Polly Hunt Kentucky
The thought of stroke didn’t even cross my mind. I was, after all, a very active, healthy 29-year-old with no medical problems or risk factors.
July 21, 2001, began like any other summer Saturday. I awoke to feed my 13-month-old daughter while my husband and other three children slept. When my daughter, Hannah finished nursing and had fallen asleep, I returned her to her crib and went to the living room to enjoy the few minutes of peace and quiet before our usual busy day began. This was a luxury that did not often occur in my household with an infant; 3-year-old twin sons, Jake and Jared, and 9-year old son, Josh. Shortly after this, as I was enjoying reading, something aggravated my sinuses and I sneezed uncontrollably several times. From that moment forward, my life was forever changed.
Although I didn’t initially recognize it, I was having a stroke. Almost immediately, I experienced blurred vision and intense dizziness or vertigo. I also had a sudden, severe headache. It began on the left side of my skull right at the base and ran through to the right temple, and felt intensely hot. The only word I have ever been able to use to describe this pain was “searing” and it radiated from my skull into my cervical spine.
As I stood to walk to the kitchen to search for ibuprofen, the room felt as if it were tilting. I had to hold on to the furniture to keep from losing my balance. This scared me and I called out for my husband, David. At the time, I was an RN working in the Emergency Department at a local hospital. In that role, I was exposed to people with all kinds of unknown illnesses. I remember thinking that with this excruciating pain in the left occiput and into my neck, that I might have viral meningitis, as I had experienced cold symptoms for a couple of days.
When I began telling David my symptoms, he immediately insisted we go to the ED. While my cognition and language were normal, my speech was slightly slower and more deliberate. This was my first indication there might be more than a simple, viral illness; but, again as a young, healthy individual, I still wasn’t even considering the possibility of a stroke.
By the time we got dressed, waited for my mom to arrive to baby-sit, and drove 20 minutes to the Emergency Department, we arrived at the hospital about an hour after my symptoms began. I was triaged and taken to a bed where I was promptly evaluated by the RNs and physician on duty. As I expected, with my symptoms, especially the sudden, severe headache and neck pain, a lumbar puncture was performed to rule out meningitis. This and migraine were in the initial differential diagnosis.
The lumbar puncture showed numerous red blood cells, so a CT scan of my head was ordered to rule out subarachnoid hemorrhage. This was negative. However, the physician – who worked with me and knew me well – wasn’t convinced and ordered an MRI. At this small hospital on a weekend, MRI was normally not available and I would have had to wait until Monday. As it happens, though, this particular day, a tech had come in to perform a test as a favor to one of the local nephrologists. Because of this, I was able to have the MRI, which showed a moderate size ischemic stroke in my left cerebellum. The physician was as incredulous as I was when he came to tell me the result. Because ischemic stroke had not even been a consideration, by the time the actual diagnosis was made I was outside of the window for tPA.
By the time I was admitted, my symptoms had worsened to the point that was unable to walk without assistance due to left-sided ataxia, my fine motor ability in my left arm and hand was impaired, I had a slight facial droop, and my speech was very dysfluent. In addition, the headache and vertigo had worsened and I was vomiting. All in all, I was in the hospital seven days, had several diagnostic tests to determine the source of my stroke, was started on anticoagulation, and had multiple therapy sessions.
Initially, the only abnormal finding was a patent foramen ovale (PFO), which I later had repaired as part of a clinical trial. More than anything else from that time, I remember feeling extremely vulnerable and afraid. My week in the hospital was the beginning of an emotional roller coaster of sorts. I remember getting upset because I was scheduled for a cerebral angiogram and I wanted to shower and shave my legs first, but my sitting balance was so poor that I couldn’t do it myself. It is a humbling experience to have to ask someone else (my husband in this case) to do something this personal for you, especially when you are as independent as I am. The worst part of all of this was that my 13-month-old daughter was terrified of me. I can only assume this was due to the dysarthria. This was a child that a few days earlier was still breastfeeding and now she wouldn’t come near me.
I returned home with much help and support from family and friends. My mom and mother-in-law came to our home, day in and day out, so my husband could return to work and I could go to therapy. My sister, Leanne, took me for outpatient physical, occupational, and speech therapy daily for several months until I was able to drive again independently.
All in all, recovery was a lengthy, deliberate journey that involved both physical and emotional healing. I was fortunate to have recovered enough to be able to return to work four and a half months after my stroke. Thankfully, my supervisors continued to hold my job long after what the law requires and support my return while I was still continuing speech and physical therapy for several more months.
