As I sit down to write my column for BioNews, the parent company of this website, I think about you, my readers. While I strive to write about various topics, I hope to touch on ones that people within the pulmonary hypertension (PH) community will find relatable.
This week, I found inspiration in my gratitude journal.
As I closed it, the quote on the cover, by Holley Gerth, spoke to me. Yes, I have read it before, but for some reason, it was like a fortune cookie this time: “Be courageous and write in a way that scares you a little.”
Lifting COVID-19 restrictions scares me
Because I had already planned to write about some of my current fears and anxieties, this quote was a perfect inspiration. Several U.S. states, including Texas, are beginning to lift COVID-19 restrictions again. Those of us with rare diseases are in the high-risk group for having serious complications from the disease.
Despite taking necessary precautions, my husband and I developed COVID-19. I needed hospitalization, as the virus affected not only my PH but my chronic kidney disease, too. I wasn’t expected to come out on top of this. But thank God for prayers and miracles, because now I am home and slowly recovering.
Like everyone else, I’m ready to get out and live my life as we move past this pandemic. But I want to do so when I know it is safe, and not just because the mask mandate has been lifted in my state. Like y’all, I’ve lost loved ones, missed celebrations, and much more this past year.
One of my greatest fears is to lose a loved one without seeing them.
My PH team and I will make the decision
Last week, my PH specialist told me he is not in any hurry for me to be vaccinated. He explained that his PH and heart failure patients who are still recovering from severe COVID-19 have experienced worsening symptoms after being vaccinated.
I realize that everyone is different, and this possible phenomenon has not been formally studied. In the Pulmonary Hypertension News Forums, we have been discussing this topic for some time. I was always on the fence, but after talking with my PH team, I know that we are doing what is best for me.
That is OK. Like PH treatment plans, vaccination decisions are individualized, too.
This has been a long and slow recovery. I’m grateful to be alive as I continue to thrive. But the idea of contracting COVID-19 again without the ability to PHight through it scares the hell out of me.
Fear of the unknown
I also fear the unknown, including the various unknowns regarding COVID-19 that most medical teams can’t explain. Because COVID-19 is so new, we all lack the data necessary for knowing many of the virus’s long-term effects.
I continue to experience neurologic effects daily, such as memory loss, brain fog, tremors, and spasms. My oxygen level continues to dip lower than before, despite using continuous supplemental oxygen.
We all must remember that courage and fear can coexist. In reality, courage cannot exist without fear. Let’s be courageous despite our fears and continue to PHight together.
What scares you despite your courage? Please share your thoughts in the comments below.
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.
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