Patient Advocacy: A Chat with Cat
Next up in our Advocacy Program series is Cat. Cat is a nurse leader and manages several clinics in California. She is also a long-time friend of our Human Resources Director, Candace. We welcomed Cat to our office to share her patient journey of challenges, grit, tenacity, and hope.
As a nurse who was forced into the role of a patient after a tragic accident at work, Cat has a unique perspective of the healthcare system. Even with her professional experience developing programs for patients, viewing healthcare through this patient lens, Cat had a deepened appreciation of the difficulty patients face in navigating the system.
Cat’s story opened our minds to the intricacies of pain and suffering that people go through, not only emotional and physical pain in response to illness or injury, but directly because of the difficulty in navigating the healthcare system, which compounds their suffering. Her story reminds us why we’re on this quest to improve the patient experience, and we hope you find it as inspiring as we did.
Tell us about you and your health journey.
In 2013, I hit my head on a shelf at work. My symptoms went from a bump on the head to not being able to walk and talk within a week, suffering from severe pain in my brain from nerve damage. I was admitted to the hospital for 10 days, and diagnosed with traumatic brain injury (TBI).
The pain in my head was excruciating and constant. I had whole body tremors and paralysis on the left side of my body. I couldn’t tolerate light or sound and had double vision. My speech was distorted, and it took great effort to even murmur. I couldn’t move without help and had to have 24-hour care.
I went from a very active person, training for a marathon, working as a nurse, and taking care of my small children, to someone who could not walk and talk. I was completely debilitated and lost all independence.
Fortunately, my community and support system helped me with every aspect of my care and life.
Because this incident happened at work, I was placed in the Workers’ Compensation healthcare system, which meant I couldn’t see my primary doctor and could only see doctors within the Workers’ Compensation system.
The delay of care was significant because of the structure of the system and lack of appropriate physicians. Although I desperately needed to be in the care of a neurologist, there weren’t any in the system to take care of me, and the one neurologist who did take Workers’ Compensation patients was hours away from my home and didn’t have an available appointment for four months.
Before my injury, I was running seven miles a day. After my injury, I lost my ability to move on my own. I was in a wheelchair for six months, transitioned to a walker, and then a cane. I needed physical therapy, occupational therapy, and constant care for my daily activities, like showering, dressing, and eating. I was put on many strong medications for the pain and nervous system dysfunction.
I was only a shell of the person I had previously been, and it was devastating.
My symptoms were so severe that my prognosis was poor. I knew that I had a lot to live for and was determined to overcome this; hence I created my own plan of care.
First, I started to meditate, and this helped me to cope with the pain and find hope. I knew that I needed to keep my spirits high in order to endure my new state of being disabled. Although I could not tolerate light or loud noises, I was able to listen to inspirational stories of other people who overcame great challenges, and this helped me stay positive.
I also knew that I needed to re-map my cognitive pathways through movement to regain control of my left side. My dear friend, who is a yoga instructor, had offered to come to my house and do very basic yoga with me, starting with breathing. This helped me with my pain and increased my overall strength. The pain I was experiencing from the nerve damage was so severe that my blood pressure had doubled as a result, and the pain medications did not decrease my pain at all.
With the help of my personal support system, I got an appointment with my local acupuncturist. In the past, I had had great success with acupuncture and hoped this would help. As soon as the needles were in, my tremors and excruciating pain subsided — I would lie pain-free for 90 minutes, and it was a tremendous relief! Unfortunately, five to ten minutes after the needles came out, my symptoms came back with a vengeance. I went to acupuncture every other day for the first six weeks and then was able to decrease my visits as I improved. I believe acupuncture was one of the key elements of my recovery.
I also experienced the healing aspects of massage. My neighbors got together and had a masseuse come to my house regularly. As I got stronger and out of my wheelchair, I began using a walker. At this stage, I was able to see another amazing friend, a Pilates instructor, who offered to help me regain control of my body. In Pilates, you focus on small movements, and this helped me to re-map the communication lines from my brain to my body.
