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Two Hip Replacement Surgeries: Lessons Learned about Patient Responsibility, Self-Advocacy, and Personal Health Information

By Eileen Cassidy Rivera

It’s true. I’m much younger than the average age for hip replacement surgery. At 44, six years ago, an orthopedist replaced my left hip. Six months ago, a different orthopedist replaced my right hip. I guess you could say I’m “really hip.” To what, I am still trying to find out.

Throughout my medical journey and two hip replacement surgeries, I learned some important lessons I hope might help others who face similar situations every day:

• We need to take more responsibility for our own health by doing research on our health conditions as well as the physician’s recommended medical “cures.”
• We need to advocate more assertively for ourselves throughout the medical establishment. We can’t assume physicians have access to anything close to our complete medical history.
• We need to be the keepers—at least for now—of our own medical records until complete, accessible, and timely electronic medical records become a reality.

“You’re So Young”

The typical reaction when I tell people I’ve had two hip replacement surgeries is, “You’re so young; what happened?” It’s a normal comeback. It takes me back to my senior year of high school when I was in a freak car accident. It’s a story my husband and kids have heard more often than they care to remember.

On that particular day, I made a decision I’ll always regret, to skip my last class and sneak out the back door of my high school. As I was crossing the street, out of nowhere I was struck by a car that collided into another car. I was hit twice on the left side of my body.

The next moment I recall was looking up in a strange place with my mother’s arm draped around my shoulder, waiting for me to open my eyes. When I finally did, I had a throbbing headache, couldn’t move my left leg, and had no idea where I was. After hours of x-rays and observation at Strong Memorial Hospital in Rochester, New York, on March 30, 1981, I went home on crutches with lots of bruises but miraculously escaped a broken bone, or so I thought.

Life went on normally for the next 10 years. In my late 20s, I started to suspect that something wasn’t quite right in my left leg. I could never seem to get comfortable in a seated position. I tried to ignore the discomfort but was constantly fighting throbbing leg pain.

It was way before the Internet or Google so it wasn’t easy to research what I was feeling, let alone find a specialized doctor to help me feel better. One day, I walked by a chiropractor’s office and decided to schedule an appointment.

And so began my journey in the healthcare world. The chiropractor who worked on me during those years remarked that I was “so young” to have this kind of pain. Unfortunately, I didn’t benefit from chiropractic adjustments. The ensuing years were filled with visits to orthopedists. In those years, there was nothing close to an electronic health record, so every time I met a doctor, I’d write down my medical history over and over again. I saw four different doctors across the Washington, D.C., area. When all they could find was a “really healthy spine,” the only relief they could offer was muscle relaxants.

When I got married and became pregnant with my first child, I ditched the drugs and thankfully gave birth to a healthy boy. During my first pregnancy, that throbbing leg pain temporarily went away. A few years later, the same pain came back. During those years of sleepless nights, caring for my baby, and holding down a demanding job, I wondered how I would get through each day. When I had the time, I exercised to strengthen my back and legs, hoping I could overcome the pain naturally.

Eight years later, I became pregnant again and gave birth to a healthy girl. During that pregnancy, I had a similar experience of temporarily escaping leg pain that came back with a vengeance one year later.

During a skiing trip with my family, I knew I needed to take drastic action. I could barely hold my toddler daughter while walking across the snow let alone make it down the mountain on skis. When we got home from that trip, I booked a visit with a different chiropractor. She recommended I have my hip x-rayed, which no other doctor had suggested.

“My hip?” I asked her incredulously.

“Yes, I think you have arthritis in your hip. You need to get it checked out right away,” said my new best friend.

And so the next chapter of my healthcare journey began.

A Diagnosis – Finally!

By that point, I had seen five orthopedic surgeons, none of whom had hinted about the possibility of arthritis. I was in tears of pain and hope when I walked into a new orthopedist’s office. The first question he asked was, “Have you ever been in an accident?” That was the first time a doctor had asked me that question. I told him about my accident, now 27 years in the past. He looked as if he had just discovered a cure for cancer. He quickly directed me to the x-ray room and instructed the radiologist to take x-rays that would soon change my life.

The x-rays revealed a narrowing of my left hip joint and a fracture in my left hip bone, which the doctor explained caused osteoarthritis, a deterioration of cartilage tissue between my hip bone and hip joint. The cartilage tissue that served as a cushion or shock absorber between my hipbone and hip joint was gone. After the injury I experienced as a teenager, my body did not grow new cartilage. Quite literally, the doctor said, “It’s bone on bone.”

The impact of getting hit by two cars caused a hairline fracture, which was apparently undetected in x-rays after the accident. Over the years, daily running and having two kids slowly contributed to the onset of osteoarthritis in my left hip.

Without hesitation, the orthopedist recommended hip replacement surgery as soon as possible.

Hip Replacement No. 1

I kept thinking, why did it take so long to find out what was causing that pain? Why didn’t any of the doctors I’d seen over the years hint about the possibility of arthritis as a cause of my pain? Why didn’t they ask me if I’d been in an accident? When they sent me for x-rays and MRIs, why didn’t they catch osteoarthritis in my left hip? Why were the doctors only looking at my back? Why weren’t they curious to look at other body parts that contribute to leg pain?

