By: Rachel Goossen, MD
Two years ago, I received an email from my close friend, Kerri, to let me know that her husband, Dave, had had a pontine hemorrhagic stroke and was in the ICU at a hospital in our hometown of San Jose. Other than a bad headache just minutes before, there were no warning signs for what would occur that evening. He was 39 years old and quite healthy. At the time, their son was only 2 and a half years old.
Today Dave and Kerri are working to piece together a new normal for their family. They have had more than their fair share of experience in navigating the healthcare system and interacting with physicians and other healthcare professionals in every imaginable setting and specialty. I invited them to share their insight into the patient experience in an interview.
Tell me about the night of the stroke and the days that followed. What events stand out to you?
Kerri: “When the paramedics arrived, at the bottom of the stairs I could hear a fireman in the bedroom saying ‘Oh this guy is 3 sheets to the wind, he’s a total alcoholic.’ I told him, ‘Excuse me, he’s not drunk, none of us have had anything to drink today.’ That was all really off-putting to me.”
Once we were in the hospital, they had a doctor Skype with me from Redwood City where Kaiser’s Stroke Center is. This guy talked to me to review Dave’s cat scan and he never once used the word ‘stroke.’ Then he hung up. Everyone else had been telling me my husband had had a stroke and I was so confused. I wondered, ‘why isn’t anyone speaking to me in a language I can understand?’
Dave: “I was taken to the emergency room at Kaiser Permanente in South San Jose. I believe I was [triaged…and] transferred to the neuro-ICU at Good Samaritan Hospital in Los Gatos. I believe I was there for 10 days and then moved into a “step down unit” for two or three days. During this time, I came out of my fentanyl haze and discovered my new deficits. Spastic Hemiplegia. I still don’t know if “hypertonia” or “hypertonicity” is correct. I slowly regained speech. This was initially quite challenging because I didn’t have any alternate means of communication available to me. Despite being affected on my nondominant side, I was too uncoordinated to write. Nor could I point out letters to spell things out, as I had quite a bit of double vision. I received my peg tube at this time.”
Kerri: “The ICU nurses were cool, but when they moved him from the ICU to the step-down unit, because he couldn’t speak, people thought he couldn’t understand what they were saying.”
Dave: “The overall bedside manner and professionalism of one or two RNs, and more than a few CNAs, was lacking. The most egregious example of this was two CNAs having a discussion only over me in the step-down unit, giving a rather grim prognosis (I cannot remember the specific language). Several could not help but interject their personal beliefs and faith, urging me to give over my life to Jesus, etc.”
Kerri: “We ended up putting up a sign that said ‘this patient cannot talk but he can understand you.’”
Dave: “From there, I entered inpatient rehab at the hospital’s Mission Oaks campus half a mile away. I suppose I had already begun receiving therapy, but here it began in earnest. Physical therapy, occupational therapy, speech, and dysphagia. I began walking again (with a quad cane and ankle-foot orthotic). My speech and sight begin improving. I moved from peg tube feeding to puréed food to chopped food. I only recall one swallow test, wherein I was fed a number of things with barium. Cheerios with barium milk? Not so bad. Turkey on white bread with barium mayonnaise? Terrible.”
Kerri: “The biggest problem I had was that even though they were explaining to me what was happening at the moment, no one was telling me what I needed to do next. The social worker did nothing. People would ask, ‘Oh did you call social security?’ and I thought, “I didn’t know I was supposed to do that.”
Dave: “After approximately six weeks, I was released. I received rehab in the home through a program called Rehab Without Walls. My walking (gait/endurance) and standing (“sit-to-stand” and endurance) was greatly improved during this time, and I moved from a quad cane to a single point cane. I had quite a bit of shoulder pain, but we made good improvement passively ranging my arm above my head. External rotation of the elbow was extremely limited, but we made gains here. My speech improved, as did my dysphagia. Thin liquids remained the most challenging obstacle, particularly thin spicy liquids, such as Pho with my typically liberal amount of Sriracha.”
Kerri: “They had to do a home visit before he could come home, so a physical therapist and his intern came to our house, measured the height of the bed, and told us to get rid of area rugs. Then they gave me this list of all these things I was going to need to get, then sent him home within 48 hours. So when he got home that first day there were 13 Amazon boxes with all these things that I had to assemble.
