January 3, 2013 | by Amanda Gunn
During my time as a graduate student at City of Hope, I absorbed some degree of medical knowledge purely due to passive diffusion from my surroundings. I know all the inflammation markers and basic blood work tests, and if somebody rattles off their cancer treatment protocol, I have an idea of the severity of the cancer. I have grown accustomed to the blanket of knowledge keeping me safe whenever I go to the doctor for the smallest ailment.
It’s unfortunate that my work was in DNA repair rather than bone repair because six weeks ago I was thrust into the absolutely terrifying realm of the health-care system, navigating without even the tiniest shred of understanding of what was going to happen.
In a melodramatic and clumsy move, I had fractured my patella in a very bad way. Looking at the X-rays and hearing this dismal news barely fazed me, but when I was told doctors couldn’t operate due to insurance reasons and that I would have to navigate the extensive referral system to see a specialist first, well, that certainly put me to tears.
I spent my first few days unable to move and feeling like a huge burden to my family, who had to bring me food, help me to the bathroom, refill my ice pack, nudge over the bottle of water that had somehow fallen just out of my reach and recharge the cordless phone that was now glued to my ear.
My first step out of this mess was to try to get an actual human being from the insurance company to talk to me so I could get approved for whatever the future had in store for me. Then, in a moment so victorious I actually squealed with glee — please note that I do not normally squeal and am rather embarrassed at this little outburst — I heard a human woman’s voice on the other end of the line. A real live human who was in the correct department and could get me started on what has been a very long and painful journey. While there was a time in my life, just over six weeks ago, when my adventures included surfing and rock climbing, I have learned to accept that today’s triumphs include increasing my passive leg bend by a degree or two. Although along the way, rather than risking a brutal wipe out, the most treacherous moments in my life have been when I had no idea what was going on.
I will start by saying this: I have an excellent orthopedic surgeon whom I was referred to after I switched to a superb medical group that has guided me through all of this. That being said, physicians who know what they are doing sometimes forget that you don’t. We have all been there, when a non-scientist friend asks you what you are working on and after a few minutes you realize their eyes have glazed over and they have no idea what you just said. It took me about a week before I was indescribably grateful for my access to PubMed, an online database for references on life sciences and biomedical topics.
Not only did I research my condition, my doctor, my doctor’s publications, and cutting-edge research articles that might someday be tangentially related to a problem I may have in the future, I asked about a million questions at every doctor’s visit. Because I have more than a passing interest in public health, it occurred to me just how much of this information would not be available to the typical patient. It wasn’t just the research I found online, but also the foundation for the majority of my questions and the fact that my doctor seemed to enjoy taking the time to answer them. While initially terrified by the unknown, I was beginning to take control over my situation and I can’t help but think this process went far more smoothly because of it.
Confirming my beliefs are the thousands upon thousands of websites and message boards dedicated to patellar fractures, where people have nervously typed out their questions. “Is it okay to put weight on my leg?” “When can I start moving?” “How long is it going to take?” “My knee is still the size of a grapefruit, PLEASE HELP!!!”
These are the desperate questions that seep into your brain late at night when the pain meds have stopped working and you are lying there trying to weigh the importance of sleep versus the hour — yes, hour — it will take you to re-tighten your leg brace and claw your way to the bathroom to take more. If there is one thing I have learned, it is that fear is an overwhelming part of the recovery process.
In the beginning, I felt horribly unlucky because I had managed to become completely disabled, yet excruciatingly cognizant of everything. Over time, though, I have realized what an amazing opportunity I have had. My experiences are similar to what so many people go through every single day. The unknown of whether their crying baby has a fever or is just teething, or the waiting on biopsy results. The fear is the worst part, and it can be so easily combated by knowledge and community support.
This is why health education programs are so important to every community. At City of Hope, there is the Sheri & Les Biller Patient and Family Resource Center. For the greater community, the Department of Public Health has a number of educational programs. As a member of the community, I urge you all to pay attention to these programs where they may be applicable to you. As a citizen with extra specialized and health-related knowledge, I urge you to volunteer and help educate others.
Individual people never expect disaster to strike their life, but it can and it will at some level and at some point. Whether through a community-based public health education program or a private program run through an institution, these educational opportunities are responsible for preventing medical nightmares and giving strength to those who have fallen victim to them. Although inexpensive relative to therapeutics and doctor visits, these programs are saving lives.