Nurse Practitioner Champions Sickle Cell Patients

Lynette Fenchel, MSN, APRN, FNP, is both a whirlwind of energy and a source of calm for patients, families and staff in Hematology and the Sickle Cell Team. When a project needs doing, she steps up; when a family gets a new diagnosis, she reassures them. For her efforts, she recently received the Carol McKenzie Award for Advanced Practice Nursing. But awards, though greatly appreciated, are not what motivate her.

Nurse Practitioner Champions Sickle Cell Patients

Lynette Fenchel, MSN, APRN, FNP, is both a whirlwind of energy and a source of calm for patients, families and staff in Hematology and the Sickle Cell Team. When a project needs doing, she steps up; when a family gets a new diagnosis, she reassures them. For her efforts, she recently received the Carol McKenzie Award for Advanced Practice Nursing. But awards, though greatly appreciated, are not what motivate her.

Fenchel’s first prolonged exposure to the healthcare profession occurred when she was growing up. Her mother was treated for Stage 4 non-Hodgkins lymphoma, which she ultimately survived. Her grandmother developed cancer, as well a few years after her mother’s recovery.

“I was a little traumatized by these experiences, but watching the doctors and nurses care for both of them made an impression on me,” she recalled.

In high school, she started volunteering at a local hospital and enjoyed it. After graduation, she decided to enter the nursing program at the University of Cincinnati, where she earned her undergraduate and master’s degrees.

“At first, I didn’t want to work in Hematology/Oncology because I thought it would be too sad or too hard with my family history,” she said. “But I completed my nursing co-op on A5, and even though it was difficult, it was very meaningful work. The patients and families taught me so much. So when I graduated, I applied for a job there.”

Fenchel primarily sees patients with sickle cell disease, an inherited condition where the body makes red blood cells that become “sickle” or crescent-shaped, rather than round, causing them to clump together and get stuck in the blood vessels, leading to decreased oxygen delivery to parts of the body. This process contributes to anemia, organ damage and painful episodes, known as “crisis.” While this disease is especially common in those who are of sub-Saharan African descent, people from other parts of the world, such as South/Central America, Middle East and the Mediterranean, are also impacted.

“It’s a chronic and medically complex disease, which keeps me on my toes making sure we’re doing everything we need to serve our patients well,” said Fenchel. “I have the opportunity to get to know these kids and their families, to watch them grow up and learn to manage their care.”

Getting Acclimated

When Fenchel first started working with the Sickle Cell Team 4 years ago, she stepped into a role that had been occupied by two seasoned nurse practitioners who had been there for about 15 years.

“I was a brand new nurse practitioner, 25 years old, and patients and families just looked at me like, ‘How old are you and what are you doing in my room?’” she said. “It took a while to build up trust and rapport, but my colleagues were amazing and supportive from the beginning.”

Fenchel was soon immersed in learning about her patients, their needs and the challenges they face. For young parents with a new baby, receiving the initial diagnosis of sickle cell disease is devastating.

“If you go online and look up sickle cell disease, it sounds like your child is going to have this horrible life,” said Fenchel. “But we try to reassure them and teach them about it in small bits, so they aren’t overwhelmed.”

The bright side is that patients have better treatment options available to them than before, and research points to promising therapies that could lead to a cure.

Why She's a Winner

Lynette Fenchel recently received the Carol McKenzie Award for Advanced Practice Nursing. Here’s what her colleagues had to say about her:

“Lynette’s energy and enthusiasm make her a true leader, propelling her to champion innovation within our group. She is consistently the first person to offer her time when our team is making efforts to improve our approaches to care.” --Naomi Joffe, PhD; Emily McTate, PhD, Behavioral Medicine and Clinical Psychology

“Lynette is highly intelligent, motivated and thorough…a caring and thoughtful clinician and advocate for her patients. She has become a respected and indispensable pillar of our program.” --Charles Quinn, MD, MS, Pediatric Sickle Cell Program