I was supposed to have a day of training to learn how to help Dave move around our home–how to care for him and help him care for himself. Then, the day they were releasing him, these auditors showed up and my training session got pushed aside. We just fell through the cracks.
I drove him home that first day and couldn’t get him out of the car when we got home. A neighbor saw us struggling and finally came to help.
That first 24 hours he was home I almost brought him back. I thought “I can’t do this.” He fell 3 times in the first day he was home. “
Had you ever heard of a hemorrhagic stroke before you had one? What was it like to comprehend the medicine behind your stroke and the ways your providers were caring for you? Was there anything they did that was particularly helpful? Unhelpful?
Dave: “I was aware that strokes could be due to a clot or a bleed, so yes. I did not know the term “ischemic” until now. I had understood strokes to be largely a concern for the elderly – I was surprised to encounter as many young stroke survivors as I did. I became quite interested in the world of therapy during my recovery – I feel I have an above average understanding of the concepts and methodologies, and a good grasp of the language.”
Kerri: “There was that first night at Good Sam they did give me a packet of information that was like, “So You Had a Stroke.” I loved that. That empowered me. I now knew what had happened to Dave and could take the words I had read and explain it to other people. It made me feel like I had some control, I had information that I could share. Handouts, packets, pamphlets whatever—the more information you can get into the hands of the family, the better.”
You have had more than your share of interactions with physicians in the past couple of years. Are there any that stand out as especially good or terrible?
Dave: “Apparently, when I first went to the emergency room, my wife said “psoriasis”, but someone wrote down “cirrhosis.” This little mix-up caused undue scrutiny, with me receiving ultrasounds of my liver and no small amount of blood work.”
Kerri: “At the hospital, they kept telling us we needed to find a primary care physician. I called an office that was near our house and made an appointment. At our appointment, the doctor was like, “Why are you here to see me?” If I come in and say “here’s my 39-year-old husband, he had a hemorrhagic stroke and we still don’t know why–you’re the medical person! Let’s figure it out!
It seemed like nobody wanted to take initiative. Everyone was just like, “well why are you here?” Until we got the right physiatrist and he was amazing. A social worker from Rehab Without Walls got us connected with our physiatrist and the provider that ended up being Dave’s PCP. She also sent a neuropsych therapist who came in once every three weeks and met with me and Dave. That was tremendous.”
When you reflect on the full course of your health care leading up to your stroke, the stroke itself and the care following the event, is there anything you wish had been done differently by your healthcare team? How could your team have done better?
Dave: “I am having an MRI done shortly that will help determine if the hemorrhage was due to some malformation of the blood vessels. I understand that stress and drinking and a sedentary lifestyle were likely factors. As such, I wish that I had done what I could to curtail these before they possibly contributed. As to whether or not my doctor could have identified/mitigated those risks, I am doubtful.”
Kerri: “When somebody is released who still obviously needs help, have someone at the home who is trained and prepared. We should have had a nurse or someone from rehab here when he got home to help me. None of this was a concern to anybody else. “
With your breadth of recent experience in the American healthcare system, what area do you see as the most in need of reform? What advice can you give to primary care providers in offering compassionate care to patients who have been through experiences such as yours?
Dave: “What immediately comes to mind is not the domain of doctors as much as it could be for hospital administration or social workers. Someone who could have held my wife’s hand through the bureaucracy of the disability process. Someone who could have warned me that a law firm would come calling to “help” with the initial federal disability claim – something I could have done myself. I misunderstood that their services were optional, and thereby lost a few thousand dollars in benefits.”
Kerri: “I felt like there should have been a checklist for what I needed to do. We got a letter in the mail from state disability saying that because we did not send in some form that they sent us, they are assuming he is all better and they are not going to send us any more money. We went without any income at all for about 6 months. There was just nobody helping us. It was all kind of winging it.
The whole thing just seemed so surreal, especially at the beginning. I cannot believe my 39-year-old husband had a stroke. I showed up at the hospital the night he went with a change of clothes and a pair of shoes because I thought he was coming home that night.
You have to remember that for a patient, this is not stuff they know about. I know you […] see this stuff every day, but we don’t.”
Rachel Goossen, MD, is a second-year resident practicing at the Sugar House Family Medicine Clinic. Rachel’s medical interests include sports medicine and musculoskeletal health, preventive health care, child and adolescent health, medical ethics, and clinical research. In her free time, Rachel enjoys outdoor adventures, cooking, acoustic guitar and spending time with her husband and twin daughters.