Call It What You Will, Transplant Helped Mom Beat an Incurable Disease

Call It What You Will, Transplant Helped Mom Beat an Incurable Disease
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The correct way to talk about lung transplantation in relation to pulmonary fibrosis is to call it a “treatment.” I learned this early in my caregiving journey through a combination of education from my mom’s medical team and a few not-so-gentle comments from strangers when, in my ignorance, I used the word “cure” instead.

Though a successful transplant eliminates pulmonary fibrosis, the word “cure” is technically incorrect. You can’t be cured of idiopathic pulmonary fibrosis in the same way you can be cured of a rash or an infection. IPF is incurable. There is no treatment (yet) that can reverse the damage caused by the disease and restore the lungs to health. 

A lung transplant will give the patient a life without pulmonary fibrosis, but the price of admission is a willingness to risk a multitude of potential side effects and a lifetime of immunosuppressant medications. It’s possible to live a “normal” and fulfilling life — and even a very active one — after a lung transplant, but that doesn’t come without constant monitoring and maintenance. 

Due to the burden a patient accepts when opting for a transplant, it can be viewed as trading one condition for another. This is another argument for why lung transplantation is not a cure.

Scientifically speaking, I get it. I understand that semantics matter. But I also find the distinction between cure and treatment a bit tiresome. As my friend Kathleen Sheffer, a heart and-double-lung transplant recipient, so succinctly put it, #TransplantIsNotACure … Honestly, who does that serve?”

When I first learned that my mom would try to get on the list for a transplant, she delivered the news by telling me that her lung disease had a cure. She explained that the “cure” was extreme, it was risky, and a lot of luck would need to be involved for it to happen. But it would put an end to her disease. Full stop.

And so, it did. Her lung transplant did not treat her hypoxia like supplemental oxygen had. It did not slow her fibrosis like Ofev (nintedanib) treatment did. It did not suppress her cough, ease her exhaustion, or slow the clubbing of her fingers. It cured all of it.

Some of the symptoms of chronic pulmonary disease took a while to recover from, but she has mostly recovered. This is in stark contrast to the pre-transplant treatments that made little difference in the progression of her symptoms.

I remember the first time I realized that my mom was “cured” of IPF. It was within the first few weeks after her transplant, when she was in the cardiac unit recovering. A friend texted me to ask why I was in San Francisco. My go-to response, “My mom’s sick,” was halfway typed when I realized it was no longer true. My mom was not sick.

I glanced at the vital signs monitor. She had 99% oxygen saturation and a normal heart rate, rhythm, blood pressure, and respiratory rate. Her color was back. She wasn’t on a ventilator and didn’t have nasogastric tubing anymore. She could walk, talk, and laugh. She could breathe. She had lungs in her body that did not have a single trace of pulmonary fibrosis. 

Call it a treatment if you’d like. I understand why. But a lung transplant cured my mom of IPF. Removing the diseased organs removed the disease. Healthy lungs and high oxygen saturations have treated the symptoms and reversed much of the damage that chronic hypoxia inflicted.

Sure, she deals with some medication side effects. Her immune system is weakened, and the transplant meds make her life a bit more complicated. And as much as we’d hoped that new lungs would be a magic fountain of youth, the reality is that recovering from major surgery in your late 60s, plus years of chronic illness take time.

Maybe there is no “cure” for pulmonary fibrosis, but when I look at my mom, I don’t see someone who has treated this horrible disease and all of its nasty symptoms away. She is not in remission. Semantics be damned, I see someone who is cured of idiopathic pulmonary fibrosis. 

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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.

Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.
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Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.

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2 comments

  1. I 100% agree with you Christie. My 67 year old husband had a lung transplant and is doing so well 4.5 months later. His life has really been restored to him. He is walking 3+ miles a day, is a full time graduate student and photographer. He takes his pills in the morning and night and that’s about it. I call it a cure even though he does have to worry about infection/rejection but we are super careful!!!!

    • Hi Anne,
      Sorry it has taken me months to respond. I’m not sure how your comment slipped through the cracks, but I am seeing it now! Thank you for your response.. I am so glad to hear that your husband is doing so well after his transplant. The walks are a huge deal, and 3+ miles less than 6 months later is amazing! Wow! Not to mention graduate school? Very cool. And I, too, am a photographer. 🙂 I am happy to share that with him, and would love to see some of his work if you feel like sending me a few shots. You can find my contact info on my column’s main page.
      Wishing you both the best, and many healthy, happy years!
      Christie

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