“Sickle cell disease is a complex condition that requires many layers of medical knowledge. In addition, the management of sickle cell patients is ever-changing. Lynette has gone out of her way to enhance her skillset and understanding of our patients’ needs in order to deliver the most effective care.” -- Patrick McGann, MD, MS, Hematology

“Lynette’s goal is to optimize the health and quality of life for all our patients and their families. They are not simply a diagnosis to her; they are individual patients with unique needs that she always strives to meet and exceed.” -- Teri Fetters, MSN, RN, CPN; Jennifer Rollins, BSN, RN, SPHON; Shannon Boykin, MSN, RN, CPN, Sickle Cell RN Care Managers

“Lynette started this job as a fresh NP with enthusiasm and a thirst for knowledge—traits that have not faded for one minute in the time we have worked together. I have always been impressed with her unbelievable professionalism, intelligence and genuine care for our patients, but this past year has shown me that she is truly a gift to this institution and to me as my coworker.” -- Kelly Clapp, CNP, Pediatric Sickle Cell Program

“We start all of our babies on hydroxyurea, which helps the body make more fetal hemoglobin. Fetal hemoglobin gets into the red blood cells and prevents them from sickling,” she explained. “We have patients now who are 5 or 6 years old who have had minimal to no complications from sickle cell—very little problems with pain and very few hospitalizations. A couple of them have almost completely normal lab work. It’s astounding and very exciting.”

At this point, the only curative treatment for sickle cell disease is a bone marrow transplant, but a new gene therapy program is being trialed where the patient’s genes are edited to make more fetal hemoglobin.

“They still get a dose of chemotherapy, but it’s less than what is given with a bone marrow transplant,” said Fenchel. “The advantage is that you don’t have to have a matched sibling donor. You’re donating to yourself, and the edited genes are reinfused.”

Meeting the Challenges

Adolescent patients did not have the benefits of the newer therapies when they were small, so they have a different frame of reference.

Said Fenchel. “The 15-year-olds I see have had more episodes of pain or long hospitalizations or negative experiences at other hospitals. One of my patients was taken to the ER at another institution by her mother. Her mother worked at a detention facility and was wearing a uniform. The staff assumed the patient was incarcerated and took her to a separate room, where she was treated very differently. Our challenge is to teach kids to trust the medical system but still advocate for themselves because, unfortunately, they encounter racism in the community, as well as a lack of knowledge about sickle cell disease.”

Education is an important component of Fenchel’s job. Patients and families need to know as much as they can about their medications, how to take them and what pain meds work best for them. To assist in this effort, Fenchel applied for and received a Live Well Collaborative grant from the University of Cincinnati last year. She worked with the Live Well team to design educational materials for patients to help

them visualize what sickle cell disease does to their blood. One tool they came up with is a tube-shaped device that works like a rain stick.

“It is filled with 3-D printed red blood cells—some shaped normally and others that are sickle-shaped,” she explained. “When you flip it, you can see how the normal blood cells flow freely through the tube, but the sickle-shaped cells get stuck.”

The team also developed a book that can be given to newly diagnosed patients that contains information about how to manage sickle cell disease, what to do in an emergency, medications, and complications.

“It fits in a backpack and is interactive, with pages the kids can fill in,” said Fenchel. “It’s designed to be shared with grandparents and other caregivers. We also created a new website with information for patients, families and providers to use in and outside of clinic.”

Helping patients transition to adult care at age 21 is another project Fenchel is involved in. It’s a critical time when many are lost to follow-up.

“They meet with our psychologists, attending physicians, social workers and nurse practitioners to prepare them for being their own best advocate,” she said.

Loving Her Work

Fenchel takes her greatest joy in seeing patients who’ve struggled make progress in managing their disease and in helping parents grow confident in their ability to care for their child.

She also is grateful to work with an amazing team.

“From the moment I arrived, my coworkers have been respectful in listening to my ideas and answering my questions,” she said. “They share insights and are always approachable. Even when I was brand new and had no experience in the field, they made me feel at ease. It means so much to me that I have always had a seat at the table. “

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