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

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by Christie |

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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.

Comments

Anne Strickland avatar

Anne Strickland

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!!!!

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Christie avatar

Christie

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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mikeO avatar

mikeO

tsk! I do have this kind of disease now after knowing the result of my physical examination am kind of bit frustration am not ready on this so called transplant bec. I don't have that $$ I know this cost too much am now jobless after the pandemic.

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Iman Al avatar

Iman Al

Hi!
I’m so happy for your mom. God bless her. I’ll share my story with you, my great grand mother died of idiopathic lung fibrosis at the age of 26. At that time, they didn’t know how and of what she died. Later, my grand mother at the age of 71died few years ago of the same disease idiopathic lung fibrosis. Now my aunt who is 56 is dying of the same lung fibrosis..my mother brought her in our house and we are taking care of her. We live in a third world country where no lung transplant exists and for her to travel and seek for help is almost impossible due to the financial cost of this procedure. I am in deep pain seeing my aunt in front of me depending on the oxygen and even can’t walk or even to go to the bathroom ( she has diapers all the time). I wish I can help her but I can’t do anything for her. My family and I are just watching her die step by step and the only thing we can do is change her clothing, give her showers, clean her and look for oxygen bottles in a weekly basis (because of COVID there is great shortage of oxygen and sometimes we drive to other cities and beg people to supply us with oxygen ). Please, if you know any non-profit organization or non -profit hospital who are willing to help non-American people and people with my aunt’s situation .. please reply to my email. I’m sorry for this long message but I was doing research to find a possible cure for the lung fibrosis and I found your post and I was so happy for your mom and husband(the second post). Thank you

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Christie avatar

Christie

Hi Iman,
Thank you for reaching out and sharing your story. I am so sorry that your family has suffered multiple times with this disease, and that you are currently unable to access care for your aunt. With the help of my colleague Charlene, we are reaching out to organizations that might be able to work internationally to provide you with oxygen. No promises, but we are trying to find you some help. I will write to you directly via email when I hear back from these folks. Until then, take care.
Christie

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iman al avatar

iman al

Thank you so much, Christie. You have really made our day happy. Just knowing someone listened and trying to help is a huge thing for us (no matter the consequences).
God bless you and your whole family. Thank you so much again.

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Michelle avatar

Michelle

Hello, I just found out my mother has pulmonary fibrosis and I’m taking the news badly, but yet trying to be strong for her. Can you please tell me something about getting on the lung transplant list and the odds of getting it? My mom is 69 so I don’t know if they would even consider her for a lung transplant. I am glad to hear of some success stories and specifically of your moms recovery. And you are right, SHE IS CURED, regardless of the technical terms.....God bless

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Christie avatar

Christie

Hi Michelle,
I am so sorry to hear that your mother has been diagnosed with PF. It is big news, and it's understandable that you might be having a hard time with it. As someone who has been there, I'm sending you a big virtual hug. As far as "odds" for getting a lung transplant, there are so many factors that doctors consider, and every case is different. The best way to get those questions answered would be to find a good transplant team to care for your mom. If she hasn't started that process yet, she can ask her pulmonologist or primary care doctor for a referral... The sooner the better, so you can put your mind at ease and trust that she will have good care if/when she needs it. As a layperson who been through this, here is what I can say without knowing anything about your mom: age doesn't have much to do with it as long as she is otherwise healthy. When doctors say "age" they mean rough physiological age, not the time you've been alive. My mom was 69 when she had her transplant, but she was very active and healthy prior to her diagnosis. Many older people are great candidates for this procedure, and I know many who have had long-term success. Don't let numbers freak you out--such as life-expectancy after transplant. Lung transplant is a relatively new procedure in the grand scheme of things, and it is improving all the time. That also means that there is not a huge backlog of data to say that people can live 20, 30, 40+ years with transplanted lungs. Those people are out there, and the data doesn't exist because they are STILL ALIVE! :) There are risks, and side effects, and other things for your mom (and family) to consider as she makes this choice, but know that there is potential for a long and healthy life, too. I'm sending you all courage and strength and love. We're all here (columns and forums) any time your family needs support.
Christie

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Chris Montgomery avatar

Chris Montgomery

Hello, I also as diagnosed with IPF as of 5 years ago and given 3-5 years to live. It’s going on 5 years now and the persistent coughing an shortness of breath seems to be the worst of it and iam not on oxygen yet. I’am currently beginning the evaluation procedure and quiet honestly iam scared and not convinced of what to do. Your moms story allows me to see the positive side and knowing that all results are not the same gives me hope. Iam a very active 72 year old male, never smoked and quit all drinking 5 years ago. I look forward to a new life without the symptoms of IPF but not sure about the rejection drugs and the recovery process. I have a 1 year old grand daughter that was born with Cystic Fibrosis and I want very much to be around to see her grow up . Thank you for your forum, God bless and may we all find the health and happiness we seek. Chris

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Christie avatar

Christie

Hi Chris, sorry for the delayed response, your comment got lost in my email somehow. Thank you for sharing your story. This disease is scary and unpredictable, but there are many success stories out there. I am lucky that my mom's is one of them, and that I am able to share it here for readers like you. Of course, there are risks in going for a lung transplant, and truth be told my mom was terrified to even think about it until she had to. But not one person in my family would choose not to take the journey with my mom if we could do it again. Even with occasional suffering and setbacks, it has been worth it to have more healthy years with her.

I imagine you will have a very special relationship with your granddaughter as she grows up with CF. We are lucky to live in a world with treatments for that disease as well as this one, and my hopes are that both of you have healthy lungs and many years to get to know each other and enjoy each others company :)

Christie

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Yashna samyuktha avatar

Yashna samyuktha

Hi I just want to know if pulmonary fibrosis is fatal all the time or it's just an average sensex .Is there anyone who outlived with medication

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Christie avatar

Christie

Hi Yashna, it is a progressive disease affecting on of our vital organs, so ultimately, it is fatal, yes. But The disease is wildly variable. Some people have lived with it for many years, and the progression is slowed by anti-fibrotic medications. I'm sure there are people out there who have lived quite long with PF and died of something unrelated, though I don't personally know any. The only "cure" for PF is a lung transplant, which removes the diseased organ. The likelihood of it recurring in transplanted lungs is absurdly low, so it is effectively a cure. Of course, it comes with caveats and other challenges, but it does remove PF.

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