Receiving Care During a Pandemic: Quinlan Folkestad

September 03,2020

The COVID-19 pandemic has affected so many people in so many ways. It is hard to think about how it has affected me as a patient with pulmonary arterial hypertension (PAH). I can remember the first thing I worried about. How was it going to affect my care? Could I still see my doctors? Will my medications still come on time? What if I get the virus, how will my family support themselves?

This kept me from leaving the house and I called my pharmacy often to make sure my medications were on their way. I counted individual pills in case there was a delay. My anxiety was through the roof! There seemed to be no comfort. For weeks we didn’t go anywhere we didn’t have to, and I stayed home more than ever. We didn’t see friends or family. Birthdays were bleak and the walls started to close in. Then as time wore on the shutdown and restrictions started to become a way of life and I found myself able to adjust to the new normal.

Then it happened. A common side effect I deal with is low potassium, due to my need to take strong water pills to keep fluid from building up around my lungs. I had been having a home health nurse come out to my house to draw blood and monitor my potassium levels, but now I needed to go to the hospital. The hospital is the one place I avoid at all costs in the best of times.

My doctor met me in the emergency room and said I would need an infusion of potassium over four hours. Between the painful infusion, the masks, and summer heat, I had never been more uncomfortable. If my levels didn’t come up, they would have to admit me, which meant more chance for exposure and days of painful infusions. Finally after hours of infusion my numbers were good enough to go home and rest there. This happened two more times, and each time I was certain I was doomed to be admitted. I was sure I would catch the virus, but I managed to always recover enough to stay at home, thank goodness.

I still worried about getting the virus and knew that if I did contract it, it would be more serious for me than some others. Then, I had to get a knee surgery and suddenly I was forced to go to one of the most hard-hit cities in my state. I tried not to let on, but I was nervous. I can remember sitting in my car waiting for my pre-op COVID-19 test praying that for once I would fail a test. A positive test would not only cancel my long-awaited surgery, but it could land me and my family in quarantine which would have been disastrous for my mental health and my health overall.

After two days of isolation I sat in the waiting room awaiting my test results. Again, I prayed it was negative. I had traveled too far and waited too long for this procedure. I needed my knee fixed. It hurt all the time, which affected other parts of my body as well as my mobility. Then, the nurse came out and said my test was negative! I never thought I would be excited for surgery.

While my family and I have not contracted the virus, it still weighs heavy on my mind and I worry every time I have to go out. My kids start school soon and we are in a position where they must attend public school. While I am less worried than before, I am still worried. This is a scary new world we live in and we have to learn to cope or it will swallow us whole.

As a patient with PAH I know the virus could be disastrous for me, but I try to stay positive and look for the good things. Like my favorite shops opening back up, death rates are decreasing in some places, and the excitement of my kids for a new school year. COVID-19 may be here to stay, but that fear doesn’t have to control us.

Quinlan received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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