Emotionally, this was a time of turmoil. It was six months before I could carry my children safely. I learned to be thankful for the little things; I could still hold the kids as long as I was sitting; I could basically perform all of my own self care; and most importantly, I was getting better every day. To help improve my dysarthric speech, Jake and Jared would sit on my lap while I read book after book to them. I discovered that playing the piano, which I had always enjoyed but not really taken the time to do much in those years after the kids were born, helped improve my fine motor ability.
During that first year, I remember doing a lot of reflecting on things that had happened and decisions I had made in my life. I discovered I was truly content. My life was good. I had beautiful, happy, intelligent, healthy children, a loving family and supportive friends and coworkers. I had a good job in a profession I genuinely liked and was good at. This awareness led me to be much more appreciative of those “little things” I had been too busy to notice or just simply took for granted.
It has also led me to become more involved in stroke care than I ever would have thought. I had been an ED nurse for several years, had worked on a telemetry unit, and worked on then managed a rehab unit in another town. I realized my entire nursing career had involved me in various aspects of stroke care. As I did more and more research, I learned how great the need was for improvement in stroke systems. Many people don’t even know the signs and symptoms of stroke, let alone what to do if they experience them. The variability in the care at different hospitals was disturbing.
I am now the stroke program coordinator at a different hospital in my community. I have taken an active role in improving stroke care at this hospital for the past six years. We are a Joint Commission certified Primary Stroke Center and have reduced our door to needle (DTN) time every year since our JC certification. Our average DTN time is 39 minutes this year and 100 percent of eligible patients received the clot-busting drug, tPA, over the past 2½ years. I have seen stroke care evolve at this facility to the point that it is second nature for the team here to provide high quality care. I work with an exceptional medical director and team of physicians, nurses, technicians and therapists who provide excellent stroke care according to evidence-based guidelines. For the past three years, we have received the Get with the Guidelines-Stroke Gold Plus award and for the past two years, the Target: Stroke Honor Roll from the American Stroke Association. We have also received stroke care awards from other agencies including HealthGrades and CareMark. We use the latest ASA recommendation of the 4.5-hour window for IV tPA and we have advanced stroke resuscitation options, such as intra-arterial tPA and clot retrieval procedures available to patients who meet specific criteria. I am very proud of the care our team is able to give. One of the best parts of my role is being able to affect the lives of each patient experiencing stroke. While evidence-based care is essential to quality, so is the individual time and attention that each patient needs and deserves.
Until today, I have only shared this story with a few close friends, but never shared it so publicly. I must say it brings back the feelings of vulnerability I experienced immediately after my stroke. I watched the video of my oldest son’s 10th birthday, which was 10 days after my stroke, and the memories and feelings it evoked are hard to describe. I don’t often watch videos from this time for this reason. However, I have told many patients my story over the past 11 years. Sometimes a person just needs to talk to someone who has had a similar experience. Other times seeing someone who has overcome the obstacles and is doing well can help get you through the rough parts. All in all, if you met me for the first time today, you probably would never know that I have had a stroke. I still have some mild residual ataxia, which most people dismiss as clumsiness. I leave a nightlight on at night to help me compensate visually for my lack of proprioception. My speech is slower than it used to be and somewhat more deliberate, but again, if you didn’t know me before you wouldn’t notice. These symptoms worsen dramatically when I am very tired or ill and my close friends often notice this before I do. I tell patients to expect this because I remember how frightening it was the first time it happened to me.
I hope you can see that this was not a story about being a victim or one of just surviving, but one of physical and emotional recovery. It is also the story of learning to thrive by living each day with the knowledge of how quickly the simple abilities we take for granted can be taken away. It is the story of persevering with a thankful spirit, and a passion to make a difference for others in similar situations.
I will forever be indebted to my ex-husband, David, and our five children for their patience and support throughout my recovery even as it continued many years later; to our parents, our siblings, and the many friends who helped with caring for our children and our home, prayed for me, and transported me to and from the countless hours of therapy over those first few months. I am also very grateful to those caregivers who helped me on my path to recovery. They included Drs. Joseph Bajorek, David Bush, Jon Walz, Lee Haikal, Jason Yuan, and Larry Latson.
Even when bad things happen, they often lead you to a place in life you may not have found otherwise. I am truly blessed and I am definitely not a victim. It really bothers me when people describe stroke patients as victims. I am certainly a survivor, but even more than that I am thriving as a direct result of this stroke.