Wisdom from Pulmonary Fibrosis Patients for the Newly Diagnosed

Last week, I wrote about the top three things I wish I’d known when first diagnosed with pulmonary fibrosis. I shared what a difference it would have made to ignore information online about life expectancy, start exercising as soon as possible, and practice breathing exercises.

Today, I’m sharing words of wisdom from PF friends I learn so much from online. I belong to several wonderful Facebook groups that provide help, information, and support to me and thousands of others. I asked friends from the PF Warriors Group and the Ultimate Pulmonary Wellness Group to share what they wished they’d known when first diagnosed. Here’s the wisdom they shared with me, summarized:

Get a second opinion

Many patients shared that initial medical advice was either wrong, incomplete, or wasn’t from a specialist. See a pulmonologist as soon as you can, and don’t be afraid to get a second opinion. My first pulmonologist told me I had months to a year to live. I got a second opinion, was prescribed different medication, and just had my four-year anniversary since diagnosis.

Be evaluated at a center of excellence

The Pulmonary Fibrosis Foundation has assembled a list of medical centers that have specific expertise in the treatment of pulmonary fibrosis. You can visit their website to find the care centers near you. It’s worth the effort to get the best treatment possible.

Think twice about having an open-lung or VATS biopsy

Many patients cautioned against getting an open-lung biopsy because of frequent complications that can accelerate the disease. Your pulmonologist can get a tissue sample via a bronchoscopy with biopsy. This is an outpatient procedure you can be sedated for, with low risk of complications. Getting a sample of lung tissue aids in diagnosis and treatment.

Get support for yourself and your loved ones

Being diagnosed with pulmonary fibrosis is so hard to handle. There are so many of us going through this disease. We can support and learn so much from one another. There are many ways to get support through in-person or online groups. Check out my recent column for more information.

Discuss this topic with other PF patients here

Advocate for yourself

As patients, we need to ask our doctors about treatment options, resources, and support. You will most likely need to fight with your insurance company, oxygen provider, and others to get what you need. Trust your gut. If something doesn’t feel right, question it!

Find out all treatments and medications available

Sometimes physicians don’t share all the options available to us. It’s important for us to know what our options are. The Pulmonary Fibrosis Foundation provides some great information on this topic.

Information about the end stages of PF

It is often hard to get honest, clear information from our physicians about how this disease progresses. My most popular column, “Wrestling with the End Stage of PF,” provides answers that may help with this important topic.

Develop positive lifestyle habits to give yourself the best shot

Many patients mentioned healthy habits that have helped them negotiate this very difficult path. Having a positive attitude, maintaining a strong faith, developing a strong support system, eating healthy, and exercising have made a huge and positive difference to many.

Understanding the ins and outs of supplemental oxygen

Many of us are thrust into the world of supplemental oxygen use with little help or instruction. I have some videos and many columns that can help patients adjust to life with supplemental oxygen.

I’m so grateful to my PF friends for sharing all they’ve learned. I pray that these words of wisdom will be a blessing to you.

I’d love to hear from you

What stood out to you from this post? What words of wisdom would you add to this list? What has helped you adjust to your diagnosis of PF/IPF?

Join the discussion in our forum for newly diagnosed PF patients or leave a comment below or share via social media.

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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.