When The Doctor Becomes The Patient - The Good, The Bad, The Ugly
Dr. Megan Long is bringing us our next story in our series "When the Doctor Becomes the Patient". As medical professionals, we know too much. We are too educated. We are too aware of all the of the things we should be afraid of when we end up on the "other side" as the patient or the patient's family member. Dr. Long shares her story of how she ended up with resistant septic arthritis.
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A year. A full year since I crutched into hospital where I work, just like I was there for a shift, but instead I was there to say that I thought I needed a work-up and the pain was just too bad. That’s when I start the clock of MRSA septic arthritis, though it had brewed for about 10 days at that point. When I took off my bandage in front of the NP who was seeing me as a patient and not a fellow for the first time, my knee was red and swollen, and pus drained out and pooled onto the floor. Well that looks infected, doesn’t it? It hadn’t looked like that at home, but I had screamed when my daughter barely grazed my propped leg at breakfast that morning, because the pain was so bad. I had been up several nights in pain, but thought I just had to solider through since I had gone to an Ortho clinic visit that same week and was told it wasn’t infected. In the ED, I waited on my labs, calculated my Kocher Criteria (clinical diagnostic criteria for the likelihood of septic arthritis), and asked my husband to bring my laptop since I knew I wasn’t going home and this overachiever wanted to get caught up on fellowship projects in-between surgeries and vancomycin doses.
It’s so hard to accept it when you, as a physician, become a patient.
The journey of the last year is not one I would repeat. I got a post-op infection from an outpatient knee scope. I hadn’t had a normal knee to begin with, after a congenital bone disease, playing college ball after I had been told I couldn’t play sports at age 13, and then finding a passion for triathlon later in medical school. I had been beating up on that knee for a long time. But it had kept going and just needed a little meniscectomy and loose body removal to get back to regular life, which is for me very active. The cost of it all, of going at such a fast pace and never taking care of myself or slowing down, was MRSA, a resistant bacteria. Maybe MRSA was just the 1 in 1,000 complication of surgery, and I was the lucky one who got to have a real life-check that day and every day for the next year. That, or, it turns out you really can’t work like a resident forever, be a mom of 3, and race endurance races without sufficient rehab and strength training. Oh, and sleep. You can’t do it without sleep, at least not for long.
I don’t do anything halfway, and my body and MRSA were no different. It took 3 open knee surgeries with washouts to sufficiently clean out the joint, prior to IV antibiotics for 8 weeks and 2 more weeks of oral antibiotic. My ESR, a laboratory marker of inflammation, stayed high, over 100, for a long time. I had so many adhesions that I needed another surgery, towards the end of my course of IV antibiotics, just to get my knee moving again because I couldn’t bend past 20 degrees. I had spent 2 months in excruciating pain, unable to tolerate even a slight bump to the chair my leg was propped on. I could never sleep, waking every hour or two in pain. I also lost so much muscle mass, about 30-plus pounds from the nausea and abdominal pain caused by the antibiotics. I couldn’t eat and took multiple other medications to be able to tolerate fluids. I was anemic from surgical blood loss and also weak. I fainted a lot, which led to more time not moving around, and more weight loss. The infection and the treatment became one big spiral of loss, not even considering the toll it took on my psyche. The worst of it was that the inside of my knee was so friable, that I actually tore my ACL and had a severe tear of the meniscus that had been frayed prior to the infection. Because I was a fellow in the ED, my Ortho Trauma surgeon showed me video of him ranging my knee in the OR and how the meniscus just flopped off in the joint, back-and-forth, barely attached to anything. He said it was similar to the incision they made to repair tibial plateau fractures. Cool, I thought. Then, man, that sucks.
My time on 6 Jones as an inpatient was trying. It’s hard to allow others to care for you when you are the one who is used to caring for others. I think moms in general find this difficult, and doctors are notoriously horrible patients. I was in so much pain and not the best version of myself. Though I had family support, I missed my kids so much. I had good nurses and not-so-good nurses. I had techs that I was so very thankful for and truly valued the pride they took in their job, the professionalism with which they helped debilitated folk like myself do demoralizing things like pee and poop on a bed pan or just try to move enough to get sheets changed in the hospital when any movement of your body causes excruciating, mind-numbing pain. I definitely asked for an above knee amputation multiple times, and the Ortho residents were really good about not rolling their eyes at me. I was in a dark place, but I logically thought that it would be great weight-reduction for racing with a blade later, and a good way to end the pain...until I mentioned it to one of my favorite trauma nurses overnight. I asked her about amputees and phantom limb pain. She said that they have to treat their pain with opioids, but then they also beat on the stump and say, "I end here, I end here, I end here," over and over again, to learn that they don't have their limb anymore. I guess for me that was a moment of remembering all the horrible traumas we see in the ED and knowing that I don't end here, even though a lot of our patients do. I followed in the Ortho Trauma clinic, so I saw even more of the repercussions of what we manage in the ED. Eye-opening to say the least.
