Why I’m Feeling Grateful During the COVID-19 Pandemic
Self-isolation has become a form of survival for those with pulmonary fibrosis during the COVID-19 pandemic. I am a single-lung transplant recipient and have a compromised immune system. COVID-19 can devastate a perfectly healthy person, and someone with my current state of health is at even greater risk.
The self-isolation part of the pandemic hasn’t negatively affected me, but I do love to spend time outdoors. Unfortunately, in Cleveland, Ohio, where I live, this time of year sees fluctuating weather patterns that don’t cooperate with going out in the elements. This leaves me with an endless amount of time to think about the past, and how grateful I am to still be on this earth.
I recently celebrated my 52nd birthday and am approaching the five-year anniversary of the milestone of receiving a lung transplant. In the early months of 2015, I wondered what the future would hold for me. I am a positive person, but at times, my thoughts wouldn’t allow me to be as positive as I would have liked. I had many lonely periods, even with my wife by my side.
One constant has been true in my life since my diagnosis: I have always been a passionate advocate for pulmonary fibrosis awareness and lung transplantation. I was made aware of the possibility of transplantation by the physician who diagnosed me with idiopathic pulmonary fibrosis. Now, I am able to advocate in a formal setting by writing columns and moderating the Pulmonary Fibrosis News Forums.
I am fortunate to have received this opportunity a little over a year ago. My gratification for this position comes from the ability to help others. It is a wonderful feeling when you know you have made an impact on someone else’s well-being.
I don’t think I can show enough gratitude to the medical professionals who have given me care and recognized my need for a lung transplant. I often hear of Pulmonary Fibrosis News Forum members and other pulmonary fibrosis patients state the difficulties they encountered when they initially sought treatment for their lung disease.
My diagnosing pulmonologist, Dr. Leslie Tolle, is well-versed in interstitial lung disease pathobiology. Because of the way this disease manifests in the body, it can be difficult to diagnose. From the initial appointment through transplant, Tolle was a major factor in the success I currently have.
Dr. Marie Budev is my current physician and the medical director of the Cleveland Clinic’s Lung Transplant Team. She is considered one of the top physicians in her discipline. Amazingly, she tells me she is grateful for having me as a patient. She appreciates that I comply with her mandates and instructions for post-transplant living. Most of her mandates are quite simple to adhere to. I am grateful for the knowledge she possesses and the thoroughness of her appointments.
April is National Donate Life Month. The procurement organization in my locality is Lifebanc. It takes a special kind of person to work in a lifesaving procurement organization. I encourage everyone to register as a donor. I am grateful for this organization and to my unselfish donor and their family for giving me this second chance at life.
For readers who are pre- or post-transplant, this week is Transplant Nurses Week. Please give your nurse a message of thanks. I am sure they will appreciate the gesture, especially during this stressful time.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
Comments
Scott Muir
I have PF, idiopathic technically but received Bleomyacin and radiation in 2012. Diagnosed in November 2019 with IPF, started oxygen in February. Now my levels are difficult to keep above 75 when exercising at all. I will be seeing my pulmonologist on may 7th at Mayo Clinic (about an hour from my MN home) and have an assessment for a lung transplant. I am a 57 year old male. Hoping for some answers then!
Until 2 weeks ago I was working 12 hour shifts in a food packaging plant. I finally decided that I just can’t do it any more and applied for short term disability. It’s been a rough decade with cancer, a pulmonary embolism, and now this! I’ve never collected any type of assistance or unemployment in my life and am horrified to ask for disability now, I do it for short term through my employer so I can keep my insurance for now (then after 6 months go to long term for 1 year).
I find isolation a welcome change in part, I do miss the people at work but for 2 weeks now I have been finally able to relax and “catch my breath”.
Thank you for the article! It helps to know that I am not alone.
Mark Koziol
Hello Scott, thank you for reading and commenting. Sorry you are having to go through these medical issues. Relax as much as you need, and Scott you are not alone. I am happy to see you are sched to be evaluated for a lung transplant. It was a life changer for me. I know you are a member of the pf forum and if you have any questions pertaining to transplant or anything else, please ask. Take care, Mark.
DOCTOR DON
Good AM Mark. I’m Don (aka Dr
Don) and I’ve posted comments before. I’m a 65 yo eye surgeon who is now grateful i can look for the right fit for a potential future transplant location. Diagnosed w/IPF 18 months ago. Stable. Decided to retire soon. Grateful i can spend time on ME. The doctor in me may want to get involved in pulmonary issues—who knows. Your pulmonary person up in Cleveland sounds great. I’m leaning towards either Phoenix or Gainesville or maybe NC. Never been to Cleveland. Right now I’m very stable (well my lungs are anyway!!!!). Still can take a hike. And Scott i too and on partial disability. Ever since COVID started 7+!weeks ago—no office STRESS and without a doubt My IPF is less bothersome. OFEV has been helpful I suspect. Thank you Mark for being there. Inspirational.
Doctor Don