After being diagnosed with a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), many patients reluctantly accept that their life span will be shortened. Even if we’re lucky enough to receive a lung transplant, it isn’t a cure, and it essentially swaps the management of one chronic illness for another. However, the latter can certainly improve quality of life.
While the U.S. Food and Drug Administration has approved two therapies, Ofev (nintedanib) and Esbriet (pirfenidone), to slow IPF progression, ultimately, nothing can stop the development of fibrosis in an IPF patient’s lungs.
It’s difficult to determine whether progression will happen quickly or slowly. A 2010 study published in the American Journal of Respiratory and Critical Care Medicine found that IPF patients survive an average of two to three years after diagnosis. Despite this prognosis, I know many people who have survived much longer.
Doing everything possible to take care of oneself, such as eating a well-balanced diet, exercising, eliminating stress, and avoiding germs, can help a person live physically well with IPF.
But avoiding germs can come at a cost, especially during the COVID-19 pandemic. For many of us with IPF, this has meant staying away from friends and family, essentially extinguishing our social life over the past year. While this might be important for our physical health, it can cause our emotional and mental health to suffer.
I haven’t hugged my nephews in over a year. It’s the one thing I want to do more than anything, but it turned out I was wrong to think I could do so after being vaccinated.
Last week, I received my first dose of the Pfizer-BioNTech vaccine, and I was overcome with emotions when I sat down for my jab. The nurse asked if I am scared of needles, to which I replied no. I told her I was overwhelmed with gratitude, relief, and excitement at the first step toward some sort of post-pandemic normalcy.
I told her I couldn’t wait to hug my nephews, the first thing I wanted to do after receiving the vaccine. She looked at me soberly and shook her head. I clarified that I knew it had to be after my second dose so I would be fully vaccinated, but she still shook her head no.
Vaccinated people can still contract and spread the virus to others while potentially being asymptomatic. The nurse reminded me that even when fully vaccinated, it’s still important that I protect those who aren’t and do my part to remain socially distanced.
My tears of gratitude, relief, and excitement had dried up by this point, but I started to cry again when she told me I still couldn’t go hug my nephews. This time, they were tears of sadness. The pandemic was stealing even more of my already limited time with them.
I have always loved receiving pictures of my nephews and have many framed throughout my house. However, it’s been hard to receive photos this past year because the boys have grown so much, and I feel as though I’ve missed it.
I haven’t been able to take them out individually to celebrate their birthdays, watch them open their Christmas gifts, or spend a full day with just us at the biggest amusement park in our country, a tradition we started when my oldest nephew was 4.
Thinking about what I have missed this year makes me sad, and I can’t wait to be with them again.
For some, the loss of a year with loved ones may be insignificant because there are still ways to see them, such as via FaceTime or Zoom. But missing an entire year is a big deal for those of us with a chronic disease like IPF that will cut our lives short.
Since my own IPF diagnosis in 2016, I’ve focused more on quality moments than the quantity of moments. This is one of the gifts IPF has given me, and I hate that the pandemic is stealing opportunities for me to have that quality time with my nephews. I’m sure many others feel the same, even if they don’t have a chronic illness, as we’ve all been isolating together.
We are almost through this. Hang in there, and think about how satisfying that first hug will be. That is what keeps me going.
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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