Everyone has their own unique life experiences. Sometimes these experiences can leave you feeling alone. People who have been diagnosed with Pulmonary Fibrosis can often feel lonely at times.
Many tell us their story about life with pulmonary fibrosis. Every month we will highlight one individual’s journey with Pulmonary Fibrosis. This month we present Gaylen’s story.
About 3 years ago, I wasn’t feeling well and had developed a little cat cough. I thought there might be something wrong with my heart, but my doctor sent me to a pulmonologist. I went through all pulmonary tests and discovered I had TLC (Total Lung Capacity) somewhere around 78%, The doctor said it wasn’t anything to worry about, and started me on a sleep apnea program.
In September 2010, I went back to check in on the sleep apnea. The doctor did another full set of pulmonary tests. My TLC had dropped to 64, so the doctor ordered an MRI and chest X-ray. He diagnosed me with pulmonary fibrosis and recommended I do a total lung biopsy.
I said, ‘I don’t think so.’
He said, ‘But it’s the only way to know the cause.’
I said ‘You are saying I have three years to live. If the biopsy is not going to change that outcome, then what is the point?’
He asked, ‘Aren’t you curious what caused this?’
I said, ‘No, I am more interested in what will help me through this.’
He said, ‘Nothing will help. You will eventually end up on oxygen. I can put you on corticosteroids, but there can be bad side effects.’
The doctor was treating me like I was Patient #38 with pulmonary fibrosis, not like an individual with my own needs. He was just telling what he does for everyone else with Pulmonary Fibrosis. He was not happy when I turned down the lung biopsy.
The second pulmonary doctor showed me my MRI and explained there were channels around each one of my lungs that were pretty much closed. I didn’t have any honeycombing in the lungs itself yet, but there were abnormalities… My little cat cough had progressed into something more serious… I figured this could go one of two ways: either I get better or I get worse. But either way, I would do it my way. I went home and Googled ‘alternative therapy for pulmonary fibrosis.’
I went into a strong program of taking good care of myself, and that included systemic enzyme therapy. I have an impeccable diet and started juicing. A friend who is a physiotherapist for cardiac patients brought in a treadmill and exercise bike for me. Another friend is a yoga instructor and put me on a breathing regime. You need to check into anything you can think can be helpful to you, including breath work and exercising
I urge anyone reading this not to accept what you’ve been told and know there is a way to recapture what you thought was gone forever. You have to be disciplined and give it time. You will be so happy with the results. I personally intend to stay with these enzymes as a maintenance program for the rest of my life. It’s just such an improvement I can’t even explain it.
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