These questions were swirling in my head leading up to my hip replacement surgery in May 2008. I was so focused on getting ready for surgery and preparing for post-surgery that I finally stopped beating myself up for not prompting or asking questions that may have led to an earlier diagnosis.

A few weeks after my surgery, while I was home recuperating, I began to come to peace with what had happened. A physical therapist helped me learn how to walk again. She came to my house twice a week and taught me exercises to strengthen my leg, hip, and gluteus maximus muscle. The surgeon had made a four-inch incision in the gluteus maximus to remove the damaged joint, which was then replaced with a prosthetic titanium ball and socket along with a stem inserted into my thighbone.

The physical therapist also became my sounding board for venting about my long and frustrating healthcare journey. She assured me I wasn’t alone and told me many of her patients shared similar stories about confusing hip and back pain.

The next chapter of my healthcare journey began as I slowly recuperated and started to experience a pain-free life. I began to return to an active lifestyle and resume doing the kinds of sports and activities I enjoyed. I took exercise classes, rode my bike, practiced yoga, and went skiing again. I could finally sleep at night without being awoken by constant arthritic pain.

When I had my left hip replaced, my doctor told me I should expect my right hip to go in five years. At first, I didn’t believe him and dismissed his prediction. He explained how I’d be favoring my right hip, causing the cartilage in the joint to wear down prematurely. Over the next few years, I rarely thought about that conversation and instead focused on enjoying my pain-free life.

His prediction, however, proved to be true. About two years ago, I started to feel new pain in my right hip. My original surgeon had moved to the West Coast, so I went to a new orthopedist. He took an x-ray of my right hip, which appeared normal. I continued doing exercises including going to a boot camp, but it became increasingly difficult to ignore the pain.

Seeking Treatments Before Surgery

Last year, I made an appointment with the orthopedist to talk about pain relief treatments. He suggested a cortisone injection, which I had never had and was willing to give it a try. When I arrived at the hospital for the injection, my previous medical history was not easily viewable. I had to tell the nurses about my previous hip replacement surgery and two births, all at the same hospital. The hospital had just implemented a new electronic health record system, but I couldn’t believe how little information it knew about me

I was wheeled into an operating room where I saw my right hip on a 32-inch screen and watched the doctor inject cortisone into my hip. The nurse’s first reaction was, “You have no space between your hip bone and joint; where is the cortisone going to go?” I stared at her, wondering what I was doing there. She pointed her finger at the area on the x-ray monitor where I should have had a visible space. Instead, it was all white. She told me the chances of feeling relief from the cortisone injection would be minimal. I was bewildered. Why had I gone through this whole ordeal for no relief? After the procedure, I talked to the doctor to understand what the cortisone injection would accomplish. Without hesitation, she said I had arthritis, told me she would send the x-ray to my doctor, and recommended we discuss other options.

Hip Replacement No. 2

Other options? The only real option was as clear as day. Daily activities became less pleasurable due to nagging hip pain, so I knew it was time for my second surgery. And so I began the next chapter of my healthcare journey. I made an appointment with my orthopedist to look at the x-ray taken during my cortisone injection and discussed next steps.

Getting ready for the procedure was déjà vu all over again. I knew I wouldn’t be able to drive for at least six weeks. Thankfully, my husband held down the family fort, and my boss, a medical doctor, fully understood the situation and was very supportive.

My second hip replacement surgery went well. Like my first surgery, I was up the next day with the help of a walker and a physical therapist. I went through one month of home physical therapy at home and two months of outpatient therapy. I slowly regained my strength, mobility, and range of motion. I started practicing yoga again, which has greatly accelerated my recuperation. I am on a path to a pain-free life. Hallelujah!

I decided to record my healthcare journey to help me remember the long saga and also to hopefully help others who might be experiencing similar feelings and frustrations and who could benefit from answers to questions they might not know to ask. As I reflect on the past three decades navigating the system to cure a condition that more than 306,600 people have addressed through surgery, I feel lucky.

Be Your Own Healthcare Advocate

How important it is to be your own healthcare advocate is more apparent to me now more than ever. You can’t wait for the doctors to prompt questions you need to ask. You have to do your research (mostly online) and talk to medical professionals and people you know who’ve gone through or are experiencing a similar health situation. Also, you can’t rely on your heath information being transferred from old health charts to electronic heath records at your primary care physician, specialist doctor, or hospital.

Leading healthcare technology companies, including my employer, provide state-of-the-art technology to enhance patient-physician relationships through patient and provider portals and other care continuum tools. Increasingly, healthcare systems in the United States and globally are implementing this technology to empower the patient’s role and command of their own wellness. Despite my professional background, it’s become evident to me that it is the patient’s responsibility to connect the dots for doctors, weave your own medical history, and guide medical professionals to an outcome you deserve.

Eileen Cassidy Rivera is now thriving and active. She is vice president of marketing for Harris Healthcare Solutions, a global healthcare, communications, and technology company where she applies lessons learned from her personal healthcare journey to lead the company’s strategic growth and positioning in the healthcare industry. She lives in Alexandria, Virginia, with her husband and three children and may be contacted at eileen.rivera@harris.com.