As many of my readers know, I was intubated in an ICU about two months ago. (Do scan the comments—many of my readers disclosed their own health stories or those of friends and family.) I promised to post an update after my follow-up MRI and neurologist appointment, and we were incredibly relieved to learn that I’m going to be fine.
But in the month that has passed between my initial post about this incident and now I’ve had time to reflect on who I am, the work that I do, the patients I see, and what’s truly important.
Since my hospital discharge I have felt better each day. I still have a bit of positional vertigo and mild tinnitus, but these are better than they were even a month ago, and scarcely noticeable most of the time. I do feel that I need a bit more sleep, which is either from the six months of medication I’m taking or is a sequela of the traumatic brain injury. Thankfully, my memory and executive function are the same as they were before my illness, which is not to say my memory was perfect beforehand: Libby has complained for years that I don’t remember things that she says she’s told me. But now I have something to blame. (Unfortunately, Libby no longer buys the excuse.)
Exercise is crucial to me, both physically and mentally. Fortunately, I’ve been able to return to exercise, even running up to 10k (in freezing weather) and playing futsal (a type of indoor soccer). But it was not easy. Being sedated in an ICU for only a few days causes significant deconditioning, weakness, and stiffness, even in people who exercise regularly. In particular, I remember vividly how tight my hamstrings were after I was discharged from the hospital. I couldn’t even walk without feeling the strain! It took a great deal of effort to overcome the effects of immobilization. I can’t imagine how people must feel after they have been immobilized for even longer periods of time, particularly if they don’t start out in good shape. Fortunately, I’ve been able to regain my flexibility and endurance. Rebuilding my strength has been more difficult, but I’m working on it.
Getting back to running (which I had not done since my June 30 soccer injury) really helped my mental state. My first run was in Washington, DC, when I ran up Connecticut Ave. and through the National Zoo. As I passed by the animals with the wind in my hair I felt truly alive. And playing soccer with friends again (which had also been on hold since the summer) was also a wonderful feeling. Sadly, the time off did nothing to improve my soccer skills.
(Which reminds me of the old joke about the man who asked his surgeon if he’d be able to play the piano following his surgery. When he was reassured that he would he exclaimed, “That’s great—I’ve always wanted to play the piano!”)
I am not a worrier, but a small part of me was concerned about my follow-up. Despite my feeling well, is it possible my neurologist could have made a mistake? Diagnosis is sometimes complex and physicians are merely human and therefore prone to errors (see Groopman’s How Doctors Think). In this case my neurologist postulated a series of events to explain my illness, when usually we try to simplify our explanations. Could this really have been caused by an early tumor or a vascular malformation, about which the radiologist had expressed concern? We use follow-up encounters to verify or revise our hypotheses. I resolved to confront with equanimity whatever it should be.
Then, unexpectedly, the day before my MRI I received some sad news. A wonderful man in his early 60s, whom I was privileged to take care of for almost two decades, died suddenly at home. This was totally unexpected as his medical conditions had been well-managed and he took excellent care of himself. The acute grief hit me like a ton of bricks, like losing a close friend or a family member. I will miss him.
So that evening and the next day, when I saw patients, my sadness over losing this patient bled into anxiety over my impending MRI that afternoon. My melancholia was particularly ironic because, as has been my tradition for 20 years on my last clinic day before Christmas, I looked festive wearing a bright red sweater, red socks, and a Santa Claus hat. I felt like Canio in Pagliacci, hiding my feelings behind a costume and a painted smile.
I finished my paperwork and headed to the MRI suite.
My first MRI was in 1987, when it was called NMR imaging (for nuclear magnetic resonance). Because of the dangerous sound of the word “nuclear,” it was renamed MRI (for magnetic resonance imaging). That scan was performed for a study I was doing in medical school. I wanted to harness the relatively high-resolution and digitized images of this then new modality along with supercomputers to generate three-dimensional reconstructions of spatially complex brain structures that could be manipulated in real-time for both education and diagnosis. To do this required a detailed NMR of someone’s entire brain, and since it was my study it had to be my brain.
In those days, such an intricate scan (very low-resolution by today’s standards) took many hours. As I lay in this new-fangled contraption and tried to ignore the very loud sounds it generated, I wondered if it would disclose some occult tumor or other pathology. Now, lying in an infinitely more sophisticated device (generating probably 100 times as much information using a tenth of the time of my NMR decades ago), I again was struck by how loud the machine was (you can download the soundtrack of a brain MRI here and the NY Times wrote a brief article about the source of the noise, which can be up to 125 dB) and again wondered what it would reveal. (I may have had similar thoughts during my last MRI in the hospital, but was unconscious and have no memory of it.)
My thoughts turned to patients who are in similar situations. Although we do a better job masking the sterile environment and the noise (with headphones through which one can listen to a choice of Pandora channels—I chose Jimmy Buffett both for its relaxing themes and to take my mind off the cold in Boston), it’s still very noisy and scary. And even more so when anxiety is overlaid.
My scan would not be read over the weekend, so I examined the images myself (although I am far from an expert at reading brain MRIs), which I could do because I am on the medical staff of our hospital. To me it looked better than the previous scan, but I reserved judgment until I saw the official reading. How do patients cope with several days of uncertainty following a Friday or weekend MRI? I understand that there may not be enough staff radiologists on duty to read scans performed over the weekends, but from the patient’s perspective waiting is difficult. At Beth Israel Deaconess and an increasing number of medical centers and diagnostic facilities, patients can view their test results and sometimes even the radiology images themselves. But sometimes patient access is delayed until the ordering physician has reviewed the result or the result is embargoed for a certain length of time based on the type of test result. And many facilities still don’t allow patients to see their results at all, which is just a travesty.
Some patients may be alarmed at what they read (particularly the ubiquitous risk-averse radiologist verbiage that includes a healthy dose of “Cannot exclude tumor or [insert your horrible disease here]; clinical correlation recommended.”) But having information early is better than not having that information, and the OpenNotes studies have shown that even when we let patients see their physician’s office notes they feel more empowered and engaged in their health, and the benefits far outweighed any risks.
This week I saw my neurologist who interviewed us, examined me, and reviewed my scan. He felt that everything was much better and that I should continue to improve. He’ll see us one more time in a few months, which will be around the time that I’ll be able to resume driving again (in Massachusetts drivers are prohibited from driving for six months following a seizure).
As we returned home, Libby and I breathed a collective sigh of relief. Although I felt well and seemed to be doing well, it was so reassuring to know that nothing was lurking beneath the surface that may come back to haunt us.
Several weeks ago, a colleague asked if I had viewed this illness as a gift yet. It seemed an odd question at the time. But although I couldn’t articulate it when he asked me, I do now see it that way, for several reasons.
First, as I reflect on my illness it colors how I care for and communicate with my patients. I’m also able to draw on my experience when I give presentations or teach about patient-provider collaboration and patient experience. Also, my positive regard for those around me has not diminished at all: I see friends and colleagues in a whole new light and truly appreciate them like never before. I feel truly blessed.
Now on to 2014, and hopefully a year with fewer experiences as a patient but even more empathy for my patients.
View related post here.