A patient patient: Sarah Kucharski writes about life with fibromuscular dysplasia
Over many years, through many moves, many medical appointments and many medications, Sarah Kucharski lived with excruciating stomach pain, gastrointestinal distress, high blood pressure and migraines. No doctor was able to provide an explanation for her progressing symptoms, and family members invented their own. (“She must have been suffering from an eating disorder.”) Finally, after her left arm went numb, a doctor recommended an unusual test: an MRA to look for narrowing of the arteries that carry blood to the kidneys. It came back positive. Her left renal artery was 90 percent stenosed, and her celiac and mesenteric arteries were completely occluded. The diagnosis: intimal fibromuscular dysplasia. The disease has no known cause and no cure.
Today, after one triple bypass surgery, one stroke, one lost kidney, one gastric rupture and four cerebral aneurysms, Sarah lives to chronicle her odyssey as a patient. She teaches, she edits, she advocates, she cuts to the heart of matters on her blog The Afternoon Nap Society. And this year, we’re honored that she’ll be joining us at Medicine X.
Below is a Q&A, the first in a series of profiles on our 2011/2012 ePatient advisory panel members.
What’s it like to live with greater health risk than most of us think we face on a daily basis?
Living with greater risk of a major health event is both annoying and a tremendous gift. There have been times in which all I could do was dwell on my mortality and how my passing would affect those I love; however, spending time thinking about these things has allowed me to get my priorities straight. There’s so much we worry about that just really doesn’t matter. I’ve learned to avoid getting worked up over trivial matters; I control what I can. I started a bucket list this summer. I am trying to make the things on my list happen. One of those things is raising awareness of fibromuscular dysplasia.
Do you have any symptoms from your FMD?
My symptoms thankfully are relatively benign. I’m tired a lot. I have a lot of aches and pains. I don’t have the muscle structure that I used to have, but I’ve basically been cut in half twice, so it could be worse. My inseam is only two inches longer than my cumulative scars. I’ve officially earned “road map” status.
Your most recent blog posts were published at 3:12 am, 4:11 am, 3:01 am, 2:39 am, 1:45 am, 3:47 am and 12:00 am. Do you write exclusively in the middle of the night? Do you have a regimen, or do you just sit down at the computer when the fancy strikes you?
I write something most days. Granted, that something may be an email, but I try to put as much care into my day-to-day communications as I do into my professional writing. I admit that I most like to write at night, which my husband doesn’t necessarily like, but at least he understands.
People look at patient behaviors and interactions on the web and make quite a bit of it. What does the movement of patients to the online world mean to you?
It’s about putting the doctor-patient relationship back at the forefront of care. Patients are humans. Doctors are humans. Let’s be humans together. Doctors and patients are coming back to this caring place thanks to technology, which is allowing for the greater exchange of information and communication. I would like to see more of the overall attitude in medicine be one of collaboration and continual learning. No one knows everything all the time. Being open to new ideas and new ways of doing things can bring about positive change. Of course, those who are true innovators are the ones who are willing to throw all the rules out the window, take great risks and suffer great failures. Those who are afraid of failing will not be the ones to change the system.
What effect do you see ePatients having on the medical world?
ePatients are pushing the boundaries of what is “acceptable” in medicine. They are not passive. Some doctors don’t like a patient who comes in with printouts and questions. I wonder if those same doctors like patients who fail to adhere to their medications, miss appointments and don’t adequately describe their symptoms. Which is worse? ePatients can play a huge role in fostering reception for participatory medicine.[When I suffered] my stroke—doctors told me that it was vertigo and that my symptoms would go away as suddenly as they had come on. [They also] failed to see the four brain aneurysms on my scans from the day I had the stroke. The only reason these two issues were addressed is because I acted as my own health advocate. Patients must be involved in their care and not passively accept whatever they are told. Patients should work with their doctors and realize that they have the responsibility to communicate as clearly and effectively as they can to improve their care.
What are the limitations you face as a patient advocate?
Patient advocates must realize that not everyone is like us. Not everyone is ready for a head-on conversation about advance directives; not everyone has the health literacy to read and digest an article in a medical journal. We must be patient patient advocates and work within each situation’s context; otherwise, we risk damaging our relationships.
What will you do in your role as an advisory member on the Medicine X e-patient board? What do you hope to achieve by your participation?
My hope is to encourage more interaction between patients and doctors outside of the exam room. I know that I, and many fellow FMD patients, are practically pleading to be studied so that there are advances in science and more information for future FMD patients. Even if doctors aren’t looking for formal study subjects, at the very least they can take the time to talk to patients and learn from them. Medicine stands to take a few pages from a basic customer service manual. Conferences like MedX that bring doctors and patients together are a great way to foster dialogue, as lessons learned are then taken back to each individual’s community and dispersed. With its focus on emerging technologies, MedX has an added cool factor that makes for excellent talking points, whether that be around the surgical table or around the dinner table.