Guest blog by Jacob Greene
It is a very unique time to have cystic fibrosis. Just over 80 years ago cystic fibrosis was a nameless ailment that caused infants to die months after being born. Today, the CFF’s predicted median life expectancy is just over 40 years. But this statistic does not adequately capture the wide range of CF experiences. Medians, by definition, don’t consider outliers, even though everybody’s CF journey is unique. Another important statistic is that, according to the CFF’s Patient Registry, 50% of people with CF die by the age of 28. Yikes.
Whatever the exact number, my point is that we live in a time in we (people with CF) usually make it to adulthood, but aren’t there for very long. Where does this leave us from an educational/career point of view? Is it worth going to college and graduate school if we are just going to die not too long after getting our degree?
To some people the answer might be “yes, it’s worth it,” to others the answer might be “no, it’s not.” For me personally, my answer aligns with the former. I am currently an undergrad at Stanford pursuing a degree in biochemistry hoping to attend medical school after graduating. To many people this might be unsettling. Two obvious questions that come to mind are, one, “what about bacterial exposure and cross contamination?” and two, “will you be able to keep up with the physical demands of being a doctor?” In response to the first question, there are many specialties that do not deal with infectious patients. Neurology, cardiology, obstetrics and gynecology, most surgical specialties, most oncological specialties, endocrinology, gastroenterology, dermatology, orthopedics, sports medicine, the list goes on. Generally speaking, my CF would not harm these types of patients, and these types of patients would not pose a threat to me. The answer to the second question is less certain. No, I don’t know if I will be physically able to keep up as a doctor. After all CF is a progressive illness. The older I get the sicker I get.
This uncertainty is exactly why I want to pursue a career in medicine. There is a lot of talk about representation in this day in age, but I never hear people talk about individuals with chronic, terminal illnesses becoming doctors. This is unsurprising as it takes many years to become a doctor. We (people with CF) don’t have a lot of time. But that’s why I think it’s so important to pursue a career in medicine. I absolutely adore my doctors and CF team, but every time I go to the hospital I know in the back of my mind that I’m terminal and they’re healthy. As hard as their jobs are, and as much as they see death, there is a fundamental divide between me being sick and their treating sick while being healthy. So, while I hope I can have a long career, I am well aware that this is not a guarantee. In fact, it is an improbability. But that is okay. Even if I drop dead during my residency, I will have been able to help give others life while myself dying. And that’s a pretty beautiful thing.