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Question: As a CTEPH patient, what can I expect from my medical team as I prepare for the PTE surgery?
Imagine for a moment that you’ve just been told you have pulmonary hypertension and that this is due to chronic blood clots, a condition known as chronic thromboembolic pulmonary hypertension, or CTEPH. And while you’re stunned by what it means to have pulmonary hypertension, not to mention trying to figure out what is a “chronic blood clot,” you’ve also been given some good news: this is potentially curable!
The cure, however, requires surgery and not just any surgery, but a complex operation called a pulmonary thromboendarterectomy (quite a mouthful, which is why we call it a PTE). The catch is that this is only performed in a few places in the United States. So unless you are one of the few who lives near a medical center that specializes in the surgery for CTEPH patients, not only are you dealing with medical problems related to your new diagnosis, you also need to consider the difficult task of leaving your hometown to travel to one of these centers. This may entail traveling long distances to be seen by doctors, nurses and a team of care providers about whom you know very little.
This story repeats itself several times a week at the University of California, San Diego (UCSD) Health System, with patients and their families coming from all regions of the U.S. and the world. We have always remarked at the courage of those who travel here, away from their support systems, to undergo this major surgery, even though we also know this surgery is what is necessary to restore a better quality of life.
Realizing how difficult this might be, we approach patients and their families in a manner that goes beyond the diagnostic tests, the clinic visits, and the day-to-day hospital care. This starts with the first phone call to help arrange for a visit to UCSD. The intent is not only to provide information about the evaluation, the PTE surgery, and the important details about travel and insurance authorization, but to introduce ourselves as people who will be “your ambassadors” during every step of this journey.
Assistance with medical problems begins with a phone call from one of our nurse practitioners a week prior to coming to San Diego. Additionally, in an effort to allay initial anxieties, patients are met by a staff member on arrival at the hospital to review test and clinic schedules and to provide direction as to the location of departments within the facility. Because of the unique diagnosis of CTEPH and the complexities surrounding PTE surgery, emphasis is placed on carefully explaining the results of each test and addressing patient questions. For most, education can be an invaluable tool in coping with the apprehension that naturally occurs.
Perhaps the most significant psychosocial support provided to those undergoing surgery, however, comes from other patients. Often we connect our incoming patients with patients who have already undergone PTE surgery before they even arrive at UCSD for evaluation (sometimes before they even decide they want to be evaluated). Patients and their family members have told us that talking to other patients about their experience really helps to put them more at ease.
We have also noticed over the years that patients and family members seek each other out, visiting in their hospital rooms, sharing their stories, providing support and encouragement. We have “formalized” this interaction, which we refer to as the “Meet and Greet.” Time is set aside each week for our preoperative and postoperative patients, along with loved ones, to come together to share their concerns and to voice encouragement to one another. Although a member of the PTE team is present to answer any medical questions that may arise, this informal and voluntary gathering is completely run by patients. It is their time.
There is no one approach to patients with CTEPH who are about to undergo surgery. Our goal is to embrace the uniqueness of each individual, to spend the necessary time to educate, and to address each individual’s emotional needs in an effort to create an environment that promotes trust and reduces stress. After all, we consider each of our patients a member of this remarkable PTE family!
Answer provided by William R. Auger, MD, Professor of Clinical Medicine, Director of Academic Affairs, Pulmonary Thromboendarterectomy Program, UCSD, and Alicia Gormican, MPH, Pulmonary Thromboendarterectomy Program Manager, UCSD
This article was first published in Pathlight Summer 2014.
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