My tips for patients struggling in their pursuit of an IPF diagnosis
We may be anomalies, but young adults can get IPF, too, a columnist writes
When I first began experiencing symptoms of idiopathic pulmonary fibrosis (IPF), my condition worsened quickly and kept me from doing many activities I enjoyed. And yet, it took 13 months for me to receive a diagnosis. This time frame felt like an eternity and left me and my family emotionally exhausted.
IPF is a rare, life-threatening lung disease that causes scarring, or fibrosis, of the lungs. Although my shortness of breath and dry cough were textbook symptoms of IPF, a lung disease wasn’t initially considered because I was only in my 20s and didn’t have a family history of it. It wasn’t until doctors discovered I was hypoxic that I realized something was very wrong. Still, many other conditions were considered before IPF because I was presumed to be too young to have a lung disease.
Since my diagnosis in 2016, I’ve been privileged to write this column, co-moderate the PF News Forums, and interact with many other patients at various stages in their diagnostic journeys. In that time, I’ve discovered that while everyone’s experience with IPF is different, there tends to be one common thread: difficulty obtaining a diagnosis.
Several forum members have expressed frustration with finding answers to their symptoms. It seems medical teams often default to other ailments, such as anxiety, when a young adult is experiencing respiratory issues. I know physicians are experts and that developing IPF at a young age is rare, but it happens. I am that anomaly.
When talking with these frustrated patients, I often share two things. First, I explain that many doctors are taught the adage, “When you hear hoofbeats, think horses, not zebras.” This means that they should consider the more common and likely explanation (horses) before investigating something rarer (zebras).
Second, I explain that showing doctors documented patterns or “proof” of symptoms can be helpful in finding answers. As a result, I recommend the following for patients pursuing a diagnosis.
Journaling
Purchase a small notebook and dedicate it to journaling about your general health. Take a few minutes to note how you’re feeling at different times of the day, particularly in the morning, after exercise, or before bed. Use descriptive words to capture how you’re feeling so that others can better understand what you’re going through.
Once you’ve done this for a period of time, look back on your notes or have a trusted family member or friend read through them to try and identify patterns. This can help you convey your experience to doctors.
Documenting symptoms or flares
Similar to journaling, this can help patients identify patterns; the difference is that you’re focusing on specific incidents or symptoms. For example, I would document exactly when a symptom started, how long it lasted, how it felt, if I was doing something that might have triggered the symptom, and what brought me relief, if anything.
Documenting is more about detailing specific, acute issues, while journaling is about noting how you feel day to day.
Tracking vital signs
When I had COVID-19, several emergency room doctors and nurses used my Apple Watch, along with a pulse oximeter, to monitor my oxygen level. They explained that both devices are pretty accurate, so I now often use my watch to check my heart rate and oxygen level when I’m feeling short of breath.
I encourage others to track and take note of their vital signs, as these measurements can be helpful for doctors when seeking a diagnosis.
If you have IPF, what helped you and your doctors reach a diagnosis? I’d love to hear from you in the comments.
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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Comments
Kathryn Maguire
I was diagnosed by my GP after a six minute walk test and had it confirmed by a Pulmonologist within 2 weeks after a CT scan and another 6 minute walk test. I then had PFT's done and blood work.
Margaret guzman
I am totally surprised with my diagnosis of IPF
I was blindsided.
One day I was fine and the next NOT.
It came out of nowhere and I didn’t have any symptoms.
One gay I had a cough and it all went downhill after that
Still can’t
Grasp it after 1 1/2 years.
Charlene Marshall
Hi Margaret,
Thanks for writing but so sorry to hear of your struggles with IPF and how problematic your symptoms are. This disease is a cruel one, that's for sure! Hang in there and know that we're here for you.
Charlene
Carlene A. Chamberlain
I too had the wind knocked out of me with the IPF. For many years I had dry cough, in the last year of 2021/2022 I couldn't walk far, my 02 dropped drastically into the 80's. I was told my asthma had flareups. A doctor referred me to a cardiologist due to the shortness of breath in about 2021, after viewing CT scan, which clearly showed lung issues, the concern was perhaps blocked artery. The visit was for a nuclear treadmill test..In October of 2022, I pleaded with the general practitioner to send me to a pulmonary doctor. That doctor viewed the same CT scan and said to me, "I wish you had asthma, I could fix that, you have pulmonary fibrosis". It did't sink in what disease I really had, nor the death sentence that comes with it. I cannot grasp this either. I was denied a lung transplant and given 5 year death sentence. Reading about others helps me though. I just feel so horrible about others like us. I feel like I walk around in a daze after finally retiring from work last year. This is not what I thought retirement would be for me.
Charlene Marshall
Hi Carlene,
Thanks so much for writing and sharing your experience, though sorry to hear the diagnostic journey was tough and then to receive word that you have PF.... brutal. Not that this is helpful in the moment, I know, but remember the 3-5 year prognosis is outdated, and was given before anti-fibrotic medications (Ofev and Esbriet) were available. Sadly, doctors still share this information with patients. Many of us have been around for 10+ years with this disease and a slow progression. I encourage you to consider joining the PF forums, they are helpful to connect with other patients! Take care and hang in there.
Char.
Anjula Bean
Hello Charlene
I was living the life in Bermuda and my beloved mother passed away in August of 2020 and I came to be with before she passed. Leaving behind my father and brother (not married). After the funeral my father wanted me to move to Toronto and be there for him and my brother. My father is now 97 with osteoarthritis in his knees and God bless him he is not on any medications and others are in perfect health. After much thought i decided to pack up, leaving my 2 children and 3 grandchildren behind in Paradise to come here and take care of my father, his meals etc My husband decided to go the U.S. and take care of his affairs and join me. This whole journey was very stressful not to mention losing my mother. I was living a very healthy life and boom in April of 2022 I started experiencing shortness of breath going up the stair in my house WOW so my journey started at age 65 no reason no other signs just out of the blue after all the tests etc I was diagnosed with ILD/Autoimmune both of no specific kind. My husband and I were planning on travelling but all that came to a halt all of a sudden. Between taking care of Dad and my condition we were both feeling like what the hec happened here. I am a researcher so I would search and read up on everything about this disease and had my good days and bad days not to mention the depression i went through. Then one day I felt like taking a positive turn and dealing with the situation and started joining groups, rehab classes and searching for healthy options etc Now one and half year later I am stable. Not sure where life is going to take any of us but I know I want to live it to the fullest. I have started travelling again and I do my best every day and I thank God my husband is so supportive and helpful.