My Wife Shares Her PF Story

When I volunteered to coordinate the Pulmonary Fibrosis News initiative “30 Days of PF” alongside fellow columnist Charlene Marshall, I didn’t expect a tremendously emotional experience. I asked my wife, Dana, to write her pulmonary fibrosis (PF) story for this program. She had difficulty covering seven years in 400 words, so she wrote four pieces and told me to choose one.

• “A ‘Care Partner’ Is Not Just a ‘Care Giver'”
• “Being an IPF Care Partner“
• “My Journey as a Lung Transplant Care Partner”
• “What It Takes to Prepare for Transplant as a Caregiver“

Discussing her writing prompted a deep dialogue about the last seven years of my PF journey. We experienced a profound, loving, tearful, happy, sad, and emotional encounter that brought us closer.

Recommended Reading

September 1, 2021 News by Hawken Miller

Pulmonary Fibrosis Awareness Month Honors Those Touched by PF

The IPF journey of Dana’s father

When I was diagnosed, I had not heard of PF, but Dana had.

Dana wrote, “My father had died from PF in 1994. The minute I heard Kevin’s diagnosis, memories of my dad came flooding back. And they were not particularly fond memories of my dad’s progression with the disease.”

As I learned about PF, I didn’t discuss it with Dana so that I wouldn’t add to her fear. She didn’t explain the seriousness to me because she was protecting me from being scared to death. She summed it up the best: “We both smoldered in our own thoughts and emotions.” At that time, I wouldn’t have been receptive to discussions because I was in denial.

Our recent talk invited lots of sadness and opened old emotional wounds. Dana explained more about her dad’s problems with chest tubes while in the hospital. When I was hospitalized for 31 days, the main issue was my chest tubes. She had to relive one of her worst nightmares.

I now understand Dana’s emotions and anxiety over the years.

Diagnosis and lung transplant evaluation

As my IPF progressed, my trepidation started to show. I required more oxygen and couldn’t do many of my regular activities.

Referring to me, Dana said, “His emotions were raw, and he was easily irritable. Now was the time for me to do my best to let terse or harsh comments roll off my back.”

I could become annoyed at the drop of a hat, but I tried to mitigate it as much as possible. Thankfully, Dana understood. We seldom discussed my health situation because we knew it would escalate the tension. This was the best solution for us.

I felt her love when she shared her stories with me.

Lung transplant

This column sparked a conversation about my lung transplant consultation with the surgeon. Dana and I viewed it differently.

The consultation added to Dana’s anxiety because she feared the outcome of transplant. We had discussed:

• The possibility that I’d need a heart-lung bypass machine during surgery.
• The possibility that I’d need an extracorporeal membrane oxygenation machine after surgery.
• The possibility that I’d have a stroke.

But the consultation didn’t bother me. I knew the general risks, and I couldn’t control the potential outcomes:

• I’d recover, live longer, and enjoy a better quality of life.
• I’d experience complications caused by other health issues and maintain my current poor quality of life.
• I’d face the unmentionable possibility of death.

If I had done a deeper analysis of these outcomes at the time, I would’ve been in a gridlock, unable to decide.

In his book “Being Mortal,” Atul Gawande explains how different individuals define their quality-of-life requirements. This played a role in my decision-making process.

The discussions with my wife led to extreme melancholy. I hadn’t understood how Dana felt. Despite the feelings that arose, it felt right to have these talks.

Living in an apartment after transplant

Dana shared her perspective from when I received the call for transplant through our stay in an apartment for two months post-transplant.

Dana told me about her concerns regarding living in a sixth-floor apartment that was the farthest one from the stairs. She was worried about the “what ifs,” such as a fire, whereas I was focused on my recovery.

Additionally, being a care partner changed Dana’s regular daily routine. She used to sleep late, but now she had to get up at the crack of dawn to take me to appointments. She also became my short-order breakfast cook. She showed unconditional love.

Conclusion

Writing my columns is therapeutic, but I received the greater reward of closure after reading my wife’s stories. I am no longer on the IPF roller coaster, and have closed that chapter of my life.

I would love to read your story as part of “30 Days of PF.” See Charlene Marshall’s column “Let’s Raise Awareness by Sharing Our Stories this September” for more information, or send your story to [email protected].

***

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.