Pulmonary Hypertension Coordinator: Casey Wollenberg, RN, CCRN
Caring for patients with an orphan illness
Casey Wollenberg, RN, CCRN
Pulmonary Hypertension Coordinator
Los Angeles County + USC Medical Center
How did you come to nursing?
My bachelor’s degree was in political science and Spanish. I always knew I wanted to help people, so I began my career as a job developer and job coach. The population with which I worked was comprised of people with developmental delays, mental health issues and/or homelessness.
However, I soon discovered that I wanted to do something more hands-on. I went back to school for nursing and enrolled in the RN program at the Los Angeles County College of Nursing and Allied Health. My nursing education and clinical rotations were all at Los Angeles County facilities, which meant I was getting the most thorough real-world education available.
I was awarded a scholarship from the Los Angeles County Board of Supervisors and in exchange, I agreed to work at the County. I can’t imagine working anywhere else. I love the patient population at County. Many are undocumented, non-English-speaking, indigent, homeless, incarcerated or suffer from mental health issues. For these reasons, their care tends to be more complicated and they really need our help.
What is it about working with this population that you find rewarding?
What I enjoy about my patient population is that I have the opportunity to help those who would otherwise fall through the cracks.
One example was a 30-year-old female patient who presented in fulminate right heart failure. She was so swollen she couldn’t walk and so short of breath that she couldn’t speak. We were able to diurese her, start inotropes and get her a full work-up for pulmonary hypertension (PH).
We started treatment with a parenteral prostacyclin and got her onto a managed Medi-Cal plan so that she was able to follow up in clinic. The next time we saw her, she was less short of breath, was speaking in full sentences, had lost 25 lbs and reported being able to chase after her 4-year-old daughter.
Another example was a jail patient who had been incarcerated without his medications. I was able to coordinate with our jail clinic staff here and with the medical staff of the jail to ensure that the patient was treated. I feel very strongly that all individuals deserve care regardless of circumstance.
How did you come to this unique specialty?
At County, I enrolled in a rigorous critical care program and went to work in ICU/CCU. Eventually, I earned my CCRN certification. After several years, I decided it was time for a change — that’s when I became a clinical nurse coordinator for pulmonary hypertension.
At the time, there was no program at our hospital to follow patients with pulmonary hypertension. My attending physician and I built our program from the ground up.
Pulmonary arterial hypertension is an orphan illness characterized by elevated pressures in the pulmonary arteries. There may be multiple causative factors or the disease may be idiopathic. Short of lung transplant, there is no cure for the disease and its management is multilayered and complex. Patients must be followed very closely.
What is an orphan illness?
MedicineNet.com defines an orphan illness as a rare disease. It can also be a common one that has largely been ignored or that lacks research because of a lack of financial incentive for further study. With PH, it is a combination of these factors. David Montani, M.D., Ph.D., estimates the incidence of PH in the U.S. at about 2.4 cases per million.
What does your job entail?
In my position, I am responsible for coordinating the patient’s care by being present at all clinic appointments, teaching patients about their disease process, educating them on the highly potent medications involved, coordinating with specialty pharmacies and visiting nurses on the distribution and administration of these drugs and monitoring patients’ symptoms and lab results.
Should patients be admitted, I am also responsible for following them throughout the course of their admission, from the emergency department to the ICU to the medicine floor.
I provide support and teaching to the patient, nurses and providers as well as helping to coordinate discharge. I have also worked to add pulmonary hypertension drugs to the hospital formulary, develop formal protocols for care of these patients and coordinate in-services for nursing staff on the use of these drugs.
Beyond that, I also help to coordinate research studies for this disease process and associated medications. Additionally, I work with drug manufacturers to obtain patient assistance when necessary, provide advisory support for these companies and network with other PH centers and advocacy organizations such as the Pulmonary Hypertension Association (www.phassociation.org).
What resources are available to your patients after discharge? Do you use any telehealth or digital monitoring to follow up?
Patients discharged on medications for pulmonary hypertension receive them from specialty pharmacies due to heightened FDA regulations for those drugs. Specialty pharmacies are required to monitor patients’ lab results, particularly liver function and hCG (human chorionic gonadotropin), and check on patients’ compliance.
Depending upon the medications, some patients receive regular nursing visits from specialty pharmacy nurses for patient teaching. Patients are followed in clinic, usually once a month or more until they’re stable on their medications and then if possible at longer intervals.
I maintain close contact with my patients by telephone between clinic visits. Patients who are able are encouraged to attend pulmonary hypertension support groups, which are held at various centers throughout the month. These support groups generally have a guest speaker and allow time for open discussion. Patients are also encouraged to utilize the Pulmonary Hypertension Association, which offers educational resources, links to support groups, connection with other PH patients and much more.
How do patients with PH present?
Symptoms of PH present much like congestive heart failure: shortness of breath, chest pain, syncope and edema.
According to Montani, median survival time from diagnosis is only 2.8 years. This is in part because patients present with such generalized symptoms that they often go misdiagnosed. To correctly diagnose PH, practitioners need to do a thorough history and physical and maintain a low threshold of suspicion. RNs can often push for a transthoracic echocardiogram as a preliminary diagnostic to evaluate for PH.
Research into PH really began to flourish in the 1990s and we are learning more all the time. Each of the pulmonary hypertension centers in the greater L.A. area follows at least 100 patients and in some cases a lot more. All of these centers receive referrals from outside centers that lack the expertise to treat PH, but practitioners must first suspect PH in order to make a referral.
What is a typical day for you?
My job is very challenging, but I enjoy it because of all the different areas in which I work. I get a little bit of everything, from the emergency department to ICU and the medicine ward in the inpatient setting to the clinic and telephone support in the outpatient setting. I also get to work with the Pharmacy and Therapeutics Committee, the Protocols Committee and hospital administration. I enjoy networking with outside agencies as well.
I feel very well-rounded in my job functions. Most of all, it is very fulfilling to serve as nurse, educator and coach for patients who are very ill and very scared. To ensure their safety, empower them with knowledge and provide support and comfort is truly a privilege and the reason I do my job.
What’s your next career step?
I am currently enrolled in a family nurse practitioner program. I am interested in becoming an NP because in my work as a pulmonary hypertension nurse, I have learned to think like a provider while maintaining my focus on wellness as a nurse.
Ideally, I would like to remain in a setting where I can perform a combination of inpatient and outpatient duties. I look forward to having more autonomy and to learning and growing as a nurse. My greatest goal is to cultivate an even deeper connection to my patients and their care.
This article is from workingnurse.com.