An artist in Santa Barbara, Monica enjoys painting, sewing, yoga and walking her dog, Penny, at the park and by the ocean. She says the individualized care she receives from Dr. Richard Belkin and the Cottage Cystic Fibrosis Clinic helps make it all possible.
Now in her 30’s, Monica was diagnosed with cystic fibrosis at 9 months old and has been a patient of Dr. Belkin’s for about half her life. “Dr. Belkin and his whole team have been supportive, available and very involved,” she says. “I enjoy and benefit from the clinic’s multidisciplinary approach.”
Currently she manages her condition with oral and nebulized medications and respiratory vest therapy, which can help reduce infections and promote better quality of life. While Dr. Belkin referred her to specialists at Stanford University to talk about the possibility of a lung transplant in the future, she has not been added to the list yet because her respiratory health is currently stable.
Unless an acute issue crops up requiring immediate attention, she visits Cottage Cystic Fibrosis Clinic every three months for checkups, and in between communicates with the team there as issues come up, for example, a bad cough. “We’re very connected."
Maddie (Left) and Savanah (Right)
Maddie transitioned from a large hospital in southern California to the Cottage Cystic Fibrosis Clinic at a critical point in her life. Her older sister, Savannah, remembers Maddie saying she was floored at how well everything went with that first appointment. She felt trusted and engaged in her own care, which was especially important because Maddie was a new mom balancing the daily demands of her illness with the care of her newborn daughter.
Over the next two years, Maddie's health actually declined. But with a change in her daily routine, new medications, and "the everlasting support from the team at the clinic" they found a treatment regime that brought her lung function back up to 47 percent. Now, she goes to the beach with her daughter, visits with family and helps promote the Cystic Fibrosis Foundation’s Great Strides fundraising walk in southern California as an ambassador for the organization.
Her sister got caught up in the enthusiasm herself. Savannah had seen Maddie struggle with colds, sinus infections and worse as they grew up together. Maddie was misdiagnosed for the first eight years of her life, and has also dealt with cystic fibrosis-related diabetes and liver disease. Savannah wound up going with their team of Cottage caregivers to a CF conference in Milwaukee to represent the perspective of a family member. While there, she learned an incredible amount herself.
"Watching my sister have to jump through the hoops she has to, all the medicine she has to take, and all she has had to given up just to survive has been the hardest thing I have had to learn how to live with. And to see all these people working to improve hers and everyone else’s life with CF, makes my heart feel so full."