Transplant caregivers often face an array of struggles that are commonly overlooked, especially when it comes to communicating the realities of the transplant journey. From caring for the patient, managing daily tasks, and dealing with the emotional and financial hardships that can come from transplant, it is a role that requires a lot of strength.
Michele Keefe, a Binghampton, NY area native and past Howie’s House guest, recounts her journey as the primary caregiver to her husband, Tom, who received a double lung transplant in August of 2021.
Tom had been suffering from COPD for several years before finally getting listed for a transplant. During this time, Michele did significant research into Tom’s disease and possible outcomes. She says that she always knew that a transplant was going to be what Tom needed. “I started advocating with his pulmonary physician at home, and saying that the only way we were going to fix this was with a transplant,” explains Michele.
Once Tom was listed, their journey to transplant was a short one. Just 2 days after getting listed Tom received his life-saving transplant. The couple were able stayed at the Howie’s House during Tom’s recovery. Michele says that as a caregiver, staying at the Howie’s House made all the difference.
“There’s a hundred million things that you are worried about as a caregiver. It was comforting to know that I didn’t have to worry about where I was going to sleep or what I was going to eat,” says Michele. “It probably seems mundane… but the meal at night was huge. You get to the hospital early, and you’re there all day, and then by the time you get him settled for bed and you leave, you don’t want to have to worry about what you were going to eat, it was just here.”
She explains how hard the transplant journey can be to prepare for, and how feeling like she had a safe place during that time of uncertainty helped ease some of her stress.
“Everything while on the transplant journey is new. They give you all the education and they tell you everything beforehand, but it’s not the same as going through it,” Michele recalls. “It just is comforting to know that if you had a need, that this was the place that could take care of that.”
Michele says that she managed the many stressors of being a caregiver by learning to “roll with the punches” and by practicing patience.
“You learn to be patient, and to roll with it. Some days it didn’t matter if I had 14 things on the to-do list, we would have to just sit and breathe together,” she explains. “Someone said to me early on in this process, ‘Life is a juggling act, and you can’t let glass balls fall, which are your health, and your family. Rubber balls you can let go as your juggling, because you can always find another job or another car, but you have to prioritize what’s important.”
When asked if she had any advice for caregivers, she says that “it’s important to be as knowledgeable as you possibly can and to trust your gut, because if there is something in you that’s saying ‘this isn’t right’, you have to be the advocate for the person that you care about.”