A Pulmonary Fibrosis Caregiver’s Journey

November’s National Caregivers Month presents an opportunity for caregivers – or as I like to say, “care partners” – to share our stories and empower those who advocate for the well-being of their loved ones. Today, I am sharing my story as a pulmonary fibrosis (PF) caregiver and Pulmonary Fibrosis Foundation (PFF) Ambassador to bring awareness of the early warning signs of PF and above all, instill faith in caregivers and families navigating difficult diagnoses.

My Story

My journey began in 2010 when my husband Jim was diagnosed with idiopathic pulmonary fibrosis (IPF), one of the common types of PF, a progressive and debilitating lung disease with no cure. While vacationing in Colorado in 2009, Jim had a difficult time keeping up with our group as we hiked mountains during a wildflower festival. I tried to stay back with him, but he refused, so we continued to the summit. We had our snacks and adult beverages and met up with him on our way back down. And so went the vacation, with Jim not able to keep pace. We realized that when we got back to Pennsylvania, we would have to go to the doctor.

When we returned home, we reluctantly made an appointment with Jim’s primary care physician, who initially thought he may have a heart issue or a pulmonary problem. They ruled out heart problems early on and Jim was diagnosed with IPF. Over the next couple of years, we learned to live with the disease. We continued with regular doctors’ visits and necessary testing and ultimately were put on the lung transplant list until a donor was available. In 2013, the call we had been anxiously waiting for arrived. They said they had a lung for Jim, and we needed to get to the hospital as soon as we could safely get there. Hours later, the surgery was a success!

Living with IPF

Through our journey with Jim’s IPF diagnosis, we learned that a majority of people have never heard of the disease or its symptoms, which most commonly include a dry, persistent cough, fatigue and shortness of breath. Because the disease is largely unknown, patients can go months, or even years, without receiving the correct diagnosis. And that’s why I tell our story – to help educate families on how to identify early warning signs in their loved ones because early, accurate diagnosis is imperative for maximizing treatment. If you or a loved one has two or more of the above lingering symptoms, it should be taken seriously and you should speak with your physician.

While anyone can develop pulmonary fibrosis, it is more likely to occur in those 60 years and older with a history of smoking or a family history of interstitial lung disease, putting millions of Americans at risk for the disease. To help you start that conversation with your doctor, a downloadable Pulmonary Fibrosis Risk List is available at AboutPF.org.

My Advice for Caregivers

While some days are more difficult than others, remember that you are not alone. I found the following tips to be immensely helpful in improving our outlook as we navigated Jim’s diagnosis:

• Stay organized: As we worked through the doctor visits and tests, having strong organizational skills was helpful. I would always go along and take notes so that we could discuss the day’s activities on our way home and have the same understanding of what took place that day. That notebook is still with us now when we make visits, 10 years later.

• Accept help: As a caring and loving wife, I found it difficult after Jim’s lung transplant to let others come and help. When people stopped by without calling, I had to be the gatekeeper, hand sanitizer in one hand and the other ready for a hug. It’s important to allow others to step in and help when they offer, so that you, as the caregiver, can get a break.

• Take care of yourself: As a caregiver, one of the most important lessons I learned in dealing with PF was that I needed to take care of myself so I would be able to care for my husband. Being an active person, it was not always easy for me to not be busy, but I managed to do it while keeping myself healthy, active and well-rested for whatever the future held.

• Reach out to support groups and ask questions: Sharing the journey with others is helpful, both in providing information and helping me to heal. Others may have more or less experience, but everyone can help each other. Our support group made us feel better at times, a reminder we were not alone. Find a PF patient or caregiver support group in your area, here.

• Have faith and stay positive: Faith has always been an important part of my life, and this was a test that proved the strength of that faith. In fact, it made it even stronger. Faith also helped me keep a positive attitude to see us through the difficult days as we continued to learn as much as we could about this disease.

• Take advantage of the PFF’s resources: The valuable support services and educational materials offered by the PFF were vital as our family tried to make sense of the diagnosis and figure out next steps for care.

Today, Jim’s and my relationship is no different from 10 years ago, prior to his diagnosis. I am still always concerned and aware of changes or feelings that Jim may exhibit, and I try to find out if there is a problem. On this journey, we are thankful every day for the love we share and the caring we exhibit, which have grown stronger.

In recognition of National Caregivers Month, I encourage caregivers to utilize the helpful resources, ongoing research and support that the PFF offers, which were essential in improving our quality of life as we dealt with this difficult diagnosis. The PFF’s numerous resources include nationwide support groups, a Patient Communication Center, PFF Care Center Network, information guides and checklists, ongoing webinars and more. You can also view inspiring videos from patients and caregivers on the PFF’s YouTube channel, including “Words of Wisdom” for caregivers!

To learn more about pulmonary fibrosis, visit AboutPF.org.