There are years, months, weeks and days that define us as people. Sometimes those snapshots in time come down to a single moment, or a single thought, and it changes us in an instant. This is my moment in time.
Late November of 2018 I started to develop a bit of a cough, and like most I merely figured that I was coming down with the latest bug that was floating around. I didn’t pay much attention to it. Then I came down with a cold that lingered for a couple of weeks. I started to recover and yet the cough continued. After a month or so, I started to think that maybe I had pneumonia or something to that effect. So I started paying closer attention to what I ate, drank, my vitamins, etc. You know the typical routine. The cough was not horrible, but still it carried on. One month turned into 2, and then into 3, and the cough became a little more intense and was accompanied by a worsening soreness in my throat. Then I read an article about a hero of mine; a musician who eventually lost his life in October 2020 to a long battle with cancer.
One thing to know about me is that I always wanted to be a rock star and reading the article about Edward Van Halen and his struggles with throat cancer made me think that maybe that was my issue. But, I tried to put it out of my mind because I was scheduled to take an amazing vacation. So In September of 2019 I jumped a flight. Started my adventure with a 3 day rock festival in Kentucky and ended up in New York. The concert was amazing and the New York hotel was a short walk away from Time Square. I was going to have a great time with the Love of my Life.
One day while I was in my room I coughed so hard that I almost passed out. I thought “Well, that can’t be good”. I made a hasty appointment with my doctor when I returned from vacation. My exam went quick as my doctor became fixated on my breathing and appeared that he had a good idea of what may be affecting me. I had a chest x-ray and a CT in succession, and both results were returned faster than anything I had ever experienced; within 24 hours each. That in itself was alarming to me because when was the last time anyone received results back that quickly?
I will never forget the day my doctor called and gave me his initial diagnosis. I have a fairly good education and am currently working for a healthcare company, and have a rudimentary background in medical terminology and a related understanding of what is being presented. My doctor told me that, to him, I have what is known as (IPF) Idiopathic Pulmonary Fibrosis. I could not believe what my ears had just heard and it took a second for those words to sink in. I sat quietly and tried to listen to the words that followed but my mind was filled with absolute fear. I do remember hearing that he wanted to refer me to a pulmonary specialist and that “…there was still much to be researched…”……”..we’ll get it all worked out…”……blah, blah, blah. I merely had a basic understanding of what IPF is, but it was enough. I knew what he was talking about. I placed myself on a break; I stood up and fell to my knees.
I started to do the one thing that felt more like instinct than anything else; read. I started researching every aspect of IPF, and I read everything I could find, to the point of my PCP telling me to take a break over the holiday and stop reading. But I could not stop reading and it became difficult because all of the articles started the same way. The first few paragraphs all began with what IPF is and that there was no cure other than a lung transplant, and that the average life expectancy was 3-5 years after diagnosis.
Sure, depending on the source of information there were other findings regarding treatments on the horizon, but at my age those treatments are too far away to be of any use. I did find repeated references to a couple of treatment medications that were fairly new, and may be of some help in detouring any acute situations, but are no means a cure.
Attending my first appointment with a pulmonologist was an eye opener and a confirmation of my diagnosis. Indeed I have been diagnosed with (IPF) Idiopathic Pulmonary Fibrosis. At that time I was prescribed one of only 2 medications which had been authorized by the FDA, and one of them was a medication I had read about in my earlier research. The medication is named (Nintedanib) Ofev.
I am taking this medication 2 times per day and at the highest dosage available. I started to research side effects, other dosages, medication history, etc., and then came across the cost. I almost passed out again. I am so Happy and Grateful for my job and my insurance, and I am very aware of how lucky I am because this medication is mind-blowingly expensive. At first I was panicking at how I would be able to pay for this. I know my insurance is going to help, but oh-my-god. Like some; I may have a good job and am lucky enough to have health insurance, but I am by no means rich. There are simple things that many corporations do not take into account like: Rent/ Mortgage, Electricity, Heat, oh and of course….food.
I started to receive so many calls regarding my diagnosis, labs, and pharmaceutical companies, support reps for the pharmaceutical company…you name it and they were calling. One of the support reps from my specialist’s office called and was very understanding of the turmoil my brain was in and provided some wisdom. Very calmly she was able to get my mind to understand that there was help available to me and she put me in touch with an amazing organization. As a result I do not have to choose between the medication to help keep me alive, and my rent/ mortgage, bills, oh and let’s not forget….food!
In November of 2019 I received a diagnosis that changed my life and made me very aware of time. It’s the scariest conversation with a doctor I can think of. Again, there is no cure and there are only 2 medications approved by the FDA to treat IPF. Like most medications meant to help those with a given diagnosis, the medication is merely meant to keep people alive with their challenge and not meant as a cure. There’s no money in the cure – but that’s a different topic.
I’m here with a relentless drive and passion to help those who are in the battle. I’m here to help those with I.P.F. To help those with the diagnosis, their families, and the medical professionals who care for those with I.P.F. From the very basic need to that ultimate goal of a CURE. I’m here.