Easing the Stress of Clinic Days for Pulmonary Hypertension Testing
The alarm sounds at an absurd hour on those days of the year when I am always up earliest. No food or coffee. And only enough water to take my morning medications.
The commute is usually long and quiet. My mom drives while I rest, my headphones firmly in place as I mentally prepare.
The first stop is always bloodwork. The waiting room is filled with strangers, who will go from this place to countless other tests and appointments, just like I do.
Welcome to clinic day.
My first experience with clinic days was in the back corner of a bustling New York hospital. Living with a rare illness like pulmonary hypertension (PH) meant that I would have to travel across the country for most of my care. While the doctors and locations changed over the years, the routine of clinic days always looked mostly the same.
The testing for PH is fairly consistent across the patient population. It typically includes lab work, a chest X-ray, an electrocardiogram, an echocardiogram, a six-minute walk or exercise test, and pulmonary function tests. In addition, many patients undergo a routine right-heart catheterization every year or two.
These tests are all followed by a meeting with the primary care team to go over changes, medications, and future plans.
After 19 years of these clinic visits, my mom and I would joke that we had hacked the system — meaning that we worked hard to do everything we could to make these physically and emotionally draining days as easy on ourselves as possible.
From a logistical standpoint, knowing the location of each test and exploring options, such as valet parking, beforehand can help to ease the process. Things like making sure not to wear jewelry or a bra with metal can make changing for testing much easier. Similarly, wearing sneakers in anticipation of an exercise test can prevent the need to change footwear.
I also emphasize comfort during clinic days, from what I wear to the items I bring along. In my bag, I always make sure to pack water and easy snacks, in case there isn’t time to grab a real meal between appointments. I ensure that all electronics are fully charged for entertainment and distraction during waiting periods.
There is an aspect of advocacy that shouldn’t be ignored when it comes to clinic visits. Things can often slip from the patient’s control, especially from a scheduling perspective. Always double-check the timing of appointments to make sure the day can flow as smoothly as possible.
Additionally, don’t be afraid to ask questions regarding testing instructions or expectations for the day.
Finally, I like to come with a list of questions prepared, and I’m always ready to discuss any changes in my health that have occurred since the previous meeting.
Having some sort of support system present can be essential when navigating new information. Having a second person available to both receive information and ask clarifying questions is an invaluable tool. I was fortunate to have my parents with me throughout the entirety of my PH journey. They remain involved in my healthcare, but have also provided me with a wonderful model of how to begin taking more ownership of my care through adulthood.
Clinic visits can be exhausting and overwhelming, but there are considerations that can help to alleviate some of the stress that comes with the tests and the discussions. Even after years of these routine experiences, I still find myself anticipating clinic visits with an expected level of anxiety. I work to counteract this simply by having grace for myself in the days surrounding the appointments.
I also make an effort to remind myself that the appointments don’t inherently change anything about my health; they simply provide my team and me with the information needed to move forward with my care in the best manner possible.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.