A Message to My CF Patients

Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being. 

| 4 min read
A professional headshot of Mary Katherine
Mary-Katherine Wainwright, MSN, CRNP
Mary Katherin smiling with a coworker in the CF care center where she works

Caring for someone can take many different forms. Early in my nursing career, I knew I desired something more than what I believed to be the standard medical care for patients. As I stood in the ER for nursing school clinical rotations, I felt lost in the fast-paced operations. Of course, I still had a lot to learn. But what brewed in me the most was the lack of time to connect. The job was to get the patient moved on to the next step. All the while I was curious, wondering, “What happened next? Did they get better? Worse?” Although the ER is an important part of the medical world, I knew it was not for me. I felt much the same about my ICU experiences. I found connection in patients’ families, and I had the ability to offer comfort at times. But I yearned for more of a continuum. I learned early on that a chronic care model was right for me. 

Over the last eight years, I have noticed that being part of a specialized, chronic care center is not a role taken lightly by those who choose it. Not only do we “care for people” in a medical sense, but we also genuinely get to care for individuals. 

As a member of a cystic fibrosis care team, this is what I wish my patients knew:

We value our relationship with you, and we want to know you as a whole person. We are with you on this journey — and we all learn a lot along the way. 

I recently heard it described that people have many colors to their lives and perspectives. When I think of my patients, I know that having CF is only one color of their life. There is so much more than just CF.

We recognize that you have school, work, families, friends, hobbies, and goals. When we are considering care plans with you, we hope and strive to help you in ways that support all those things. We imagine you at your highest potential. Your health is our utmost priority, and we also want to make sure that you feel listened to, trusted, and honored as a decision-maker.
 

We celebrate you with pride for all your achievements. 

We also know you have struggles and that you are continually finding ways to balance managing your CF and your life-happenings. We genuinely feel for you when you are sick or when you have to spend more time on your CF care than would be ideal. We admire your strength during hard times. We feel protective of you and carry empathy for you as we provide support in any way we can. 

You have a care team that is exceptional in collaborative expertise, a unique asset in my experience. We know that each role of this multidisciplinary team could be beneficial to you, and we make it a priority to provide you with holistic care. Sure, there may be times in your life where this seems excessive, but I like to think of the CF care team as a wonderful, full sideline of team members who are here for you if you need us. 

Each of you is one of the reasons why we do what we do. We are highly invested in your well-being. We hope to care for your medical needs for many years to come and are immensely grateful to do so. 

We care very deeply about you.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Mary-Katherine Wainwright is a nurse practitioner at the UAB Adult Cystic Fibrosis Center. She completed her nursing studies at Samford University in Birmingham, Ala. and started working as a registered nurse in the Heart and Lung Transplant ICU. She later obtained her graduate degree from the University of Alabama at Birmingham, which sparked her role at the UAB Adult Cystic Fibrosis Center starting in 2016. She is involved in advanced quality improvement initiatives including the Cystic Fibrosis Learning Network as well as collaborative operations with The UAB Gregory Fleming James Cystic Fibrosis Research Center. She enjoys spending time at several beaches and lakes in Alabama with her husband and two sons.

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