis brought a new set of challenges. I clung to life for years on dialysis. Three times a week I would get up at 4:30 am to catch my HandyDART ride to the hospital, and was happy to be back home by 6:30pm. Exhausted, I would go straight to bed and rest for a day, just to regain enough energy to do it again. That was one of my hardest periods. Family, friends, faith, and the support of my dedicated health care team and professionals were my strength during those years and motivated me to persevere.
How has transplantation impacted your life?
Transplantation is a journey. It is a chance to continue the miracle that I call life. It has taught me to savour the moments, no matter how small. I now have a second chance to give back and volunteer for numerous organ donation and transplant related organizations.
What do you wish for the future of transplantation?
Without a doubt, transplantation offers hope, salvation, and an opportunity to live life to the fullest. I hope that support for transplant research remains strong for years to come, so that options and solutions are readily available. Everyone who needs a transplant should receive one. No one should die waiting.
Fundamental to your advocacy work is ensuring patients and families have a voice in decision making. Why do you believe it is so important to engage patients and families in research and in the development of health policies?
I believe in the advancement of humanity. Part of this is participating in work that will help to develop resources and tools that will improve the lives of transplant recipients and contribute to the overall survival of patients. Knowledge is a powerful tool and by sharing my experience as a transplant recipient, I hope to educate clinicians, administrators, and policy makers. It is so important to actively include the patient lens on transplant research and within the health care system so that patient care is truly responsive to patient and family needs. Afterall, how do we as a health system know how well we are doing if we do not ask patients directly and include them right from the early stages? What is important to clinicians/researchers, might not be important to patients. The more we can align clinicians/researchers and patients on approaches and goals, the better overall care systems and research will be.
At TRF, we believe the patient and family voice is instrumental to the research process. Research benefits from the experiential knowledge and insight offered by patients and families by ensuring the work is inclusive, meaningful, and accountable to all stakeholders.
If you are interested in learning more about how you can become engaged in research and use your voice to make a difference, email us at firstname.lastname@example.org