What I Wish I’d Known When I Was Diagnosed
I’m coming up on the fourth anniversary of being diagnosed with pulmonary fibrosis. It’s caused me to ponder what I wish I’d known before my diagnosis. Three things are at the top of my list.
Ignore information online about life expectancy
My disease progressed rapidly because it was caused by chemotherapy and radiation treatment for breast cancer. My doctor told me I had a few months to a year to live and gave me very little other information. The basic message I received was: “You’re going to die. Get your affairs in order, there is nothing you can do.”
I headed to the internet to learn about my disease, but that wasn’t very helpful, either. Many websites list life expectancy as three to five years, and I believed this, not knowing any better. Over time, I realized that this prediction doesn’t take into account a lot of factors such as new medications, good healthcare, and being proactive in treatment. We can do many things to keep ourselves as healthy as possible.
I know many people who have lived way past the five-year mark. The reality is that everyone is different. I think a healthy viewpoint is to take the terminal illness diagnosis seriously, and do all you can to stay as healthy and positive as possible.
Start exercising as soon as possible
Fortunately, my doctor referred me to pulmonary rehabilitation within four months of being diagnosed. I went through a 12-session program, which included exercising and information about living with lung disease.
This program is a huge help, but there is a drawback I want you to know about. The respiratory therapists come by every 10 to 15 minutes to check oxygen levels and heart rate. They want to make sure I don’t go below 90 percent oxygen saturation level or over 120 beats per minute for my heart rate. While I feel very safe there, I didn’t realize until six months ago that they weren’t pushing me to expand my lung capacity and increase my level of fitness.
I learned I needed to push harder from Noah Greenspan, a doctor of physical therapy who specializes in cardiovascular and pulmonary diseases. He helps patients increase their fitness level. He has dedicated his life to helping patients achieve the best pulmonary health possible, and has written a book that I bought called “Ultimate Pulmonary Wellness.”
I have really benefited from his work as well as his website, which has a lot of wonderful information and videos. His book is available to read (but not download) online. Here is a link to his chapter on exercise. He also runs a Facebook group that I belong to, where he provides answers to patients’ questions as well as wonderful webinars about pulmonary health.
I really wish I’d found Dr. Greenspan four years ago and pushed myself to exercise more vigorously. It feels good to know that although we have the deck stacked against us as PF patients, there are things we can do to increase our fitness level. I wrote more about my exercise program in a recent column if you’d like to learn more.
Do breathing exercises regularly
I learned how to breathe in pulmonary rehabilitation, but never understood how critical breathing exercises are to maintain lung health. It is normal to breathe shallowly when short of breath. Unfortunately, this habit causes our muscles to decondition and use oxygen less effectively.
I learned about some breathing techniques from Dr. Greenspan that have helped my lungs stay as flexible as possible. This is especially important with a diagnosis of PF. Over time, the tissues deep in our lungs become thick and stiff, or scared. These breathing exercises help them stay as pliable as possible.
I also practice qigong for pulmonary health with the Institute for Rehabilitative Qigong and Tai Chi. This program is a series of gentle exercises I do at home while sitting. It has helped me breathe deeply and improve my cardiopulmonary function. You can purchase a DVD or the streaming version to watch on your computer. Here’s a short video that will tell you all about it. I don’t get any compensation for telling you about it.
I hope that hearing about the three things I wish I’d known before diagnosis helps you. Next week, I’ll be sharing even more tips I learned from other patients about what they wish they’d known when first diagnosed. Be sure to check back!
I’d love to hear from you
What do you wish you’d known when first diagnosed? What has helped you the most to live with pulmonary fibrosis? Please leave a comment below.
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.