Avoiding Isolation as the Pandemic Rages On
The federal transportation mask mandate has been extended through May 3. The city of Philadelphia has reinstated mask requirements in public indoor settings. People in the U.K. are watching the spread of a new recombinant COVID-19 variant. The Chinese government has reportedly implemented either full or partial lockdowns in multiple cities to stop the spread of the virus.
Some news outlets proffer that this is year three of the pandemic. It has been two years and one month since many of us first had to isolate. Some early predictions said it would pass by summer 2020, but 25 months later, new variants still lurk in the shadows.
Isolation and PF
Isolation has always been important for the pulmonary fibrosis (PF) community, but it’s especially critical amid a pandemic. Pre-transplant PF patients need to protect their compromised lungs, and post-transplant patients, who are generally immunosuppressed, must avoid compromising their new lungs.
Since the pandemic, many medical appointments have been held via telehealth, and many support groups started meeting virtually instead of in person.
Social media platforms offer some level of connectivity with our communities. Unfortunately, these platforms can prove divisive, with people arguing about the COVID-19 vaccine or sharing false information about the virus.
Filling the gap
The PF community’s need for meaningful connections amid our physical isolation led to the creation of Coffee Among Friends, a support group without guest speakers or an agenda. It fills a gap between the monthly support group meetings led by the Inova Health System here in northern Virginia.
The group’s first meeting was in March 2021. In January 2022, Coffee Among Friends was added to Pulmonary Fibrosis Foundation‘s list of virtual support groups.
Conducted via Zoom, the meetings have a casual coffee shop vibe. Visualize a group of friends gathering for coffee. The conversations are candid, casual, and comfortable. Attendees may be patients, caregivers, or concerned friends or family members, but we’re all there to seek advice, ask questions, and learn from one another’s experiences.
Among the patient attendees, there is a blend of pre-transplant, post-transplant, and palliative care patients. Caregivers may be new to the PF world or more seasoned. We’re averaging 16 attendees per meeting this year.
Support groups as self-care
Before COVID-19, I regularly attended support group meetings in person, but the virtual meetings have been especially helpful to me since the pandemic. The presentations are important, but the group’s camaraderie is equally so.
Groups like Coffee Among Friends offer a break from the isolation. Although we don’t meet in person, we have the opportunity to engage in conversation that isn’t structured or forced. It’s a level of interaction many of us have missed.
I recently completed a certification in Mental Health First Aid (MHFA). According to the National Council for Mental Wellbeing, MHFA “helps you assist someone experiencing a mental health or substance use challenge or crisis.” A portion of the course covers self-care for the responder, and I realized that’s what I experience with Coffee Among Friends. The group is my self-care.
Support groups not for you?
Some people prefer to remain more invisible. Coffee Among Friends doesn’t require you to be on camera, but if you prefer a different type of interaction, there are alternatives.
Have you considered the Pulmonary Fibrosis News Forums? You can participate in any conversation that interests you or simply follow along.
Ask questions in the forums. People from around the world will join the discussion. Among the forum moderators are names PF News readers might recognize, including columnists Christie Patient and Charlene Marshall.
The bottom line
We can’t let COVID-19 isolation hold us hostage. Look for creative ways to be involved with others. Support group meetings are social events for me. Find what is right for you. It can be support groups, forums, or something totally different. You have the opportunity to make every breath count.
What have you done to avoid isolation during the pandemic? Share your solution in the comments below.
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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Comments
Debbie Dupree
I appreciate your comments around making isolation more about introspection. I enjoy planned zooms and phone calls as well. I also teach online and mentoring students makes a big difference in my sense of connection. I am also very social and yet have learned to appreciate introspection.I have recently been diagnosed with pulmonary fibrosis( about 6 mos ago) and am into the early moderate stage. I still see my grandchildren and son, daughter in law and a few friends. I have not been advised by my doc not to do this. I have even planned as small trip by plane. I wear a mask when in the grocery store or outside around groups and am fully vaccinated and boosted.
I am wondering if your precautions are more specific to pre and post lung transplants or if you are speaking about all individuals with a pulmonary fibrosis diagnosis.
All of us have gone through great caution with COVID but it seems that where we are now with Covid is better than where we once were in terms of severity of symptoms with these new variants and the fact that many of us are vaccinated and boosted.
I am still learning about the lifestyle changes with this diagnosis.
Any input from you or others would be appreciated.
Samuel Kirton
Hi Debbie,
Thanks for reading my column and your comments.
You are absolutely correct that my precautions are based on my pre-transplant and post-transplant guidance from my care team. Originally diagnosed in Jan 2017, my wife and I traveled right up to March of 2020. My care team encouraged us to live life.
Since March of 2020 when I completed transplant evaluation I was deferred from being listed but on the advice of my care team isolated early in the pandemic. Almost a year later I was listed as my condition continued to deteriorate. In July 2021, I received a bilateral lung transplant. My precautions continue as I am now immunosuppressed. I have received three doses of Moderna and the Evusheld infusion. I will take the 4th dose of Moderna when I am eligible.
Trust the guidance from your care team and make every breath count.
Sam ...