Starting in 2006, I visited a pulmonary doctor after being diagnosed with pneumonia multiple times. The pulmonologist found that I had scar tissue in my lungs, and we monitored it for years. He always said that it wouldn’t spread so not to worry about it – but things quickly changed in 2012. In February of that year, my doctor let me know the scarring had spread; not only in my right lung, where it was originally occurring, but also to the left.
After being diagnosed with IPF, the Pulmonologist said not to worry he’d take care of me. But he also informed me that there was no cure, and through research I learned that most people only live around 3 to 5 years after diagnosis. At that moment, I realized I did not like the process that I was going through. I decided that it was not the route I wanted to go – I couldn’t just sit back and try not to worry about my health while someone else makes decisions for me.
I was desperate for something to be different because I did not like the answers I was getting – I needed to be able to make a decision, but instead, decisions were being made for me including taking medications that in combination had a high mortality rate. I decided to go online to research a new path to solutions. After searching online, I eventually found a resource called PatientsLikeMe. I noticed that people were writing about their experience, so I made an effort to start blogging about mine. I had the opportunity to talk to others with the same condition and get advice about how to move forward.
Fellow bloggers suggested I seek a Center of Excellence for lung disease, because they are geared toward performing cutting edge research and treatment of specific conditions. From there, I started my journey of being empowered to have a voice in my own medical care.
Once I went to the Center for Excellence, the doctors said I had options, saying that it was “best to have a lung transplant.” I went through a rigorous evaluation process, and along the way, started to blog more and more about my journey. While blogging, a group reached out to me and asked if I would be willing to tell my story in front of the Food and Drug Administration (FDA), because the agency was looking into two new drugs that could slow the progression of IPF. That experience allowed me to talk about my condition, and how to combat it with a team of doctors that were truly focusing on my health.
I am currently in a program that is preparing me for a lung transplant, and am in the process of being evaluated by another center. I have a team of three specialty doctors at the centers and a local Pulmonary doctor that all work with me quite frequently. When my local pulmonary doctor is unsure of the answer, he is willing to learn with me and to research IPF. Because there are over 200 lung diseases—and IPF is one of the less frequent ones—we are learning together. But it is always important that I speak up and share my questions and concerns.
Since I’ve started advocating for my own medical care, I have gained experience working with welcoming and open medical professionals. I’ve learned that it is important to keep your caregiver involved, because even though he or she is not the patient, they will have concerns about your well-being and can recommend treatment options. Your caregiver will have questions that come from a completely different perspective but are just as important. I’m also in a clinical trial for another drug that may help IPF. I believe trials are important for the patient and for people who may be diagnosed in the future.
I have received opportunities to discuss my experience publicly after starting to blog about my condition, and I have found that being vocal about one’s needs is the most important thing you can do. Further, as a patient, I’ve come to understand the importance of doing research for yourself - because of all the people invested in our health and well-being, we always have to be an advocates for ourselves. And over 5 years after being diagnosed with IPF, I’ve proudly beaten my life expectancy rate, and continue to live my life advocating for expanded treatment options.