Going back to the hospital in Fairfax, Virginia, felt in some ways like returning to the scene of a crime. I walked by the gift shop, toward the elevators that would take me down to the basement to Pulmonary Diagnostics. I couldn’t shake the sense that I had left something here, or that coming back nearly a year-and-a-half later would provide me with some understanding. The reason for my return: A checkup with one of the doctors who diagnosed my pulmonary hypertension.
Rest assured, this is not my first checkup since getting my diagnosis in April 2016. I have been through respiratory rehab and multiple tests and checkups with a different care team. Restrictions with my insurance carrier prevented me from seeking recovery care at the Fairfax hospital, so I had to manage my new diagnosis with my pre-diagnosis doctor. But I never felt truly comfortable with this care team because of our history and the long, delayed journey we took that led to the hospitalization and the PH diagnosis.
These doctors were risk-averse, managing my symptoms as if this was a severe case of asthma, despite telling me about the possibilities of a right heart catheterization procedure. I feel like my threshold for pain management is fairly high and, at the time, I was anxious to do any procedure that would bring me answers to why I couldn’t walk more than a block or two without gasping for air. With these doctors, I never felt like I had a good appointment. I suppose “good” is a relative term when you’re fighting a chronic illness, but I would think every appointment could include a sign of progress, or a sliver of silver lining. However, I often would leave those conversations feeling as if there was nothing left to do but wait. Wait to pick up my prescriptions. Wait until my next X-ray, blood test, or echocardiogram. Wait for the sting of hypoxia. Just wait.
There I sat, waiting for the reunion with my diagnosis doctor now that I possessed an insurance policy compatible with the hospital. An odd sense of familiarity had come over me as I moved throughout the hospital from test to test. I even texted my mom to say how much I liked this particular hospital. Maybe I was trying to lull myself prior to talking with the doctor so that I didn’t feel so anxious about what he would say. The last time I was here, I was told about my life-changing diagnosis and … I mean, what else is there to say about a rare disease with no cure?
Thanks to electronic health record summaries, the doctor was able to track my progress in the time since I last saw him. He asked many of the standard questions, had remembered that I worked on Capitol Hill, and had good recall of my prior patient scenario. I also felt like I was being heard.
I asked the doctor what it meant when my previous pulmonologist interpreted my last echocardiogram in a manner to say he saw no PH present. I assumed the exam showed that the medications were keeping the pulmonary arterial pressures down and they weren’t heightened to cause any heart failure. The pulmonologist said that was more or less correct and moved on. But the doctor for my latest checkup took the time to explain it further. He pointed out that the average pulmonary blood pressure was somewhere between 10-20mm Hg. The echocardiogram from this past spring showed my pressure to be around 40mm Hg.
This obviously puts me in the range for PH, and I began to feel worried, and I wondered why I wasn’t on stronger medication to bring the pressures down even lower. But then the doctor informed me that at the time of my hospitalization my pulmonary blood pressure was more like 90mm Hg. Learning this for the first time provided a sense something I had been struggling to find lately. Perspective.
A lack of perspective can do a lot of damage. It can promote unhealthful behaviors, sever relationships, and make it difficult to set goals or to see a bigger picture.
The doctor and I kept talking. He said we’re doing everything necessary to manage the PH. Since my PH is idiopathic, we discussed monitoring for interstitial lung disease, and he encouraged me to stay active and exercise when possible. We scheduled follow-up appointments.
As I left the hospital, I could feel that sense of waiting creep in to tell me that the treatment plan is all well and good, but it’s nothing more than a Band-Aid for a bullet wound. While there is no denying that reality, I think back to my pulmonary arterial pressure levels and the importance of perspective.
I like my doctor. I have affordable insurance, and I just had a good appointment.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.