Transplant Confessions: "I Wish I had known..."

HeartBrothers Co-Founder Shared His Transplant Journey at Webinar with CareDx

The HeartBrothers Foundation recently co-hosted a webinar with CareDx, titled, Transplant Confessions: I Wish I Had Known…. HeartBrothers Co-Founder and heart transplant recipient Pat Sullivan was a featured speaker along with fellow transplant survivors who shared their stories. HBF serves thousands of heart failure patients and families with financial and emotional support, as well as housing near Boston’s top medical centers. CareDx supports transplant patients with cutting-edge diagnostic testing and a new health tracker app, AlloCare. Along with Sullivan, key webinar speakers included Jesse Arnold, who has cystic fibrosis and received two double-lung transplants; Ebert Mahon, who received a kidney transplant; and Lillian Beretta, whose husband passed away while waiting for a new heart. The panelists each shared what they wish they had known pre-transplant to have made the journey a little easier...

What was the biggest surprise during the transplant process? Sullivan said he wished he had known how complicated the whole journey would be, even post-transplant. “You need to learn about interactions between medications, diet, exercise, and how the organs all rely on each other," he said. "Heart failure can cause all the other organs to fail because of the lack of oxygenated blood.” Sullivan shared he wished someone had told him about “the crash,” or sudden drop in heart function. “I was a heart failure patient for 18 years before my crash… which was due to a botched procedure that caused a bleed. No one told me that as you’re declining in heart failure, all of a sudden you can go off a cliff. Now I’m talking to hundreds of patients, and I know I’m not alone in that.” As a caregiver, Beretta said she wished she had anticipated communication challenges. “What I wasn’t prepared for was when he was intubated…how difficult it was to navigate what he wanted. That was something that I really wish I had thought through beforehand,” she said. Arnold wished someone had warned him about possible episodes of psychosis in the hospital. “With the combination of morphine and lack of sleep, I started to hallucinate, seeing bugs crawling all over the walls. I guess it is common, but nobody ever told me that.”

Do you have any advice on how to manage your mental health on the transplant journey? A while after his transplant, Sullivan visited a psychiatrist who told him that he likely had PTSD from his ordeal. “Seek professional help when you can,” he advised. “You definitely have your good days and bad days,” said Arnold. “After 13 years of being on heavy anti-rejection meds, I am in the process of speaking with the psychiatrist on my transplant team. I needed to listen to my loved ones around me and not be offended or push back.” What are some tips & tools to stay on top of things? Using AlloCare helps Mahon keep track of appointments, medications, and more. “It’s easy for me to plug in my daily medications and it connects with my watch and sends me prompts, like take my meds, and drink water,” he said.

“Definitely utilize all the technology we have access to today with all the different apps,” Arnold added. “Set up reminders to keep yourself organized.” “AlloCare is a tremendous tool,” Sullivan said. “My wife also keeps me on track.” Having a support system and sharing with loved ones is key. How have you built that community around you? “My wife just joined the board of a cystic fibrosis charity in our area and I started participating,” Arnold said. “I did some speaking and it really makes me feel like I am hopefully inspiring someone with my story and giving them hope and easing some fear that they might have. Gratitude is huge.” Beretta agreed. “Giving back fills you.” “I keep positive by helping others,” Sullivan said. “Because we’re in constant contact with people in our same boat, it keeps us positive.”