Five years ago today, the phone rang early in the morning. “We have lungs,” the voice on the other end announced.
The first words I heard that day were months in the making. My mother, Holly, was in intensive care for almost 12 weeks due to an acute exacerbation of idiopathic pulmonary fibrosis (IPF).
Today, she is reaching a major milestone in her recovery from the transplant. She is still here after her five years and improving the transplant statistics by being healthy.
From the beginning of my mother’s illness and through her recovery from a bilateral lung transplant, I learned how to navigate the complex emotions that come with a rare disease journey.
I started writing this column two months after my mother’s transplant. All of my early entries show that I was trying to understand the richness of my mother’s experience as her caregiver. A particular highlight was the column “Ruminations on the inextricable duality of chronic progressive disease.” This column has described many of the contradictory moments we’ve faced while in the thick of things.
These things still hold true five years later, but I have grown as a person and as a writer. I learned the power of the word “and”.
For me, this entire experience was, and still is, a complex study in what it means to be human. As a young person, I was desperately looking for a sign of hope, a happy ending, a life raft of grit in a wide ocean of fear: the courage to care.
I’m lucky that my mother’s story has a happy ending and that I can sympathize with her as a young child. I used the word “but” to deal with it. Something complicated and scary. When I read that column now, I realize how much I have grown. Because I no longer use the word “but” to judge or invalidate the difficult parts or deny my optimism.
No about that, this is the truth
There is no need for a transplant unless there is a severe disease. and If your health is too poor to survive, you won’t be on the list.
There is no movement towards a transplant unless the health condition progressively deteriorates. and There is no progress without fierce optimism.
medicine keeps you alive, and It can cause severe side effects.
Lung transplants save lives; and This is possible only because lives have been lost.
There is gratitude for survival; and There is sadness.
Life after transplant is a gift, and It’s challenging.
What is your mother doing now?
Although my mother is grateful to be healthy five years after her transplant, she has also had to deal with side effects and comorbidities. She should take care of her own health and enjoy spending more time with her loved ones. She has lived more life and enjoyed more of it thanks to her new lungs. And she grieves for her donor.
My mother wants to tell me that her emotional and psychological state is more positive than before she got sick, and that her post-transplant challenges are easier than they were before the transplant.
She has a new perspective on life and feels prepared for the end of her life after facing mortality, but says she no longer lives in anticipation. . The burden of a progressive chronic illness is no longer on her shoulders.
When asked if she had any wisdom to share regarding this major milestone, she replied: Transplanting is more than just replacing defective parts and inserting new ones. — That’s it! Some of the things that come with it are negative, and some are positive. The shift in perspective about life, death, and mortality is positive and it colors everything from my choices, plans, and relationships. ”
We both began to process the experience and see its wholeness. I accept the parts that were difficult and difficult. I am grateful for the good that has come from going through this together. And we don’t take a single day for granted. We approach the world with more kindness, more compassion, more reverence, and an open heart.
5 years alive.How dirty and wonderful.
Holly and Christy Patient laugh together at home after Holly’s lung transplant five years ago. (Photo by Kathleen Schaefer)
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 related to pulmonary fibrosis.
