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NHF 70th: Saluting HTC Nurses

May 7, 2018
Mary Lesh, RN, MS, CPNP

American author and poet Maya Angelou once wrote that nurses “have the opportunity to heal the heart, mind, soul and body of (their) patients, their families and (themselves).”

Angelou’s words have special meaning for anyone with a bleeding disorder who has sought care at one of the 156 hemophilia treatment centers (HTCs) across the country. HTC nurses play a vital role in ensuring their patients live happy, healthy and productive lives and in many instances, the care they provide individuals spans birth to adulthood.

So to mark National Nurses Week (May 6-12), NHF recognizes all nurses but especially those who provide expert care at HTCs. And for her perspective on HTC nursing, we spoke with Mary B. Lesh, RN, MS, CPNP, a pediatric nurse practitioner at the UCSF Hemophilia Treatment Center. Ms. Lesh also is an assistant clinical professor at the UCSF School of Nursing and chairs NHF’s Nursing Working Group.

You’ve been a nurse for more than 20 years. Why did you choose this career path?

I chose to pursue a career in nursing because it seemed like a practical way to work with people. I like science and love humanities, so I found myself naturally looking at nursing when I went to college. There are a number of nurses in my family, so I have had plenty of strong role models who encouraged me along the way. Nursing also appeared to be something that would challenge me to be a better person and 20 years later it continues to do so. 

Twelve years ago, you began working at an HTC. What led you to specialize in bleeding disorders?

As a bedside nurse, I had worked in the pediatric intensive care unit, so I was exposed to patients suffering from various hematologic problems. I vividly recall helping one patient who had significant complications following a tonsillectomy resulting from her undiagnosed von Willebrand disease. That experience had a lasting impact on me as it made me realize how important proper diagnosis and treatment is in the management of bleeding disorders.

I later pursed an advanced practice degree as a nurse practitioner in order to enhance my physical assessment skills and my ability to directly implement care for patients.

Why are HTCs so integral to the care of people with bleeding disorders?

HTCs’ comprehensive care model enables people with bleeding disorders to have access, typically in one location, to a range of healthcare professionals specializing in their condition—from hematologists, orthopedists, nurses and nurse practitioners, to physical therapists, social workers, psychologists and beyond. The mission of the HTC—the unity of purpose professionals share really contributes to patients’ well-being. And the close partnership between healthcare professionals in the HTC model doesn’t always exist in other areas of medicine.

How important is the role played by nurses at HTCs?

Vital. At HTCs, nurses not only focus on the disease, but promote the well-being of the whole patient. Nurses and nurse practitioners partner not only with the individual with the bleeding disorder, but their family members. These partnerships ensure families find optimal ways to manage bleeding risks and meet their goals throughout many stages of life.  

Florence Nightingale, the founder of modern nursing, said the qualities of a successful nurse range from intelligence, commitment and discipline, to courage, empathy and, of course, keen observational skills. HTC nurses exhibit these attributes as they work together with their teams and partner with families. And their resiliency enables them to face challenges and persevere.

If you had a chance to speak to nurses considering the next step in their careers, would you advise them to considering working in an HTC?

HTCs provide nurses with opportunities to do what they do best, which is to foster the courage in others to be knowledgeable, informed and able to treat their condition. And as I work with students, I often encourage them to consider working in an HTC because the experience continues to inspire me on a daily basis.