Once I got out of a walker and started to use a cane, I went back to the gym with my personal trainer and worked on walking and strengthening exercises.
I was extremely blessed to have all these modalities of healing available to me and for the generosity of these practitioners who donated their time to help me recover.
My days were busy with all kinds of appointments to promote my health. My friends and family collaborated with each other to get me to all of my appointments. They also helped with my children and brought dinner for my family for six months.
There are no words to express my gratitude for my community. I don’t think I would be where I am today if it weren’t for them.
With help from a team of people and my own strong will, it took over 18 months for me to fully recover.
I’m now back to my baseline before my injury, living a happy and active life. My only residual symptom from my TBI is the loss of my sense of smell.
My recovery took a tremendous amount of grit, perseverance, and a village of kind, generous, and talented people. I am truly blessed.
How do you think about and/or coordinate your interactions with your doctor and the healthcare system with the “everyday” things that impact your health outside of that (diet, exercise, social time with friends, etc)?
I believe my recovery was due to my great fortune in being a nurse, understanding the healthcare system, and having an incredible support system.
I am very fortunate to have many wonderful people in my life who came and helped me in every way. The first six months were very tough because I needed help with everything — someone to help me with the very basics of living and help take care of my children while my husband tried to continue to work and handle the massive issues with insurance, my medical leave, and medical bills.
My husband and I had to work as a team in those beginning months, using my medical and healthcare knowledge to get through the system, and using his ability to communicate for me. It certainly was one of the most difficult times in our lives. Not only was my condition devastating, but we also found the Workers’ Compensation healthcare system to be impossible in terms of providing answers or adequate help.
What has been most satisfying about your healthcare experience?
My primary physician was amazing, and I don’t know where I’d be without her. Although I wasn’t able to see her while I was in the Workers’ Compensation system, my husband and I kept her informed throughout my journey. When my blood pressure doubled because of my pain level, I was approved to have an emergency visit with her. She was my advocate and fought for the proper medications and care for me. I really feel that she saved my life and gave me hope.
What was also amazing was how many ancillary practitioners (physical therapists, acupuncturists, massage therapists, yoga instructors, and Pilates instructors) were so willing to help me, and some at little or no cost. They were all so knowledgeable and completely committed and dedicated to providing me the best care in order for me to recover.
What has been most difficult about your healthcare experience?
The most difficult part of my healthcare experience was the coordination of care with all of my providers. The system is not user-friendly — it was incredibly difficult to share my medical records and inform all of my providers of the care I received.
In addition, I encountered some physicians who had little knowledge regarding the effects of TBI. Some were visibly perplexed at some of my symptoms, even though they were classic symptoms for TBI. The world has learned a lot about brain injuries even since I was injured; however, we have a lot more to understand about how brain injuries affect people’s memory, senses, and motor skills.
What are you most concerned about with regard to your healthcare?
I was incredibly concerned that I didn’t have access to a neurologist in the Workers’ Compensation system. With a serious TBI, having a neurologist is essential. However, because I was in the Workers’ Compensation system and they could not get me a CT scan or a neurologist, they told me if I couldn’t manage my pain or symptoms that I needed to go to the ER to get care. As a nurse and leader in the healthcare system, I can tell you that this is an unacceptable answer for a patient needing and looking for proper care.
If you had a magic wand, what would you change about the health system?
I would absolutely change the Workers’ Compensation system. Before being in this system, I always assumed Workers’ Compensation did everything they could to provide the best care and get workers back to work. Many physicians don’t accept Workers’ Compensation patients because the paperwork is complicated and the pay is so low. Patients have to wait very long periods for a doctor who will treat them, to get physical therapy, and for the proper medications. It’s a broken healthcare system leaving patients feeling lost and hopeless. I can’t imagine being in that system without the knowledge, support, and medical contacts I had.
I would also make medical records more easily accessible. Unfortunately, I had to request a release for my medical records from each physician and for each appointment which was slow, inefficient and impedes the proper care of patients.
If you would like to share your story with us, we would be honored. Please contact us at advocacy@carium.com.
