Busting 4 Common Lung Transplant Myths

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by Christie Patient |

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When I was growing up, I loved the show “MythBusters.” I tuned in regularly to watch Adam Savage and Jamie Hyneman bust famous myths and answer burning questions like, “Will using a cellphone near a gas pump cause an explosion?” 2003 seemed like a simpler time, didn’t it?

In one episode, the team answered a great body horror question: “Can a person’s internal organs be cooked by a tanning booth?” This myth was hastily busted. Since becoming my mom’s caregiver after her lung transplant three years ago, I have spent a lot of time busting internal organ myths. I’m not a doctor, but after being immersed in the lung transplant community, I’ve learned a lot.

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I’m Grateful for Doctors Who Understand IPF

I walked the transplant path beside my mom, Holly. I was with her during her months-long stay in the ICU as idiopathic pulmonary fibrosis (IPF) threatened her life. I was there when she emerged from a 10-hour bilateral lung transplant surgery and her vital signs were normal for the first time in years. 

The transplant team at the University of California, San Francisco (UCSF) taught me everything I needed to know to be a lung transplant caregiver, and they answered all of the nerdy medical questions I had.

In addition to lived experience, I’ve spent an absurd amount of time researching, reading, writing, and talking about lung transplants. I’ve made many friends of all ages who have also walked this path.

As a moderator of the Pulmonary Fibrosis News Forums, I see some of the same myths and misinformation about lung transplants come up again and again. I’m not sure of the origin of these common misunderstandings, but no matter the source, we must be critical of information when we are making decisions about our health. Misinformation is abundant on the internet, and it spreads faster than the hot tanning oil of “MythBusters.” 

I know transplant isn’t for everyone, but I want those making the choice to do it to have accurate information. Since it’s National Donate Life Month, I’m here to bust a few of the common myths I regularly hear about lung transplants.

Myth 1: ‘You aren’t eligible for a transplant after age 65.’ 

False, at least in the United States. In the U.S., the “age requirement” is a relative contradiction to guide doctors in their assessment of a patient’s health. They determine eligibility based on physiological age — the overall health of your body — not the number of years you’ve lived. Note: This may vary in other countries.

Myth 2: ‘Survival statistics are poor.’ 

False. Almost all patients survive the first year after transplant without complications. According to a study published in 2020 in the journal Current Opinion in Organ Transplantation, data from the International Society for Heart and Lung Transplantation Registry show that adult patients who received a lung transplant since 2010 have survival rates of 85% at one year post-transplant and 59% at five years. 

Additionally, medical science and technology improve every year, so we can expect that transplants performed this year will be more successful long-term than ever before. Only time will tell, of course, because the data have yet to be shown. But as of last year, the average three-year survival rate in the U.S. was 74.3%, according to UCSF Health, citing the Scientific Registry of Transplant Recipients. And some transplant centers boast even better outcomes. UCSF, for example, has a three-year survival rate of 89.9%. 

Myth 3: ‘Quality of life after transplant is bad.’  

Chronic immunosuppression can be challenging, and surveillance is tedious. But most transplant recipients agree that the tradeoff is worth it for more years of good health. Most of the connections with people who’ve received transplants that I’ve made in the years since my mom’s are quite happy to still be here and are living full lives with few limitations. 

Myth 4: ‘You will get IPF again.’

This is an understandable fear, but I am happy to report that it is indeed a myth. According to my readings and several doctors at UCSF who took the time to discuss this issue with me, IPF does not come back after transplant. What makes this tricky is that there are other complications that can cause scarring, or fibrosis, in the lungs. Chronic rejection, also known as chronic lung allograft dysfunction (CLAD), can cause fibrosis in the airways and other parts of the lung. The journal Medical Sciences reports that CLAD is a significant barrier to long-term survival and is the cause of about 30% of annual deaths after the first year.

You may see the word “fibrosis” and assume it is the same as the disease we call idiopathic pulmonary fibrosis. But the pathophysiology of fibrosis in CLAD is different from that of IPF. Bronchitis obliterans syndrome and restrictive allograft syndrome are the two types of fibrosis associated with CLAD.

According to a study published last year in the journal Transplantation Reviews, some interventions can slow progression or stabilize lung function, whereas IPF is progressive and fatal, even when treated with anti-fibrotics. Additionally, a lot of research is ongoing about how to improve outcomes after CLAD.

Yes, CLAD is a contributor to mortality in transplant patients, but it’s different from IPF. And more importantly, it’s not a guaranteed outcome. It’s a risk that one must be willing to accept when choosing to get a transplant.

When I talk to my mom about her decision to get a lung transplant, she has no regrets. Despite challenges and risks like CLAD, she says, “I’ve already had three more years than I would have had, and I’m still healthy!” 


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.

Comments

Luciano Molina avatar

Luciano Molina

Good information; thank you.

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Christie Patient avatar

Christie Patient

You're most welcome. :)

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Sherry Byars avatar

Sherry Byars

Christie thank you for your article. I am close to two years post lung transplant and grateful everyday for the gift of life and breath that was given to me. There have been complications and the road has not always been smooth but compared to the way I struggled pre transplant I know it was worthwhile.

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Christie Patient avatar

Christie Patient

Thank you for sharing Sherry. I think a "perfect" recovery is pretty much impossible, but even with bumps in the road it's been worth it for my mom, and others that I know. Sounds like you feel the same. :)

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Mary Geissler avatar

Mary Geissler

Thanks for such a great article! I wish I knew your mom's age. Not that it matters, but I'm 73 and going in for a solid week of serious tests at UW-Madison, heart catherization both sides, lung perfusion, manonmetry and pH impedance - you name it - the works! I have no other health issues other an IPF, so have been very healthy and strong up until about a year ago in May. I did not waste any time creating a path to transplant. I exercise, eat right and have a positive attitude - so I am hoping for a single lung. I believe I will be a good candidate, assuming no tests come back negative! Thanks again and so glad you are a wonderful support and daughter for her!

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Christie Patient avatar

Christie Patient

Hi Mary, thanks for reading and sharing your story. I wish you the best of luck with your upcoming tests! Sounds like you should be on your way to the list :) My mom got her bilateral lung transplant several months after she turned 69. If you need support as you go through this, or just to keep us posted on your story, check out our forums (linked at the top of the page)
Christie

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Brenna Durbin avatar

Brenna Durbin

My father just had a single lung transplant 2.5 weeks ago, and I 100% agree with everything written in this article. Don't get me wrong, we've had our bumps in the road post transplant - but I am so grateful to be celebrating a new life for my father.

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Christie Patient avatar

Christie Patient

Congratulations Brenna! It's the most amazing feeling to make it through and celebrate a second chance at life. I hope your father continues to have a smooth recovery and gets to go enjoy his new lungs soon. Thank you for sharing :)
Christie

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jerry reynolds avatar

jerry reynolds

Thanks for this informative article on IPF. Having been diagnosed last year with IPF and currently in treatment, I:m praying for a few extra years since my age is 80 and too old for a transplant.

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