When someone sees you with your PICC line and crutching on a walker and having to stop to rest, that person with hardware in one leg and one leg missing as well as a splinted hand is sure to give you words of encouragement and tell you their story, too. I went through a lot, but many of our patients go through more with less resources and more obstacles. As a medical professional, I knew how to advocate for myself, but it wasn’t easy. In the hospital, I remember desperately trying to do so but being too groggy on pain meds to think straight. I couldn’t sleep from pain and from being woken up for vital signs and various rounds. I was febrile and septic and nauseated from all the general anesthesia that I got in one week’s time. The day I found out that I had torn my meniscus (I didn’t know about the ACL until much later, and we still aren’t sure when that happened.), I was really down. Non-weight-bearing for 6 weeks sounded like one more hurdle that I didn’t have time for, which is now hilarious, because I was on crutches for months and months due to the infection and the pain. In that moment, however, I was upset that I would have a harder time being a PEM fellow and being a mom of 3 on crutches for 6 weeks. Little did I know the journey I had in front of me.
I was deflated. I missed my kids. I was crying alone in my hospital room. The floor environmental services (EVS) lady came in as chipper as always to clean my room and saw me tearful. She gave me a pep-talk. My EVS lady! She has no clue how much those words helped me. I still think about it to this day, even though I don’t even remember her exact words, I remember how she lifted me up during a very dark time. You better believe, especially now during the time of COVID, I thank every EVS person I see, every shift. I like to think I would do it anyway, but after what happened to me, and what they do for us and everyone in the hospital now with COVID, I feel a deeper sense of gratitude. They are keeping us all safe, and they do such a thankless job in the hospital. If nothing else from this whole experience, I appreciate my perspective on that. I appreciate how being a patient made me see and feel the way all our medical provider decisions come to light and how important ancillary staff are in caring for patients and helping patients feel actually cared for. I always try to sit down with families and play with my kid patients in the ED or hold babies and talk directly to them. I want them to know I care, but I also just love kids, and that's why I'm a pediatrician. I now realize that those moments of humanity are even more important to families during their difficult times in our hospitals.
There were so many ups and downs on this journey, and they keep coming even now. I definitely had moments of being more positive than my doctors about my condition. At my first ID (infectious disease) follow-up appointment, I told my ID doc that my nights were like having a newborn because I woke up every 1-2 hours, except instead of breastfeeding a crying baby, I was screaming out myself in pain. He was worried about my inflammatory markers because my CRP was 79 at that first visit. I mentioned to him that in the ED it had been 256 and that it was trending down. I said, "Maybe you need to be a more glass-is-half-full kind of guy." That was the good and the bad of it. The ugly was that I still couldn't bend my knee. Even after another surgery to lyse adhesions (scar tissue from so many surgeries and the healing from the infection itself), I still had such a swollen knee even a month out from that surgery. My knee was just angry. Part of me was, too, but with so many obstacles, you really have to look on the bright side and celebrate the small victories, like putting shoes on without wincing in pain, washing your own hair, or being able to walk. My Ortho doc drained 100cc of fluid off at my first post-op visit from surgery #7, the lysis of adhesions, and we both looked at each other, thinking the same thing—he said to me, "At least it's not pus." Maybe that's my mantra for life after this.
At least my knee isn't full of pus.
I have COVID, but at least my knee isn't full of pus.
Still getting medical bills, but at least my knee isn't full of pus.
I'm so behind on life, but at least my knee isn't full of pus.
I think I tore my rotator cuff, but at least my knee isn't full of pus.
I look back at pictures over the past year, and the saddest part is how much I feel like I missed of my kids’ lives. Forget that I spent a year not running, a year in pain, months wondering if I would ever walk again, AND that I’m still wondering if I can ever be a triathlete again or can run for my mental and physical health, something that was once so intrinsic to me being me. I missed a gap in my girls’ lives that I won’t get back. I read to them, I watched movies with them, and I tried to sit and watch them play, but none of those things could I do for very long without breaking away to cry in pain. I couldn’t take care of them the way I normally would for months. I was groggy and weak and depressed.
We all had an emotional journey together. Just as I had to accept my disability and lack of control over the circumstances of my life, and search to maintain my sense of identity and self, they also had to find their mom in the disabled person that I was. My 3-year-old would tell me, “Mommy, soon your leg will get better, and then you will be back to being Mommy again.” Even still, she talks about the activities we will do when I am better. They had regressions and progressions this whole time just like I did. I just had my 8th knee surgery in June, an osteochondral transplant, ACL reconstruction, and meniscus repair. I told my kids ahead of time what to expect. My baby made me the happiest by actually wanting to cuddle with me this time around. When she was 13 months old last year, she didn’t want anything to do with me because I couldn’t go anywhere with her, and it broke me. This past summer, just shy of 2 years old, she would sit with me while I ranged my knee in the CPM, and her two older sisters would sit as close to me as possible. Somehow, the continuous passive motion machine and my crutches, surgical sleeve, and brace had become our normal. They know what physical therapy is. They know about crutches and walkers. They know that Mommy needs to ice. But none of them remember when Mommy used to go running, and that’s what bothers me the most when I think about the new direction my life might take now.
