We May Share an IPF Diagnosis, but We’re All on Different Paths
What works for one IPF patient may not work for another
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it felt like my entire world had shrunk. My wife and caregiver, Susan, and I were suddenly alone on an island.
I’m confident many feel this way after receiving a diagnosis. However, a rare, incurable disease can also be responsible for drawing people together.
Converging
People are diagnosed with IPF all over the world. The disease doesn’t discriminate, as it can affect people of any ethnicity, profession, or walk of life. Our lives converge around the diagnosis.
Being idiopathic means the cause of our disease is unknown. IPF is often a diagnosis of exclusion, meaning doctors arrive at it by ruling out other conditions. IPF becomes our commonality as members of a rare and exclusive club no one wants to join.
Diverging
Beyond our shared diagnosis, our paths begin to diverge, as we may each experience various symptoms and have different treatment plans. Even a standard of care can vary based on individual needs.
Consider at what point in your life you received a diagnosis. I was 59 and in good health except for IPF. While the symptoms I presented with did affect my quality of life, they were manageable. Others may be younger or older, and have more or less severe symptoms.
My care team discussed medications and their potential side effects with me. This was especially important for Esbriet (pirfenidone) and Ofev (nintedanib), the two anti-fibrotic medication options I was presented. I ultimately selected Esbriet and took it from early 2017 until July 9, 2021, the day before my bilateral lung transplant. While many people cannot tolerate Esbriet, it worked for me. The same is true for many other medications.
IPF patients may also require different medication dosages. I’ve been taking prednisone for more than five years. Today, my daily maintenance dose is 5 mg, but I’ve taken as much as 60 mg to address specific issues.
Pre-transplant, providers conduct a variety of tests to identify issues that may preclude a person from undergoing transplant, or that must be addressed prior to approval for transplant. IPF patients may experience a number of comorbidities (when two or more diseases are present at the same time) that can affect this process.
For example, gastroesophageal reflux disease, or GERD, is often associated with IPF. A doctor can confirm it during an endoscopy as part of a pre-transplant work-up. Patients with GERD may require a Nissen fundoplication surgery to reduce the risk of acid reflux.
Other health issues that can affect a transplant evaluation include cancer and dental disease. Some patients have no comorbidities while others have many.
Avoid judgment
Since my IPF diagnosis, I’ve followed a variety of forums and social media groups. Unlike the forums here at Pulmonary Fibrosis News, many are not moderated. I have witnessed participants criticize the care another patient is receiving, or point out that their care team believes a certain drug combination would be harmful. These exchanges result in the recommendation that patient A get a new doctor because patient B’s medical team had a completely different care plan.
These comments are often well intended. But while those of us with IPF may have some similar experiences, we may also have some different ones. That does not make either care plan wrong.
It is never my intent to provide medical advice in my columns. None of us should seek that kind of advice from forums or social media groups. I understand the elements of my care plan and my underlying conditions, but I likely wouldn’t understand yours. If you have a question about your care plan based on something you read online, take that question back to your medical team.
You can ensure all your concerns are addressed by playing an active role in your healthcare. This also allows you to feel more confident in your care plan, leaving you more time to make every breath count.
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.
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