Double Lung Transplant. Most of us couldn’t possibly imagine what that entails – to have one or to care for someone who just did. Beth and Tony Duke, a.k.a. the Transplant Rogues, could write a book about it. After years of trying to get a diagnosis and a referral to the Transplant Program, Tony successfully underwent his surgery in the Spring of 2016.
He almost didn’t make it to the operating table.
It’s probably the only place where his wife, Beth, wasn’t physically by his side. Beth is Tony’s lifeline except they aren’t playing for a million dollars. They are playing for a much larger prize: Tony’s life.
By current standards, it is a pretty extreme case of caregiving. Although it doesn’t define Beth’s life, it is the equivalent to a part-time job. That’s in addition to being the sole financial provider in their home. With his progression and recovery, Beth’s caregiving activities continue to ebb and flow. What they’ve learned: our health care system is siloed and all transplants have complications resulting in setbacks. For Beth, this means spending countless hours figuring out how to bridge those siloes to get the right services and supports for her and Tony. And when there is a setback in Tony’s recovery, it can also mean trips to Vancouver on a moment’s notice, which from Union Bay on Vancouver Island, means 6 hours of travel one-way.
She certainly doesn’t mind and she doesn’t see her role as one-sided in Tony’s recovery. “We’re a team and I accompany Tony to all appointments, partly because I am now the sole driver. My background is in science and education, so I find myself being the ‘Geek Speak’ translator. We’ve always held each other’s powers of attorney and had health care directives, so we both enter appointments and ultimately, Tony’s recovery as a team.”
It’s hard to set a criterion for a “kick-ass” caregiver. In fact, we think all family caregivers are pretty amazing. And that’s an important message for all of us to take away. Caregiving is hard. Every day caregivers are faced with circumstances, some extreme and others more routine. But, they put their capes on every day.
When Beth puts on her cape, it’s not just with Tony in mind but all of those waiting and recovering from transplants: to promote organ donation, support transplant candidates and recipients and, most importantly, live life like their donors are watching.
Beth and Tony are helping others by creating a “Transplant Rogues” workbook that’s full of information and all of the medical tracking sheets and contacts they wished they had at the beginning – to help during every phase of the journey from getting a referral through to living a healthy life after transplant. For more information, head to their site http://transplantrogues.com/rogues-blog/
Beth is one of our featured presenters in our upcoming webinar “Coach Caregiver” on Thurs., Oct. 27th at 6:30 pm PST. Register now to hear more about her and Tony’s story and tips on navigating the health care system.