Bailey McMonagle’s life is a health journey, impacted by an incurable disease and no control of her 32-year life—or her future—when her body takes unexpected turns. Yet, despite a range of medical challenges that far exceed what many people experience during their lifetimes, she chooses gratitude and focuses on the good things in her life. Bailey is a positive force, who describes herself as “lucky.”
Diagnostic odyssey
In 2008, Bailey collapsed when she was walking to high-school math class. She previously had bouts of chest pain and could not physically keep up with her peers—symptoms that were misdiagnosed as asthma and panic attacks. She always felt there was something more serious but never found a doctor who believed her. This time, experts at the local hospital determined it was a cardiac issue, but they did not know exactly what was wrong.
Bailey received a doctor’s referral and departed her supportive hometown of Waterville, Washington, for Seattle Children’s Hospital. “Waterville is a town of about 1,000 people. They held fundraisers, helped walk my dog, fed me and drove me to Seattle—four hours away—for appointments. Still to this day, they send me love and encouragement.”
In Seattle, Bailey received a diagnosis of hypertrophic cardiomyopathy (HCM), an incurable disease that makes it hard for the heart to pump blood. It turns out she’d had this heart condition her whole life but didn’t know it. Despite the alarming diagnosis and limited treatment options, there was hope. Doctors told her there would be great advances in medication, surgery and even stem cell research in the future. Along with prescribing medication to manage her symptoms of heart failure, they encouraged Bailey to “hang on.”
“I was lucky to get diagnosed with HCM because it kills a lot of young people,” she says.
Keeping hope alive
When Bailey’s symptoms worsened, her mother contacted the Hypertrophic Cardiomyopathy Association, which told her to call Mayo Clinic immediately. In January 2009, Bailey experienced a new and welcoming model of care.
“I was immediately impressed at Mayo Clinic,” she shares. “I never had my entire day planned out like that with all the tests scheduled and completed beforehand, so the doctor had all the results when he met with me. It was eye-opening, and my family and I just kept saying, ‘Why doesn’t every health system run like this?’ We knew we were in a very special place.”
Dr. Steve Ommen shared treatment options, including an apical myectomy, which he said was a very serious surgery and advised waiting before undergoing the extreme heart procedure. They would see how Bailey did with a new medication, and monitoring and evaluation would continue in Seattle.
In 2012, Bailey returned to Mayo Clinic with her fiance, Nolan. It was two weeks before their wedding day. Five minutes into her appointment, Dr. Steve Ommen said the time was right for an apical myectomy, which would be performed by Dr. Hartzell Schaff. “Dr. Ommen and Dr. Schaff were both so kind and caring when I began my journey at Mayo Clinic,” says Bailey.
The couple spent their “honeymoon” at Mayo Clinic, and the surgery went well. Unfortunately, Bailey’s heart was so sick that she was placed on the heart transplant waiting list in the months to follow.
“Cry it out, then get yourself up and take care of business,” Bailey says.
Mentally, physically and financially, it was challenging. However, six months later she received great news: a donor heart was available. In 2013, Bailey had a heart transplant and received the gift of life. “Without support and friendship, there is no way I would have been able to get my transplant. I am really lucky,” she shares. “I am so grateful for all the love and support of the transplant team.”
Two+ hearts beat as one
Bailey’s heart transplant required her to be in Rochester, and follow-up appointments continued with the transplant team. Near and far, a dedicated support system of caring, compassionate family members and friends was ready to help.
“My husband, Nolan, and I have been inseparable since middle school. He has been by my side through everything,” Bailey says. “He quit his job and became my full-time caregiver and didn’t leave my side for over a year. He provides peace, love and safety. He’s always beside me, willing to hold on to me and pick up my pieces.”
Bailey continues, “My mom, sister and best friend back home in Washington call me every day. They prove to me time and time again that they will jump on a plane and be here if I need them to. I am also very lucky that my husband has many aunts, uncles and cousins in Minnesota and Wisconsin who have really helped us out.”
Building a community of care
Bailey and Nolan planned to stay in Rochester for approximately a year, but they developed a love for the city, the medical care and the people—and decided to stay.
“One thing that has been really unique and special was forming a little transplant community to lean on for support,” Bailey says. “When I received my heart, I met the family in the room next to me, and they are now my family. Having people who can relate to your lows and celebrate your highs made it all much easier to face each day.”
She says, “We are always thankful for ‘Minnesota-nice’ neighbors. We have friends who drop everything and come help me when I need it and have us over for Sunday family dinners. It means so much to love and be loved here.”
Coping with bumps in the road
Today, Bailey’s heart functions well, and her support system’s ongoing help is critical to maintain her health. She has experienced chronic rejection since her transplant and has a weakened immune system. A few years ago, her lung function became compromised by a pulmonary embolism.
She also had a miscarriage and total hysterectomy followed by a heart attack during the pandemic. In addition, she lost both of her close friends, who also had transplants, within a two-year period.
Weekly therapy helps Bailey cope and process it all—and she remains grateful and positive. She spends most days at home with the couple’s two dogs and enjoys reading, cooking and swimming as well as volunteering at the Ronald McDonald House, being on the theater stage and FaceTiming with her nieces. She realizes that if making it through the day is all she can accomplish, that’s OK too.
Nolan balances being a caregiver and spouse. He works full time and has gone back to school to become a cardiovascular invasive specialist.
Bailey shares wisdom to live by: “Have something that you love and that grounds you each day to calm the chaos and keep you in the present. That may be a person, hobby, family member or even a pet, but I encourage you to prioritize and nourish it.”
Lucky in life, lucky in love
Bailey’s focus is to do the best she can. She seeks happiness and peace in her life and wants to travel and have new experiences. It’s important for her to take care of herself. Equally important is the continued support of her husband, family, friends and community. You could say Nolan—along with many others—is lucky to love and live life with Bailey.
“He has the biggest heart,” Bailey says. “Having such a loving husband keeps me smiling. I know I am so lucky to be here and live this life.” ::
