“We are not going to be a tragic love story.” That was what Sydney said to me the first night in the hospital. Her phrase became our goal for my recovery, our mantra, our war cry. It was the mindset that determined everything we did for the next 270 days. It motivated us to seek new ways to communicate with medical staff and to find good doctors.
Our journey to my becoming a successful partner in my medical care began with a 104-degree fever. After a few days in the hospital, I was diagnosed with osteomyelitis, a bone infection in my T12 vertebra. A colony of dormant strep bacteria woke up and were consuming my spine. On the 13th day, Sydney took me home. I went from being in the hospital and septic to being home on IV antibiotics to combat the bugs.
It was a losing battle. Into our 10th week of IV treatment, the X-rays showed no signs of improvement. Our infectious disease doctor said, “The antibiotics could stop working altogether. Your spine could collapse. You must pick a spine surgeon.”
We had our pick of four world-class orthopedic surgeons working at the best teaching hospitals in the area. Well, three actually. The fourth “wouldn’t operate on [me] with a 10-foot pole.” All the hardware already in me — Harrington rods and a plate from T2 to T10 — promised the surgery would be long, complex, and bloody. The remaining three surgeons each favored procedures very different from one another. And that was our hold up.
We couldn’t get any of them to give us all the information we needed to make our decision. We asked why their diagnoses and surgical approaches were so different. But none could take us from start to finish in how they decided on their specific actions in a clear manner. Instead of an explanation, each merely maintained a “this is how it’s done” stance. We were even told, “Ask 10 surgeons, get 20 answers.” Twice. We left these appointments frustrated and confused.
Our infectious disease doc advised, “I’d go with the surgeon who seems most confident.” They were all confident. We needed something else to go by. Confidence alone does not demonstrate competence. Words — clear, honest words — demonstrate competence.
I resigned myself to the first surgeon we consulted. He had treated me before. My spasticity and infectious disease doctors recommended him. I wanted to get the surgery over with despite my unease.
Sydney freaked out. “Dr. Number One? You’re picking the doctor who said, ‘…If I can find a general surgeon to assist me?’ That’s the guy you’re picking to make this NOT a tragic love story? No way!” She trusted her unease and refused to settle.
She realized the usual ways of picking a surgeon were not working. Next, she did something unusual. She asked for help from a different kind of doctor altogether. Sydney called her colleague Dr. P., a psychiatrist, who said, “You need to consult a surgeon who doesn’t have a vested interest; no financial incentive or potential reputation boosts. Many of my patients have gone to Dr. L. after other surgeons have botched things up.”
Sydney hung up the phone. “Of course,” yelled Syd. “We need someone who fixes other people’s mistakes!”
Right Doctor, Right Procedure
We arrived at Dr. L’s office at 10 a.m. He had agreed to meet with us as a consultation to help us pick out the right procedure, and therefore the right surgeon, to settle on.
Dr. L. came into the exam room, sat on a stool, rolled closer and chatted with me eye-to-eye. “Sorry I’m late. My patient-family meeting ran long. We started an orthopedic surgery and recovery unit next door. Patients do so much better when their families stay with them.”
The first five minutes can tell you a lot about a doctor. Sometimes it’s the opposite of what you’ve heard in the past. He seemed to be focused on rapport, respect, relationships.
“Let’s take a look at what you brought,” he said. We handed him a stack the size of two phone books. Pausing only to ask questions, he read the hospital and out-patient summaries. He took the same care with our handwritten daily symptom logs, which we had started with our infectious disease doctor, and had maintained over the last few months.
Sydney jumped in to ensure he saw me as a person with goals. We were still newlyweds, under two years, and this was not going to be a tragic love story. Beyond my injury, he showed a real curiosity in how Sydney and I lived.
He put up the current X-rays. “Tell me about your original injury, the other infections and surgeries.” I rattled off my complete history. I was careful to use terms from the medical field in my description (more on this later). Back in the hospital we found that the staff treated us differently, better, when we used their language. Dr. L. responded favorably, too.
He looked at the infection site, and then pointed to the arch in my upper back. Kyphosis had begun to hunch me forward. He ran his hands down my spine and felt the rods pressing against my skin. “Has anyone ever X-rayed you sitting up?” No one had since my original injury 10 years earlier. “Well let’s take some now.”
Just minutes later, his X-ray tech was bringing him new films of me sitting up. “Hey, Dr. K! Have you got a minute?” Twenty minutes pass with him in the hallway with Dr. K and then Dr. L comes back in, “We’ve got a plan.” He puts the X-rays up and begins drawing on them with a pencil. He explains not only what the infection has done to the T12 vertebra, but how my old fusion is affecting me. “We have to restore balance.”
He talked us through how he would fix my back. There was a logical connection between the problem, the data, and his approach. It made sense. We watched his hands as he mimicked removing my rods; although he had thick muscular hands, the motion was delicate and expressive. “Nothing good happens in the OR after 10 hours. We’ll do the surgery in two procedures spaced three days apart.”
As a scoliosis doctor, he had an innovative approach to recovery — no stabilizing back brace. “I just don’t want you to twist, you’ll break the rods, but I want you weight bearing, it builds bone.” He explained that I’d be sitting up three days after surgery and home in two weeks.
By now, we had picked our procedure, and our surgeon. We asked Dr. L. if he would take on my surgery. He said yes. “You’re a young, active guy, I want you to go out there and live your life to the fullest.”
It was 1:30 in the afternoon when we left Dr. L’s office. It was the first time I felt calm after leaving the ortho-spine surgeon’s office. On the drive home Sydney and I debriefed, as we did after every appointment.
We talked about what was important to us about Dr. L. and his treatment plan. We never had to press him for answers; he addressed our questions directly. He respected our input, the information we brought verbally and in our personal records, in addition to the clinical documentation. Unlike the other surgeons who wanted to fuse my spine ever more, focusing only on the T12 damage, he wanted to maintain a supple spine and preserve my freedom of movement by addressing the entire spine. He was collaborative and prudent (“My partner, Dr. K will babysit the cord while I work on the spine”). All of these traits and philosophies were absent in the other surgeons we met with.
Partners in Healing: Owning Responsibility
Having a good surgeon played a key role in becoming a successful partner in my care, but it didn’t end there. Sydney and I employed our own expertise as well. I had a decade of living with a spinal cord injury and all the knowledge I had acquired along the way. And Sydney was a learning style specialist and brain researcher who makes a habit of studying how people think, problem-solve, and interact with one another. Using our talents in the rehab setting post-surgery contributed to our successful outcome.
The two surgeries had been a success, and after three days in the ICU I was transferred to the rehab wing of the hospital. Sydney was staying in my room, and would for the next three weeks as I recovered. She was a fierce protector, warm companion, and driving force in partnering with me to manage my care in coordination with Dr. L. and the hospital staff.
Sydney started with taking control of the white board in the room. She moved the “Call. Don’t Fall” sign off to the side, and created spaces for vitals, to-do lists, and questions. There were things for me to do, like using my incentive spirometer hourly. Internal appointments with X-ray, PT, OT and admin staff went on the board. She put checkboxes next to the questions. She knew an unchecked box would drive people to do whatever it took to check it off. We got a lot of questions answered quickly because of that insight. Everyone checked and updated the board, nurses and doctors alike, as part of their regular routine.
X-rays were another effective communication tool. Dr. L. used X-rays in the office to diagnose and explain my condition to us. In the hospital, he brought the X-rays into my room to give us status updates on the new fusion. Sydney began posting them in my window.
Simply putting the X-rays in the window enhanced my care and well-being. It was easy to show nurses why I shouldn’t be twisted or moved in certain ways. Every time Dr. L. came in, he went to the window where he pointed out the significant changes and how my spine was healing.
For me, it was therapeutic to have them on the window. They were not only visual markers of progress, but they became a conversation piece for our visitors. I could talk knowledgeably about the procedure and the hardware inside me. This gave them a new appreciation for the magnitude of what I’d just been through. This ability gave me a sense of ownership of the surgery and my recovery process.
Talking was an important part of the success as well. It was especially important that we learned how to have conversations that included key medical terms. There were many benefits to speaking to medical professionals in their language. Our opinions, observations, and questions were considered carefully. In the hospital room or at a doctor’s office, using medical terms made our interactions more productive; we didn’t waste time reviewing fundamentals, we just moved to the next level of understanding. They treated us more as colleagues than clients.
In our conversations, we only focused on understanding key terms for descriptions, causes, conditions and real-world implications. I picked up a lot of medical terms over the past decade of living with SCI, but didn’t always understand them as well as I thought I had. Sydney automatically remembered everything except the exact word. To bridge the gap, Sydney began bringing a copy of Frank H. Netter’s Atlas of Human Anatomy to our meetings. Filled with illustrations labeled with the terms, Sydney asked the doctors to use the book when explaining diagnoses and procedures. This brought together symptoms, X-rays, terms, concepts, and real-world implications when we talked about me. The Netter book helped us learn the vocabulary and we also used it as a stand-in when we couldn’t remember the words or their meanings. It allowed us to ask things we would have skipped because we didn’t know how to phrase the question properly. In effect, it allowed us to become experts using simple words and gestures.
One final area where we developed our own expertise was logging. Keeping detailed logs which included date, time, and details of the item being tracked (temperature, heart rate, medicine taken, elimination volume, etc.) were essential to our success during the infection. Our infectious disease doctor was able to make crucial decisions about my antibiotics and treatment because we provided detailed information during our visits. If we had not practiced this discipline, my doctors would have gotten partial recollections rather than catalogs of diagnostic data.
In the end, this was not a tragic love story. I didn’t die of an infection. Sydney didn’t let me pick a surgeon who did not have the best approach; we picked one who wanted me to “live life to the fullest.” And the two of us worked together to use what we already knew about medicine and brains to develop new areas of expertise while we were going through a major health crisis. Everything we said and did demonstrated to our medical team that we had the capacity to be partners in my healing and we would settle for nothing less.
It worked. We got care that was higher quality and more inclusive. The tools we had are available to everyone. How we used them is what made the difference. We hope that what we learned will help you become a successful partner in your care.[/fusion_builder_column][/fusion_builder_row][/fusion_builder_container]