...or how I learned to navigate and manage my own medical care with the help of some amazing doctors in Minnesota.
Over the years, I've learned that It's alright to question what the experts say works for most people. I want to know whether it's true for my body. Now that I am 69, I feel a bit like the Skin Horse from one of my favorite books, The Velveteen Rabbit, by Margery Williams.
"You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
Each body is unique and, until medical care is designed for the individual, we are stuck with care that is designed for a generic body. So, I've learned that knowing your own body is critical if you want to make sure you are getting the care you need.
I began getting to know my own body when I was in my mid-fifties and my primary doctor diagnosed me with arthritis after reviewing x-rays of my hips. He prescribed Celebrex to help relieve the pain. I began practicing yoga regularly, hoping it would cure my arthritic hips. One day, however, I could barely make it up the stairs to the yoga room and, to top it off, the Celebrex was no longer managing my pain. I was limping along whenever I walked and I had begun to notice how often I avoided walking because of the pain. Shopping at the local mall with my daughter was quite an experience. I had to sit down to rest at each store. She encouraged me to walk tall, like a puppet on a string, surprised to see her mom--who had always been strong and healthy--limping around like an invalid.
Finally, I went back to the doctor. The new x-rays indicated that my right hip had gotten much worse, but my left hip was also pretty bad. I remember his words. "Bone on bone." He referred me to an orthopedic specialist who, he said, he would "recommend for his own mother."
The specialist took more x-rays and told me that I had the hips of a 70-year old. He showed me the x-rays and said, "When you can no longer do the things you need and want to do, give me a call and we'll schedule hip replacement surgery." I was in shock, but it didn't take long to reflect on the many things I had stopped doing. Instead of going inside the bank or the post office, I deposited checks and bought postage stamps at the drive-up window and the walls in my hallway supported my crooked gait.
I decided to schedule the surgery. Following my pre-op exam, my primary doctor told me I had Factor V Leiden, a blood-clotting defect. This meant I would need to monitor my blood after hip surgery to avoid a possible blood clot. Sure enough, I was on Warfarin after my hip replacement surgery, being monitored regularly. My father was not so fortunate. He died suddenly a few days after a knee replacement surgery when he was 72 years old.
I have a passion for knowing my family history, but I now realize it is equally important to know my family’s medical history. I pay attention to my body’s reactions and have learned to trust myself as much as I trust my doctors. I am not afraid to let them know if something doesn’t feel right to me. And, luckily, I have a primary doctor who listens to me.
Three years ago, a series of medical events in my life began to influence this “know thy body” mantra. One day, after a severe headache would not go away, I went to an Urgent Care, where I was referred to the ER. I asked my daughter to take me to St. Joseph’s Hospital, which I thought was aligned with Allina clinics, where all my medical records are located.
While my head was throbbing, I tried to remember details of my medical history. The staff at the hospital performed a spinal tap to test my fluids. Fearful that I may be contagious, everyone was washing up and wearing masks before coming into my room. Infectious disease docs waited days for something to grow on a petri dish. Finally, I was diagnosed with Bacterial Spinal Meningitis and sent home with antibiotics and pain medication.
Two days later, I fainted in my living room. When I made an appointment with my doctor to discuss it, he said he had not received a report from the hospital, but he recommended that I monitor my blood pressure because pain medications can lower blood pressure. Before I even made it to my appointment, I had another accident. I leaned over to plug in a TV and my 12-year old, artificial hip dislocated.
Once again, I ended up in the ER. This time, I asked the EMTs to take me to Abbott Northwestern, an Allina hospital. The ER team put my Titanium hip back in its socket and I spent the night in the ER. The next morning, I was fitted with an uncomfortable brace and sent home. I called my hip surgeon for a follow-up appointment and learned that his group does not work with Abbott Northwestern Hospital. If it should happen again, he recommended United Hospital.
Once I was out of the brace, I experienced dizzy spells over a weekend and called my doctor’s office the following Monday morning. The nurse said not to wait for my own doc, so I made an appointment at a nearby clinic. The doctor there ordered an EKG and said my heart rate was very low—40 BPM (and I’m not an athlete). He told me to get to the hospital as soon as possible. I ended up in Intensive Care at Abbott Northwestern Hospital.
