The Uncertainties of a Career in Medicine Having Cystic Fibrosis

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.

4 thoughts on “The Uncertainties of a Career in Medicine Having Cystic Fibrosis”

  1. Nearly 50 years ago I was in the same place that you are today. I was an undergraduate in biochemistry at Rice University. Graduated in 1973 and went to Baylor College of Medicine in Houston. Graduated in 1976. Became a pathologist and have had a long and successful career at Duke University in Durham, NC. Just turned 68 last week. In case you’re wondering, I’m a delta-F508 homozygote. It has indeed been worth it.

    If you have questions or just want to chat, contact me at ‘victor.roggli@duke.edu’.

  2. Thanks Jacob!! This article was very thoughtful and enlightening. I have spent four decades wrestling with this issue with some regrets for the many times I let my fears dictate my life choices. First let me set the stage by saying I was born in 69 and diagnosed in 70. I currently have around 50% lung function am working fulltime and have a pretty rich, full life. However, when I was born the life expectancy was 9 and the treatments were minimally effective and carried a heavy burden of care. Among the few treatments that Doctors had in their arsenal were: mist tents, manual percussive therapy (administered by my mom mostly), and digestive enzymes that had the unfortunate side of effect of digesting our stomach lining. In fact, by the time I made it to me teens all my friends in the clinic were either very sick or gone. Watching all those kids get sick as well as suffering through my own battle with CF left me angry and bitter so that I adopted a moto of “better to burn up than fade away” which lead me down a dark path. By age 18 I was drinking, abusing substances and making a mess of my life despite several months of outpatient counseling so I was admitted to an inpatient drug and alcohol treatment center where I learned to stop using and live on day at time. When I got out of rehab I lived in a halfway house with other sober folks where I decided to begin college. Initially because I thought like you I didn’t have much time before my career would end I signed up for college with the intent of getting a six month certification in Alcoholism and Substance Abuse Counseling but incrementally I made the decision to complete the school year and then another and then another until I ended up with two Master’s degrees, running a inpatient and outpatient drug and alcohol treatment center and for the last twenty years after obtaining my MPA from Syracuse University working for the State Medicaid program. Early on, when I graduated with my Bachelor’s degree in psychology and organic chem I had hoped to go to medical school but I feared the demands of the journey would make me get sicker, faster so I opted for an advanced degree in psychology instead. However, looking back I regret that I spent nearly three decades of my life keeping my sights low rather than reaching for the stars. In essence, I spent way too much of my life in the hourglass watching the sand slip beneath my feet instead of looking beyond the glass to the horizon ahead. Looking back, if I would have known that I’d still have 50% lung function at 50 years of age I would have made different choices. Now with the new modulator drugs and other brake through treatments on the near horizon the outlook for CF patients is much brighter so obtaining advanced degrees, having children and even grandchildren, as well as retiring on time is well within the realm of possibility. So I applaud your choices, aspirations and dreams and even if you don’t achieve all that you are hoping for you are pursuing what you love despite the fear instead of running from the fear and forgoing what you love.

  3. This is a really powerful story! It can be easy to beat ourselves up over past choices, but hindsight is always 20/20. I find it really inspiring you were able to overcome your past and use your first-hand experiences to help others overcome drug and alcohol abuse. Thanks for sharing!

Leave a Reply

Your email address will not be published. Required fields are marked *