Facing a Serious Health Condition—Stories of Strength and Life with a Rare Lung Disease
(NAPSI)—Being diagnosed with a serious disease can be devastating. That’s how Nick, 72, felt when he discovered he has a rare and severe lung condition called idiopathic pulmonary fibrosis, or IPF. Ginger, 68, said learning she has IPF was the scariest time of her life.
Chronic diseases such as IPF—which causes permanent scarring to the lungs, making breathing difficult—have an emotional impact in addition to the physical limitations they may cause. Caregivers and other loved ones share the burden too. It isn’t easy to adjust to the “new normal” of life with a serious health condition, whether it affects you or someone you are caring for, but learning how to manage the condition can empower you or your loved one to face the challenge.
To encourage others with serious health conditions to take action in managing their diseases, Nick, Ginger and their families and friends share their stories of strength and support in facing IPF on www.aarp.org/ipf. Here are some of the lessons they’ve learned in their journeys:
1. Be proactive and learn about your options. If you are diagnosed with a chronic disease or other medical condition, it’s important to become educated about what options are available to manage it. Initiating conversations with your doctor and asking questions soon after diagnosis are important first steps. This is especially true if your disease is progressive, or worsens over time.
IPF is one such progressive disease, as lung function lost due to scarring cannot be reversed. When Nick learned this, he discussed ways to manage the condition with his doctor, including FDA-approved medicines and a pulmonary rehabilitation program, which can help ease symptoms of breathlessness.
“Through pulmonary rehab, I’ve learned how to recognize the signs of my oxygen level dropping and how to breathe efficiently, and those two things have made a big difference,” Nick says.
In addition to participating in pulmonary rehab, Ginger learned about the importance of using oxygen therapy during day-to-day activities to help manage her IPF.
If you are living with a serious health condition, it’s important to manage your symptoms and also discuss recommended lifestyle changes with your doctor that may help you be healthier overall, such as adjusting your diet and quitting smoking.
2. Seek out and lean on your support system. Support groups provide an opportunity to connect with others with similar experiences, and the mental and emotional support they offer helps people develop a more resilient mindset. You can find online or in-person IPF support groups on the Pulmonary Fibrosis Foundation’s website at www.pulmonaryfibrosis.org/life-with-pf/support-groups.
Nick and Ginger have also found comfort in leaning on their loved ones during difficult times. For Ginger, it’s her son Kenny, daughter-in-law Megan and many dear friends. For Nick, it’s his wife Barbara, his children and his community, where he taught and coached at the local high school for 39 years.
“The love of my wife and family reminds me that, despite the challenges, life is good, and there are too many moments of joy to be thankful for. They remind me to do everything I can do to stay on the right track with my health and keep moving forward,” says Nick.
3. Focus on the present and make the most of everyday moments. Feeling down in the face of a chronic disease is understandable, but living in the present instead of fearing the future or dwelling on the past may help you appreciate the everyday moments that make you happy.
Nick says he focuses on what he can do instead of what he can’t. He may not be able to go for runs anymore but he can still enjoy walks around a nearby lake and being outside.
Ginger finds strength through time and laughter with family and friends. “I want to continue being a good mom and a good grandma. I love to laugh and I want my loved ones to know I’m happy even though I have IPF. I fight for my family. They’re my world,” she says.
For additional information about IPF and to watch videos of Nick, Ginger and their loved ones, visit www.aarp.org/ipf.
Ginger and Nick are living with idiopathic pulmonary fibrosis (IPF).
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