I heard a nurse say, “Bradycardia,” and once the tests were completed, I had surgery to implant a pacemaker that keeps my heart rate at 60 BPM or higher. The day I was to be discharged, one of the cardiologists informed me that I needed to have an angioplasty before I could go home. I was exhausted. I begged the doctor to discharge me and promised to schedule the test after I had healed from the pacemaker surgery. He unhappily agreed, and prescribed Metropolol as a precaution. Afterwards, a nurse from the Penny George Institute agreed I had made the right decision.
I started taking the medication and, almost immediately, felt my heart racing. I called the hospital to discuss my symptom and another cardiologist recommended I stop taking the drug. Whew! After meeting about five or six cardiologists the hospital, I happily decided on the one for me and made an appointment with him for an angioplasty. He scheduled a non-invasive screening test and I was fine. Being my own advocate paid off this time.
It was time to address my left foot. Over the years, my foot pain had gotten worse and I had consulted with various experts. Diagnoses ranged from Posterior Tendon Dysfunction to Arthritis. Finally, I was referred to a foot specialist who said he could perform a tendon transfer procedure that may help. I know my body. I know how many times I have fallen and torn the tendons and ligaments in both of my feet. His solution made sense to me.
His assistant recommended scheduling the surgery at United Hospital. A wise choice, since his primary hospital is not an Allina hospital. During my pre-op visit, my primary doctor recommended taking an aspirin a day after surgery to minimize the risk of a blood clot. The day after my surgery, a Saturday, the physical therapist recommended transportation and help getting into my house. She also said someone would contact me within 24 hours to follow up with in-home care.
When the van came to pick me up, I assumed there would be a ramp to wheel me my up my front steps in the wheelchair, but the driver was not aware of the situation, so he called for help and an emergency vehicle met us at my home. Three men lifted me into my house in a wheelchair. When I hadn’t heard from the in-home health care department after 48 hours, I called and discovered I was not in their system. But that changed immediately. That day, a physical therapist arrived at my house.
Throughout my recovery process, I continued to feel some pain on the outside of my calf, but all the specialists believed it was just a part of the healing process. Two and a half months later, I learned the bone graft was still not healing properly so I had to remain non-weight bearing. After reading more about how blood thinners may slow the healing process of bone grafts, I decided to take a low-dose aspirin instead of the full aspirin I was taking.
I should have checked with my doctor before I decided on that plan of action because, about ten weeks later, my physical therapist looked at my red, swollen leg, concerned it may be a DVT. He suggested I contact my doctor immediately. I called my clinic and explained the situation, but I couldn’t get an appointment for two days. It was almost Christmas, but I knew this was urgent, so I saw a doctor at another clinic that afternoon. He did not think it was a blood clot, but he ordered a D-dimer blood test to rule it out and said the lab would call me immediately if the test results were abnormal.
No call from the lab. Two days later, the doctor who ordered the blood test called. He said he was going to order an ultrasound because the blood test was abnormal. I was surprised and worried. He was out of the office when the tests arrived from the lab. After the ultrasound, I was referred to the ER where the doctor prescribed Xarelto, a new generation blood thinner. For a couple of weeks, I experienced tingling in my hands and fingers, anxiety, and continued pain in my leg. I contacted my doctor and was switched to Eliquis. Again, I listened to my body and I continue to be grateful for the doctors who listen to me.
On another note, I learned about what is and is not covered by Medicare. I also learned what my secondary (not supplementary) insurance covers. More often than not, I have to remind staff members that I have secondary insurance plan, not a supplementary insurance plan. My secondary insurance generally pays all expenses not covered by Medicare, as long as the provider is in my network.
At one point during my recovery from foot surgery, my sister looked at me and asked, “So, who is managing your care?” I looked back at her and said, “I think I am.” Although I have made errors in judgment, I continue to be grateful that I’m still mentally and emotionally able to remember the details about my own medical history, my family’s medical history, and my insurance benefits. But what about all of those people out there who are not able to remember all the details. Who is managing their care?