Questions for the Valve Clinic Coordinator at UHS

Can you tell us about your background? 

Prior to taking the Valve Clinic Coordinator (VCC) position, I worked in the catheterization lab as a staff RN. I have roughly 5 years of experience working in the cath lab, in addition to experience in pediatrics, medical surgical nursing, home care, and critical care nursing. I have been an RN for 10 years, and graduated with my associates from Broome Community College and then from SUNY Delhi with my BSN.  

What qualities do you feel are important in a TAVR coordinator?

Important qualities in a VCC include organization, patience, a good understanding of the structures of the heart and its functioning, a good understanding of cardiology (such as medications, disease processes, and symptomatology), and being a patient advocate and good educator. Being a VCC, you wear a multitude of hats; it is important that you are confident and comfortable in the realm of cardiology, and display a vast knowledge in the field. Patients ask a lot of questions and you are their gateway to understanding the processes. With that said, organization is one of the key components in being a successful VCC. Because there are so many things to keep track of, using a spreadsheet to organize your patients is imperative to your success.

How are you scheduling tests and organizing the resulting data? Do you have any suggestions for potential TAVR coordinators out there who are just getting started?

We at UHS use a spreadsheet worklist to organize all our patient data. This gives us a way to organize all our patients and how far along they are in their TAVR workup process. For example, we place patients in 6 different categories: patients under TAVR evaluation, patients under TAVR evaluation that are approaching readiness, TAVR procedure scheduled, TAVR procedure completed, under observation, not ready to proceed, and not a TAVR candidate. We track testing that has been completed or is scheduled, such as heart catheterization date, computed tomographic angiography (CTA) date, and cardiothoracic surgeon consultations. I think one of the hardest aspects of my job is scheduling the workup testing for this population of patients. A lot of times we schedule and reschedule tests as things start to change within the structural heart program. For example, a sicker patient may have to be prioritized in the workflow. This can be very difficult to explain to patients. My advice to VCCs out there is to explain the process well ahead of time to give patients a realistic idea of how the program works. Let them know the amount of appointments and diagnostic testing that are involved during the workup phase and that things may change along the way. There is a lot of time spent by patients traveling back and forth to appointments, and this is difficult due to the population we serve — patients are generally over the age of 80 years old.

At what points do you find patients to be most anxious, and how do you work to address that?

I find patients are the most anxious in the beginning of our process. I think the unknown is the scariest for the patients. A lot of our patients do not understand aortic stenosis, the symptoms it causes, and their treatment options. To be told that you need a valve replacement can be quite frightening for elderly patients. Especially if they have been told they could die without receiving a new valve. This is all true; however, it is the way this message has been conveyed to these patients. The prospect of undertaking a major heart valve procedure can be quite daunting for patients and their families. It is our role as providers and patient educators to guide them through the process. In order to help ease some of the patient fears, we like to give them a lot of education at their initial consultation visit. I also do a lot of education over the phone and in my office prior to their valve clinic consultation. Most of our patients feel a lot better after leaving our office. 

How are patients prepared for discharge?

We initiate the discharge planning process upon admission. Aortic stenosis patients often have co-morbid conditions and debility that require at-home care, short term rehabilitation, or skilled nursing home placement upon discharge. Our femoral access patients are all done percutaneously, so we like to get them out of bed within 4-6 hours post operatively. Since our rapid triage protocol with conscious sedation, our typical length of stay is 1-3 days, but can be longer for alternative access patients. A dedicated physical therapy and cardiac rehab team performs a thorough bedside evaluation on post-op day 1 or as soon as the patient is ambulatory. Our cardiac case management team is alerted to the anticipated discharge care needs of the patient so the discharge planning and placement process does not impede length of stay. After hospital discharge, I place a follow-up phone call and arrange an office visit within one week. This allows us to address issues early before they impact recovery or cause readmission.   

How do you organize data upload for registry participation?

Participation in the STS Valve Registry is a requirement for all TAVR programs. Currently the role of STS data entry is a shared by the cardiac nurse data coordinator and our structural heart nurse practitioner, Michele Thomson, NP. I don’t want to speak for her, but I do know she keeps a spreadsheet with the names of patients that need to be added into the registry. We perform a thorough initial data entry that includes the patient background, demographic data, and procedural outcomes. This is followed by a 30-dayand 1-year data entry to include any significant clinical events that occur post TAVR. As our valve program continues to grow, so does the time commitment for the TVT registry. We make every effort to enter data immediately post hospital discharge and in real time as clinical events occur. We monitor our progress with the use of a detailed spreadsheet and update it regularly.

What do you like most about your work?

I truly love taking care of patients and that is why I became a nurse. I think working as a nurse in the valve clinic offers you a unique opportunity to change the lives of your patients. In many nursing jobs, once your shift is over, it is rare you ever see the same patient twice. Working in this type of environment (a valve clinic), you are given the opportunity to work intimately with each patient and their family. There are many times I have felt like a family member to these patients. I talk with patients numerous times on the phone, I see them in the office on several occasions, I take care of them during their procedure as a circulating cath lab nurse, and then I see them after their valve replacement. It is truly a rewarding job to take care of such a delicate population of patients. I have the ability to see patients through their entire journey from start to finish, and that is a rare opportunity in most nursing jobs.

Kara Mucilli can be contacted at kara_mucilli@uhs.org.