Dealing with the financial expenses associated with having a rare or chronic illness like pulmonary fibrosis (PF) can be tough. I’m responsible for making sure that I receive all the PF treatments available to me, but I’ve discovered that they come with a hefty price tag.

Among the things to consider are the cost of medications, oxygen therapy, pulmonary rehab, doctor appointments, hospitalizations, and travel expenses. Plus, my husband has his own medical responsibilities.

Having to make difficult choices when it comes to my illness is not easy. Many times, I’ve had to toss a coin or roll the dice, so to speak, to make these decisions. There have been times when my husband and I have had to decide which treatments were most important at the time.

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Financial strain

Living on a tight budget can make it difficult to acquire treatments. That situation is not only stressful, but also embarrassing when I have to explain why I sometimes turn down certain treatments.

I remember the first time my doctor prescribed oxygen therapy for me. I was relieved to finally be able to breathe better. But it took two months for me to start the therapy. This was my first experience with being unable to financially support my treatment.

It also took almost a year for me to afford several of my PF medications. Even with Medicare to help, premiums and copayments can be quite substantial. It took me three years to finally find nonprofit organizations to help with some of my copays.

During my last doctor’s appointment, I was given a referral to start pulmonary rehab three times a week for three months. For some, this might seem like a normal procedure, but for someone like me on a limited budget, it can become a strain. After speaking with my insurance company and learning what my copay would be, I had to decide to either quit rehab or ask my doctor to prescribe fewer sessions.

I could tell my doctor was disappointed with my decision. I explained that more than one session a week would put me in a financial bind. I felt like a complete failure. I believed the doctor would think I wasn’t serious about my illness and the treatments I needed.

Of course I wanted to feel better, I just didn’t know how to make it happen. Being noncompliant isn’t always about rebellion. In my case, it comes down to financial stability.

Finding a balance

I’ve forgotten how easy it was when I was privileged enough to have full medical coverage. I could go to the doctor anytime I needed to without worrying about the cost. I was fortunate to have a full-time job, as did my husband. Things are different now.

My entire world has changed since my PF diagnosis. I had to retire from teaching so that I could concentrate on diagnosing and treating my illness. My husband retired two years ago, and our financial status has changed accordingly. It will be four years since I learned of my illness, and I’m still working on finding a balance.

Making a monthly budget for my medical expenses helps relieve some of the stress. When I visit the hospital for procedures and treatments, I ask beforehand for an estimated cost and whether any payment options are available.

Of course, I find it disappointing to have to choose between treatments, but I do my best to make the best choices. I know that in time, I’ll find a balance. I have faith that at some point, a pot of treatments will be waiting for me at the end of the rainbow.

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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