The Pandemic Is Stealing My Already Limited Time

The Pandemic Is Stealing My Already Limited Time
4.6
(30)

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.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
×
Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
Latest Posts
  • anxiety, appointments, Rare Disease Day, patient experience, wish list, goals, community, IPF cough, anxiety, holiday season, life lessons, story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity
  • anxiety, appointments, Rare Disease Day, patient experience, wish list, goals, community, IPF cough, anxiety, holiday season, life lessons, story, cold temperatures, toxic positivity, peer support, before and after, exercise, power outages, productivity
  • COVID-19, time, clinical trials, Rare Disease Day, Donnie Vapor, mask, why
  • COVID-19, time, clinical trials, Rare Disease Day, Donnie Vapor, mask, why

How useful was this post?

Click on a star to rate it!

Average rating 4.6 / 5. Vote count: 30

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

9 comments

    • Charlene Marshall says:

      Soon Jill, hopefully soon! That is the hope I am hanging on to… and that hug will feel so good. Thank you for reading my columns!
      Charlene.

      • Janey Henderson says:

        Hi Charlene, I feel same way you do. I miss my nephews & their little one’s so much. From today I can meet a group of 6 or 2 households as long as we stay outside. Lockdown has played havoc with my Mental Health. But the weather here in England has been great today which always raises my spirits. Can I ask what your feelings are about a lung transplant?

        • Charlene Marshall says:

          Hi Janey,

          Nice to hear from you again, thanks so much for reading my columns and reaching out via the comments. I’m sorry you can relate to the frustration of missing loved ones, and having to visit from a distance. Someday, this will all be behind us! I’m glad the weather is getting nicer, as this helps make outdoor visits easier and contributes positively to our mental health. We need it here too!

          My feelings about transplant are pretty positive, so I always want to be mindful in sharing them with others and hold space for those who might not want to pursue it. I’ve seen the drastic shift in quality of life a transplant can give IPF patients, so if they feel like they could endure the surgery and have adequate support, I do always encourage people to look into it. From there, if they gather all the information with their medical team and they choose not to pursue it, then it is an informed decision at least. Does this help? 🙂
          Char.

  1. Jill says:

    Hi! Thanks for sharing! Just wanted to say that here in the US the guidelines from the cdc seem to say visiting your nephews, and hugging them, will be fine once you’re two weeks post final shot, unless they have health issues. I know I’m hugging and visiting my family again and it’s wonderful.. since they’re young and healthy or fully vaccinated.

    https://www.cdc.gov/coronavirus/2019-ncov/vaccines/fully-vaccinated.html

    What’s Changed
    If you’ve been fully vaccinated:

    You can gather indoors with fully vaccinated people without wearing a mask.
    You can gather indoors with unvaccinated people from one other household (for example, visiting with relatives who all live together) without masks, unless any of those people or anyone they live with has an increased risk for severe illness from COVID-19.
    If you’ve been around someone who has COVID-19, you do not need to stay away from others or get tested unless you have symptoms.
    However, if you live in a group setting (like a correctional or detention facility or group home) and are around someone who has COVID-19, you should still stay away from others for 14 days and get tested, even if you don’t have symptoms.

    • Charlene Marshall says:

      Hi Jill,

      Thanks so much for reading my columns and reaching out via the comments. I appreciate this information! I’ve not yet received both doses of the vaccine and likely won’t for a couple of months yet as our process changed here. I am happy to have the first one though! Also, the majority of people where I live haven’t been vaccinated yet, so I can wait a bit longer for the greater good. Hopefully not too much longer though 🙂 Providing these guidelines are really helpful, so I appreciate you taking the time to write these out for me.
      Char.

  2. Raymond says:

    I wouldn’t let one nurse dictate my life. What she told you is not established. I’ve been vaccinated ( both Pfizer shots) and my pulmonologist has said to live as I wanted. His position is that the vaccine works, and antibodies work. In our area, the mask mandate is gone, yet infections are down. But I live in a very red county in a very red state (Tennessee). Freedom still matters a lot to us. My grandchildren are going to a private school, visit every weekend, and my grandson is playing baseball. His games begin in about 10 days, and I plan on going.
    There’s a physician on the web who is an infection control specialist, and his summation is “vax and relax”.

    • Charlene Marshall says:

      Hi Raymond,

      Thanks for reading my column and reaching out via the comments. It seems that everyone, including physician, opinions still differ on this as I’ve heard several pulmonologists also say to remain vigilant after the vaccine. Yes, we are protected (after both Pfizer shots) but we can still carry it asymptomatically to those who are not yet vaccinated. I will definitely relax more and enjoy my friends and family once the majority of the population is vaccinated, which isn’t the case yet where I live. I don’t trust physicians “on the web” and am happy to continue wearing masks, etc. until majority of people are vaccinated. I can wait a little longer, we’re on a good vaccinating course now so we’re almost there. I’m glad you’re doing what makes you comfortable.
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *