Wanting to know what the author of a blog sermonizing about knee repair has experienced in her life is a very fair question. And one asked by a reader of this blog. Knowing other readers may feel unmotivated to read a stranger’s chronology of health care events, the below article is written to try to painlessly guide you through my orthopedic life leading to my current juncture: two total knee replacements (TKRs), one revised knee (RTKR) and several interventions in between.
My orthopedic story started when I was in eighth grade and living near Minneapolis, Minnesota (1971). I tore the cartilage in my left knee while practicing for a hoped for spot on the cheerleading squad. Since those were the days before arthroscopy surgery was available (the less invasive/small rod insertion approach to knee repair), I underwent two general surgeries over the course of a year to remove torn and floating pieces of cartilage. The scarring that resulted told the first of several stories. Each story left a scar, lessons learned and plenty of memories. For example, during the second surgery, the surgeon forgot the x rays and had to have me wheeled out of the operating theater for new xrays and during that same surgery he thought it best to also scrape all the cartilage off my young kneecap. Still those surgeries did not stop me from using my knee without restrictions. Until my early twenties, I went downhill skiing, cross country skiing, dancing and biking (no-handed) on my way to and from the local university and from work – a county hospital where I served as a nurse’s aide and where bounding up and down four flights of stairs delivering lab results was part and parcel of my work. It was also fun.
Yet, by the time I was twenty–two (1978), this unrestricted lifestyle ensured that my knee turned osteoarthritic. My knee ached and swelled. I found myself arriving late to college classes if, between them, I needed to walk a great deal. The orthopedic doctors I consulted warned me that osteoarthritis would not improve unless my lifestyle adjusted or I would find myself wheelchair bound before I was twenty-five. What they did not know, nor did I until I watched myself respond to their declaration of ‘arthritis’ in slow shocked time, was that the ghost of my grandmother settled into my perception about the diagnosis and its subsequent management. I absorbed my grandmother’s approach to severe rheumatoid and osteoarthritis having witnessed it first hand while growing up: she walked with a cane until she needed a walker which led to a wheelchair and eventually to her bed where she stayed bound for seven years before her death. With my prognosis, I pictured Grandmother, and thinking I was being proactive, picked up a cane as my daily tool to slowly walk my way to classes on the University of Minnesota campus. I parked my bike in my parent’s garage and let my pool pass at the gym lapse. I also announced to my co-workers at the hospital that I would no longer run labs and I arranged to shift to a ward secretary position where I could sit my way through to each pay day. I also slowly walked my way into depression. After all, isn’t that what can and will most likely happen when a person is forced to change their life against their will and when they see no hope for a reasonable solution to a problem?
Into this period of my life came an unlikely source of hope and motivation: a university professor of Anthropology by the name of Dr. Harvey Sarles. I was a student in several of his classes and had quickly learned after a few in-class disagreements, to keep him at arm’s length. However, distance was not possible since I was required to meet with him about a project. At the appointed time I knocked on his office door, cane in hand, to attend the meeting. Looking back, it is not hard to recognize that he had given some thought to my adopted cane and carefully steered the conversation from the project to the appearance of the cane in his class. He asked me why I was using it and so I commenced with the chronology of events that led me to needing it. I found myself quietly but earnestly listening for guidance and any nuggets of insight from his outside perspective. Instead, he changed my life. I cannot recall all that he said, but he did convey these basic messages:
1) We are what we think we are, but we can change to be what we want to be. You are not your grandmother. Who do you want to be?
2) Doctors are not the final gate-keepers of medical information. Research all that you can about your condition and own it. Seek horizontal, not vertical relationships with your doctors.
3) And, the unforgettable final and clear message, “Get rid of the cane. That one belongs to your grandmother”.
Even now, years later, I am still touched by his gruff but thoughtful care. I hobbled out of his office feeling confused but energized, struggling to absorb a new paradigm, a new way of looking at many things in my life. I did retire the cane and I began looking for a new doctor. I also kept my activity levels tame. I was still late to class if long walks were involved. Pain was still my companion, but I did not feel like its slave. I got to work empowering myself with whatever I could find related to arthritis. I also, eventually, graduated with a BA in Medical Anthropology.
During this time of hope, I never let myself stray too far from the views of orthopedic doctors since I truly believed they were the only kind of doctors suitably trained to deal with bones and arthritis. My search for a ‘horizontal’ relationship with an orthopedic doctor led to Dr. David A. Fischer (1978), who specialized in arthroscopy and the emerging field of Sports Medicine. Dr. Fischer had recently introduced both new approaches to the Twin Cities and was considered the city’s expert on knees in general. So began a six year doctor – patient relationship that included one arthroscopy, followed by a patella repositioning procedure requiring a bone graft from my hip, three screws and a nice long scar, and a scar tissue breaking session under general anesthesia. But, unlike my reaction to the diagnosis of ‘arthritis’, I embraced my newly restructured knee situation with vigor and steered my six-month post-surgery repair time towards returning to some semblance of an active life.
In those days the subject of total knee replacement or TKR never came up to me. I thought I had achieved full and permanent joint health. Sports medicine personnel were not inclined to tell young people to stop their activities so I returned to biking, long walks and yoga. I also lugged a full knapsack through Europe for another six months. Thanks to Dr. Fischer, who advocated on my behalf, I was eventually accepted into a demanding Peace Corps assignment in a particularly remote and isolated area of the Philippines. There I squatted for two years among members of the T’Boli community of Lemsnolon. I comfortably climbed hillsides, owned a horse for local transportation, climbed up and down from my stilted bamboo hut and walked great distances.
I returned to the States and pursued professional work, married and had two children. We eventually settled in the Washington DC area (2000, 43 years old). Until then and since my last surgery with Dr Fisher, my left knee orthopedic incidences included very infrequent moments of catching and locking and one dislocated left kneecap (circle dancing during graduate school. I ruined the party). I rebounded from those incidences with physical therapy and rest. Over time the incidences included grinding pain and swelling…the usual symptoms of a distressed joint. By this time, orthopedic science had progressed in leaps and bounds with TKR procedures becoming commonplace. Dr. Ubelhardt, my then orthopedic doctor of choice in Washington DC and with whom I would occasionally check in, began to press me to accept the need for a total knee replacement. He believed I would be happy with the new removable ‘pop in and pop out cartilage’ TKR model. I balked. I had studied them and their lifespan. Psychologically I could not embrace the fact that my bones would be deconstructed, once again, and my energy channels would be permanently interrupted by two walls of metal. His enthusiasm always met with my mortification, and I would leave his office determined to avoid that final solution. I continued to take matters into my own hands. I pursued acupuncture for pain, simple yoga for muscle strengthening and stretching and physical therapy exercises for muscle strengthening and alignment issues. But bone on bone does heal by itself. By the time he gave me one more pitch for a knee replacement (2004, 47 years old) I was at the point when my knee was controlling my lifestyle more that I wanted it to. In fact, one day a hill got in my way and the option of a TKR suddenly felt possible, even necessary. My two boys and I were walking back home from a nearby pool that sat at the base of a hill and I knew that I could not walk up it this time. I returned to Dr. Ubelhardt and told him I was ready for a TKR. He assured me that I would not regret this decision and we commenced securing a surgery date (September, 2004). I was surprised by the amount of relief I felt in having made the decision to replace my joint. I found myself preparing for the surgery with the exuberance of someone packing for a new adventure: positive energy, hope and confidence that this would be the right thing to do went into my overnight hospital bag. My eyes were wide open about the demands of physical therapy and of the repair time at home. My family was also set and ready to support my healing. Thankfully, my sister Deb also flew in to help out. We both did not know at that time that her assistance would be the first of three times she would be asked to help post-operatively.
Though healing from the TKR was an unusually long and torturous six-month intensive process, I was, overall, a lucky beneficiary of Dr. U’s construction work. I’ll only footnote an unfortunate episode when, two years later, I slipped on a thin veil of water and fractured the kneecap on the same TKR, requiring the cap to be wired shut, crutches for four months and half a year of physical therapy. Aside from that, I enjoy 14 years of an active personal and professional life. Dancing and snow sports were eliminated entirely. Instead, I happily swam my way to a Master’s level, hiked gentle trails and walked a great deal wherever we lived.
My right knee had been working exceptionally hard over the years and rarely complained. But about ten years after the first TKR, signs of similar decay showed up on my otherwise sturdy right knee. While I had by then learned of adult stem cell therapy, I was not be able to afford to travel to the United States, stay in a hotel and receive its benefits. Instead, I subjected myself to another TKR (2014, 58 years old) buoyed by the overall positive experience I had with my left knee.
Relationships, no matter how they appear, are rarely static. Underneath the surface of the left TKR, standard daily activity was slowly but surely forcing natural debris, produced by friction between metal on bone and plastic, to float and settle between the structures, loosening the metal from the bones, dissolving portions of the remaining ligaments and disrupting my life with episodes of giving out, catching, and swelling, or ‘failing’ in orthopedic parlance. Finally, my left knee had enough and gave out one excruciating morning in March, 2018, never returning to normal. That July, I had a Revised TKR complete with a longer, heavier set of metal devices into bones that were also freshly trimmed to hold the new joint. My particular recovery from this surgery continues and has been exceptionally painful, especially during the first five months – and complicated by also moving to another country. The probable need to repeat a Revised TKR on my other knee in due time is a thought that hovers and haunts, but I try to keep it at a distance.
I am no longer in my twenties or late forties. Clearly, this 62 year old body needs more time to recover and more assistance than before. Still, I am forming another revised life with this new knee, one that maximizes isometric exercises, weight lifting and swimming while minimizing any walking whatsoever. I enjoy pursuing interesting stationary activities such as writing, reading, photography and bookmaking. Political punditry from my armchair is fast becoming a role I play in the home and with an interest group here in Bangkok.
In reality, finally adjusting to a more stationary lifestyle has taken all of my life to achieve. And though this kind of adjustment is still not easy to accept, it is easier than it would have been if I were any younger.
So, there you have it. My orthopedic story in less than 7 pages! Lessons I learned along the way:
- Knowing your diagnosis by its name does not mean you share everything related to it. Know yourself and you can truly heal yourself holistically. Taking time to understand how and why you react to your diagnosis/prognosis as you do helps build your arsenal for healing the joint and the full person it affects.
- Bodies speak to us in their own and varied languages. Stewarding our bodies requires us to learn its languages in order for it to help us heal.
- Finances are often a key issue in ones’ healing, especially if pursuing uninsured therapies. Consider tapping personal fundraising options including online ‘crowd funding’ sites and homegrown fundraising dinners. People want to help and will if asked. I wish I had.
- Bodies are not easily replaceable nor painless if they are replaced. No matter what professionals say, metal and glue in bones, like screws in wood eventually deteriorate. Deterioration hurts. Entering a marathon (Brooke Shields, 2018, Florida) after a knee replacement is just plain…unwise. Youthful energy and ability to heal has its benefits and its consequences but striving to return to our previous activity level after a joint changing surgery is not always a sign of success. Returning to ‘Go!” is not respectful of the stress that surgery has on the body over time and often sheds a dim light on the person’ s inability to adapt, to learn, and to mature as a steward of his or her body.
- Shop for medical professionals who try to understand the above even though they work within their own constraints, defined in part by insurance requirements and standardized prognoses and surgical procedures.
- Adventure differently. Use your creativity and venture into sedentary activities you have only wondered about. And then, when you have to or want to ‘go!’ go wisely: walk less, be driven more. Wheelchairs allow you to go further, longer. Canes come in crazy, coordinating designs. “Go” where you have not gone before using different strategies, fueled by the power of knowing that you are protecting yourself for a longer, and equally interesting, future.