The news of organ transplants being paused at several medical centers around the world amid the COVID-19 pandemic is deeply troubling. As a patient living with idiopathic pulmonary fibrosis (IPF), I’m concerned, because ultimately, a lung transplant will be the only thing to save my life.
I also am anxious and unsettled about the many patients I know and love who are awaiting their own gift of life. I can’t help but wonder what might happen to those of us who are declining in lung function and overall health if this pandemic continues for many months. The mere thought is overwhelming.
Since my own diagnosis of IPF nearly four years ago, I’ve had many conversations with others about how I will be “cured” of this disease. Most of those conversations lead to educating others about lung transplantation and the importance of organ donation.
What I continually hear is that people think transplant is a cure; that my life will no longer be an uphill battle of finding balance between normal life and medical care. Unfortunately, this isn’t the case, because lung transplantation comes with its own unique set of challenges.
While the journey of waiting for lungs may be tough physically and emotionally, I am not naive to the difficulties that lie ahead after surgery. However, those struggles would be a new challenge that I would welcome with open arms.
I desperately want to be able to breathe freely and not rely on supplemental oxygen or deal with the pain, exhaustion, and shortness of breath that this cruel disease causes. I know my fellow patients can relate to the prolonged difficulties these symptoms cause physically, mentally, and emotionally.
My days are filled with frustration and sadness. Like many, I feel the deep anguish and grief caused by COVID-19. Additionally, I long for healthy lungs that function normally. Once I’ve been given that gift of life, I promise I’ll never take it for granted. In exchange for healthy lungs, I’ll do everything I am supposed to do to care for them.
Following is a list of things I am committed to doing after lung transplantation:
- I will be compliant. Along with educating others about the process of lung transplantation, I also will explain the commitment involved in taking care of new lungs. It is critically important that post-transplant patients are compliant with their exercise regimen and taking anti-rejection medications. As a result of intricately knowing the struggles of having lungs that function poorly, I vow to do everything I can to keep the gift of life I receive as healthy as possible in my body. I will be compliant (likely over-compliant) to protect the gift I have been given.
- I will never take this gift for granted. When I was newly diagnosed with IPF, I sought quotes to help me cope with the turmoil. One of my favorites, attributed to E.J. Lamprey, was: “You know all the things you’ve always wanted to do? You should go do them.” I plan to use this as my mantra post-transplant. I won’t waste any opportunities to travel and cross items off my bucket list.
- I will advocate for the importance of organ donation. I already am a strong advocate for this cause. However, I know that statistics show there are not enough organs for everyone who needs them. So, we can always advocate and do better. There is a beautiful story about one of my personal heroes, Canadian hockey player Logan Boulet, who lost his life in a bus crash at 21. His parents started the “Logan Boulet Effect,” which helps to convince people to become organ donors. His story has caused a surge in the Canadian organ donor registry. Personal stories make a difference, and I plan to use mine to advocate for the importance of organ donation once I get through this.
- I will help educate and mentor others. The Lung Transplant Foundation has a mentorship program for those who have endured transplant to assist those who are about to go through it. I believe this would be such a rewarding opportunity to help others, and I look forward to learning more about becoming a mentor post-transplant.
The struggle of living with IPF and compromised lungs continues, and difficulty breathing causes deep frustration these days. I just want new lungs, and once given that gift of life, I’ll do everything to protect them.
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.
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