Slowing down after transplant to smell the roses — all 65 of them

It’s utterly amazing to be able to breathe easily again, almost four years after having a double-lung transplant due to advanced cystic fibrosis (CF). It isn’t easy to put the enormity of the feelings into words, even now. Besides the vague discomfort from a scar that runs from armpit to armpit, most days, I could almost forget that these are not my own lungs, due to the ease of my breath.

I surely remember the long wait for new lungs, the physical struggle of my failing lungs, and the deconditioning of my body during that time. I remember waking up from surgery, the extubation, and some of my time in the intensive care unit. I recall the mild hallucinations I experienced, my first walk in the hall while connected to a plethora of intravenous pumps, and the chest tubes being removed one by one over 14 days. I vividly recall lying in my hospital bed at night, completely flat, and oddly being able to breathe without jagged coughing spasms. I remember whispering, “Thank you, God, and thank you, donor.”

Since then, I have been blessed with only a few minor bumps in the road so far, and I thank God and my donor before falling asleep each night. Upon waking each morning, I pause for a few seconds before getting up and acknowledging that I’m breathing clearly, which leaves me in awe.

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While my lungs are currently doing well, the rest of my almost 53-year-old body feels 65 or older. CF has taken a toll on my internal organs and joints. Transplant medications are taking their toll on my memory, blood pressure, and other things. Menopause is wreaking havoc on my thinning hair, temperature regulation, and mood. Though not by society’s standards, I still feel like I am at retirement age.

Due to CF and transplant, I almost welcome these aches, pains, and changes with gratitude because I’m alive. Every day is a gift, as tomorrow is never guaranteed.

Life’s rich pageant

Because of all of this, I start each morning with what has become something of a ritual:

• I don’t set an alarm, and I let my body wake up when it is ready.
• I spend a few minutes lying on my back with my eyes open, looking out the window next to me, just breathing. I slowly breathe in and out while being grateful for another morning.
• I sit at the bedside, check my vital signs, and do simple, slow stretches with my arms and torso for a few minutes.
• I sip on my morning coffee while watching birds jockey for a turn at the bird feeder outside my living room window. I notice all the nature I can see: the movement of the trees, the types of clouds, the flowers, and the animals scurrying. (I live in a quiet, rural area.)
• I ensure the TV is off, and I listen to calm meditation music while I make and eat breakfast.
• I walk around the backyard slowly with my dog and soak in all of the blessings I have in my life.

This whole process usually takes two to three hours. By midmorning, I tell myself it’s time to get ready for the day, shower, and decide on something productive. That could range from accomplishing an errand outside the house to reading a chapter of a book, and everything in between.

I have learned to let go of judging myself and comparing myself to others. I reflect on when I used to get up early for work, shower, pack lunches for my daughter, and get us both out of the house. It’s hard to believe I could do that every day.

My body has been through 52 years of working hard internally to function and stay alive. During those years, my mind has fought to cope with living up to social norms and the expectations of peers despite the extra time and effort it requires, in addition to maintaining my CF on top of it all. So, these days, whatever I can do on a given day is good enough for that day.

I used to spend hours of my day doing nebulizer treatments and chest physiotherapy. Now, post-transplant, I have those hours back, and I use that time to feed my body and mind with kindness, rest, grace, and gratitude. Some days, I can accomplish many things, while others, my body and mind tell me to be still. I listen to my body much more now than when I was younger. I live a slower and quieter life now, which is enough for me.

There is a well-known story in CF history about a 4-year-old boy named Ricky Weiss, who in 1965 overheard his mother making phone calls to raise money for cystic fibrosis. Being young, instead of “cystic fibrosis,” he thought his mother had said “sixty-five roses.”

This almost 53-year-old body is mine, and it deserves only nurturing now. It’s a way of life that is important for everyone.

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.