Confronting My Fear of a Lung Transplant Because of CF
The thought of receiving a lung transplant can prompt a range of emotions
Fear often triggers one’s fight-or flight instincts. Depending on the circumstances, when it happens to me, I’ll either persevere through an unwanted situation or become paralyzed by fear. When I become frozen, I don’t want to do anything, and I let the fear caused by the situation just flush over me.
One of my biggest fears is something that’s pretty common for people with cystic fibrosis (CF): having a lung transplant and rehabbing afterward.
What CF feels like
A popular blog post by the Cystic Fibrosis Foundation describes having cystic fibrosis as like breathing through a coffee straw. I wouldn’t exactly describe it like that for me, as everyone with CF is different. But the coughing fits I have make me really struggle to catch my breath. That’s when it feels like breathing through a coffee straw for me.
I think I’d describe CF as more like breathing with two 50-pound dumbbells on my chest. It can feel like my entire body is compressed against a wall.
I don’t exactly have anything to worry about, though, as my FEV1/FEVC ratio numbers — which measure a person’s vital lung capacity — are in the 80s. That would be considered great for most people with CF, and it is well above the numbers that would lead to consideration for a transplant. My fear, though, is that as I get older, my breathing will drastically decline at a rapid rate.
The statistics for lung transplant are quite impressive for people with cystic fibrosis. According to the CF Trust, nine out of 10 people survive a lung transplant, and most survive the year after the operation. About half survive another five years, and many survive for 10 years or more. The process isn’t exactly foolproof, but the survival rate is exceptional.
So why am I worried? Why am I afraid of having a lung transplant?
I think it comes from the usual cause: a fear of the unknown. I’m scared to have someone else’s body inside my own. I’m scared my own body won’t respond well to change. I fear I would let down the loved ones of the person who donated their lungs.
Ultimately, my fears are probably unwarranted, at least for now. Hopefully, my breathing will continue at a level in which I don’t need a lung transplant.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Anthony Palmiero
Love you Will. Love Tony
William Ryan
Love you too, Tony!
Helen Palmiero
Hi, Will! Your articles are always of great interest to me - their content, your style of writing. Please excuse my response today as I have to deviate from CF to other lung issues I'm more familiar with - like my lung cancer and COPD. When I was 1st diagnosed about 12 years ago (!), I had a terrible fear of the unknown. During these years of treatments, I received new treatment options that were developed and my confidence in my future has greatly increased. There are, as you know, changes for the better occurring very often in CF treatment also and I pray you can get a feeling of comfort from that which will somewhat allay your feelings of the unknown. My breathing is also compromised and is getting worse (loss of breath, almost unstoppable, very hard coughing), so I made an appointment to see a pulmonologist in about a week and am confident he can help me - maybe with newer treatments as well. Your article touched my heart and we WILL get through this. Much love, Helen
William Ryan
Helen, we definitely will get through this! I am so happy of the advancements in health, science, and tech that have been made and I am beyond lucky and privileged to know you. Love you too!
Kelly McLain
William, as a mother of a 43 year old CF son who had a double lung transplant almost 5 years ago I can nearly guarantee that you won't ever need a lung transplant. With your 80% lung function and the wonderful CF corrector medications available now (hopefully you are on one of them...Trikafta, Orkambi etc.) and with continued advancements in CF care, people who have high lung percentage numbers like you probably won't experience the lung failure that so many in the past experienced. Make sure you are being treated at a CF Center that has excellent doctors. If you aren't sure you are receiving excellent care call the Cystic Fibrosis Foundation and ask for their guidance. Do your treatments and live your best life. Don't worry too much because CF care just keeps getting better and better as the years go by. Good luck to you and keep writing your excellent blogs.
William Ryan
Thank you for the really kind words, Kelly! I really appreciate it!