Reflecting on an eventful August, for my column and my health
Newly diagnosed cardiac issues require coordination with my care team
What an interesting month August has been. Regular readers of my column may recall that the month started with a discussion of a new comorbidity in my post-transplant world. In subsequent columns, I wrote about how to explain your chronic illness, responding when opportunity knocks, and sharing your last wishes.
I feel like my last entry for the month needs to outdo the others.
Addressing my cardiac issues
I had an appointment with my cardiologist, Dr. Behnam Tehrani, on Aug. 17 at Inova Fairfax Hospital in Virginia. When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, it was the beginning of an adventure like none I’d ever experienced. The battery of tests and bloodwork was daunting but very necessary. One of those tests was a double cardiac catheterization.
I was originally approved for a lung transplant in March 2020 but deferred. COVID-19 was just becoming widely recognized, and I was better off not entering the hospital at that time. In March 2021, the time had come to list me for transplant. It was necessary to redo some tests to ensure the results still supported a bilateral lung transplant. Tehrani performed another cardiac catheterization.
Now, two years post-transplant, during a routine echocardiogram (ECG), the radiologist noted that my aortic regurgitation — when the heart’s aortic valve doesn’t close tightly — was moderate and referred me to my cardiologist for an assessment.
While my aortic regurgitation should continue to be monitored, it has been unseated as my primary cardiac concern. Tehrani noticed an ascending aortic aneurysm measuring 4.8 cm on the echocardiogram results. A normal aorta is approximately 2-3 cm. Anything wider is considered enlarged, and surgical intervention is generally considered appropriate at 5.5 cm in men.
To ensure a more accurate measurement, Tehrani ordered a magnetic resonance angiogram (MRA) — a type of MRI that looks at the blood vessels. Because of my stage 3B chronic kidney disease, the use of contrast is contraindicated, as it’s hard on the kidneys. It’s interesting to note that my kidney disease resulted from medications I take post-transplant.
Now what?
On Monday, Aug. 21, I had the MRA at Inova Fair Oaks Hospital. Like an MRI, it was very loud. It’s the only medical procedure I’ve ever undergone where hearing protection is standard.
It took a little over an hour to complete, but in full disclosure, technicians had to let me take a break twice. The exam required me to hold my arms extended above my head. Since my bilateral lung transplant, which was conducted via sternotomy, it’s difficult for me to do so for an extended period.
One of my flaws (I can see your shocked look) is that I obsessively check MyChart, the patient record system. My results were posted on Tuesday morning, and shortly after, I received a call from Tehrani confirming that the measurement of 4.8 cm was accurate. Previous measurements from ECGs indicated my aorta had grown from 4.4 cm over the past several years. At this point in the conversation, we took the next step and developed a plan.
Tehrani referred me to Dr. Daniel G. Tang, a cardiothoracic surgeon. For those who read my column regularly, his name may be familiar. Tang performed my bilateral lung transplant in July 2021.
I exhaled.
I knew the surgeon and his work. I am living proof of his expertise. I have an appointment with Tang on Sept. 11 for a 90-minute consultation to refine the plan. Although there’s a sense of urgency, I’m not panicking.
For more than seven years, Inova has taken care of my health. I was really struggling with this latest challenge, so I allowed myself some time for a pity party. It was a short party, and attendance was limited. I recalled a journal entry from shortly after my diagnosis. My mantra, “be positive in all things,” was a great reminder in this situation.
While my cardiac issues aren’t directly related to my transplant, they must be addressed in order to protect my donor’s gift of these beautiful lungs. Working closely with my care team to develop a plan is how I continue to make every breath count.
Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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