Questions Raised During Live Facebook Session Were Eye-opening

Last week I had the privilege of doing a live video, via Pulmonary Fibrosis News’ Facebook page. It was a lot of fun to have so many patients, caregivers and medical professionals tune in as we talked about treatment. The beauty of a Facebook Live video is that it is available to watch later, even if you couldn’t tune in live. As of today, 4,900 people across the world have watched it and more than 100 people have left comments about their own experiences with PF. If you missed it, don’t worry; you can watch it now.

I shared my personal story of being diagnosed with pulmonary fibrosis three years ago as a rare side effect from chemo and radiation to treat breast cancer. This only happens to 1%-2% of people treated for cancer. I don’t like being “special,” and I know you don’t either.

Today, I decided to share some of what I shared on the video about living with PF, as well as what I learned from the experience. I belong to a few online PF Facebook groups, and asked my peeps ahead of time what they’d like me to talk about. I got several great suggestions. What struck me was that all of them asked me to talk about medical questions such as:

• What treatment is most effective?
• What type of medications to take?
• What is the difference between PF (pulmonary fibrosis) and IPF (idiopathic pulmonary fibrosis)?
• What about supplemental oxygen use?

I wanted to answers these questions in a credible way, but I’m not a doctor. I was intrigued by the underlying issue of these questions and so many others we need answers to.

Having PF is complicated and there are no easy answers!

1. Pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike. The PF family of lung diseases falls into an even larger group of diseases called the interstitial lung diseases (also known as ILD), which includes all of the diseases that have inflammation and/or scarring in the lung. Most people with PF actually have idiopathic PF (IPF), which means your doctor doesn’t know the cause of your scarring.
2. PF patients are all different. Some patients remain in stable condition for periods of time, others may experience a rapid progression of symptoms, while others might slowly worsen over time. Treatment plans are individualized, based on our medical history and other factors.
3. There are medications available that may slow the progression of our disease. Which ones are appropriate depends on what type of lung disease you have, what caused your PF (if you know – most people don’t), whether you are stable or not, and whether you have other significant diseases. These medications can cause side effects that are tolerable for some patients, but not for others.
4. Supplemental oxygen really helps. It helps us feel better and function better, but obtaining it and getting insurance and providers to cover it can be a nightmare.
5. Ultimately, the only real treatment is getting a lung transplant. Whether you are eligible for one is highly individual as well. Things they look at are our overall health, whether we are at ideal body weight, have other life-threatening illness, our support system, and whether they feel we’ll be compliant with medication and exercise.

No wonder we are confused and unsure about treatment.

While we share a common diagnosis with the same awful end result, we are different enough that there are no set answers to questions about which medications to take, or the best treatment options.

The Pulmonary Fibrosis Foundation has an information guide for patients and caregivers (in English and Spanish). It has lots of good information about the questions listed above, as well as many others.

First, be compassionate with yourself about what you’re going through,

Being diagnosed with a terminal illness is beyond difficult. On top of this, not being able to get absolute answers about prognosis and treatment is maddening.

When I was diagnosed with breast cancer, it was horrible. My best friend was battling this disease and I saw how much suffering she went through. As hard as it was, there was comfort in knowing what the treatment plan was. I didn’t experience confusion about what to do, or feel like I had to figure everything out. I also didn’t have to fight for the basics I needed, like oxygen!

It struck me that not only is being diagnosed with a terminal illness indescribably hard, this is only part of it. Being diagnosed with a rare disease like pulmonary fibrosis adds a level of stress, confusion and sometimes despair that makes our reality a million times harder.

Second, our questions are good.

We want to know about prognosis, treatment, oxygen, lung transplant possibilities, and ways to cope. There are many unknowns that cause us angst, fear, grief and confusion. We deserve to have these questions answered, and it’s so hard when they aren’t. Before I go to my doctor’s appointments I write down my long list of questions and get as many answers as possible. It helps me to know which treatment is possible, and which isn’t. It helps me adjust to reality.

Third, we need support, and lots of it.

We crave information, comfort, hope, and connecting with others who understand what we are going through. This is true for patients, caregivers and loved ones.

There are lots of ways to get support, in addition to the help we get from our doctors, friends and loved ones. We also can get information online, but be careful where you look, or it can be the blind leading the blind. I wrote a column recently in which I listed reputable groups and websites you can check out for information and support.

In conclusion, I enjoyed doing the live Facebook video and interacting with others. Those who left comments were so encouraging and helpful. Our community is very supportive and a source of strength and encouragement to me. I hope to you as well. I would love to hear from you in the comments below.

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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.

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