Over the last few years, I had a goal to do an Ironman as a mom. I ran through most of my pregnancies, and I even pushed Kona in the jogging stroller for runs when pregnant with Juno. As a second-opinion Olympic Team orthopedic surgeon told me when she recommended I give up on my knee and look toward a total knee replacement, “You’ve always been an athlete.” I was only doing short races during fellowship and was just getting back to running after baby 3 when I got my MRSA. I spent so much of the last year in the worst pain of my life, and I am still healing and rehabbing. Now I’ve had time to reflect. Do I really want to prove this to myself, one more Ironman? And would the person I am even stop at one? Do I want to prove that I can do the scheduling and the lack of sleep and the strategic nutrition that training for an Ironman while being a full-time doc and mom to 3 growing girls would take? Do I want to be gone from them for that long? My new orthopedist, one of the top in the country (My knee and I don’t mess around anymore.) seems to think that I could do as much as I want after the 12 to 18 months of rehab that this most recent surgery takes. I’m on month 4, by the way. I am 8 months away from even contemplating the start of an Ironman training schedule.
Like so many athletes now, though, I am in limbo, and not just due to my injuries and rehab. Who is to say we will have a return to normal sports any time soon with the COVID-19 pandemic? It’s hard to say what returning to my sport would be for many reasons. Maybe my knee couldn’t do the training, maybe the newly diagnosed arthritis in my shoulder would mean I have to give up the zen of swimming and therefore triathlon, too. Maybe I had my heyday in the sun and now it’s time to move on. Perhaps the only racing any of us will be doing is virtual, and then maybe conflicts with kid and work schedules won’t even be an issue anyway. Well, where’s the challenge in that?
If I can be selfish and truly honest for a moment, I just miss the mental high and clarity that comes from running. That sense of inner calm and focus that I have for the whole rest of the day. The last 2 weeks in physical therapy I have been increasing my Alter-G percentage, the amount of body weight and therefore impact on the joints that I do while running. This fancy treadmill that blows up like a balloon holds you suspended in spandex that zip into the bubble, just as weightless as you set the machine. Running at 70% makes me feel like an astronaut in space. Like Flo-Jo flying down the track, or Steve Prefontaine doing "an easy 10", I feel like I could run for hours. Then, last Friday, I ran three one-minute intervals at full weight-bearing on the regular treadmill. I hurt (more than usual) for several days afterward. That was my first run in over a year. After knee surgeries 1, 2, and 5-7, I never really expected to run again. I have made miracles happen on this knee so many times, but I have spent the last year thinking that I need to retire and give up the one thing that makes me me. I know now that I am more than a triathlete, and I know that I can get good workouts from low-resistance exercise, but there’s something in me that still wants to run. I wanted an amputation to run. I just underwent one of the most intense reconstructive surgeries with the longest rehab in the hopes that I might still run, even though it meant putting myself and my family through all those regressions all over again. Somedays I can hear, “You ARE an Ironman,” in my head and actually think about making it to the finish line of another one. And some days, I feel the weight of it all, and all the pain and sacrifices don’t seem worth it. The “anything is possible” slogan might have to refer to the fact that I can be as active as I want with my kids and stay in shape with low-impact exercise, instead of being the athlete I was before. Time to find another sport?
Everything is a process, and I know more about rehab, mental toughness, and chronic pain than I ever wanted to know. Each little milestone meant everything to me and was celebrated in some small way~ bending my knee past 20 degrees, lifting my leg for a straight-leg raise without tears, getting my PICC line out, crutching all the way upstairs for the first time, washing my own hair, putting on pants without sitting down, and now bigger ones like going down stairs faster than Juno! (I can finally alternate feet going downstairs and she is still doing one leg down and both together, like I basically did for the last year until recently.) I had to learn to walk again, which was literally the hardest step of this journey. Now I have to learn to run. My physical therapist mentions that the next step is cutting and jumping, something I gave up on a long time ago when I chose to be a triathlete as my next athletic career after college basketball. I thought I had done my major athletic journey back when I did 6 weeks of non-weightbearing in college and 5 months of intense rehab to finish out my career and play my senior year, following a meniscus repair and loose body removal surgery. I did another year of rehab after college before endurance racing and triathlon seemed possible. How simple and easy that all seems now! I tell my PT at Ironman TMC now that I don’t care if I can ever jump or cut again; I just want to run. But, maybe I do need to jump and cut, though. Violet’s favorite sports now are tennis and basketball. You better believe I’m going to be out there on the court with her when all is said and done.