Five Years of Gratitude: How My Patient Experience Led Me to the Center for Digital Health Innovation
At UCSF, we talk about being there for people on the worst day of their lives. I still can’t think about my worst day without getting a lump in my throat remembering the fear and struggle that I went through to get to the emergency room at Parnassus on March 1 five years ago, where I slid to the floor, breathless, exhausted, and alone before I could even reach check-in. It was the third time in several days that I could not stay on my feet from dizziness and shortness of breath.
The journey leading me to the emergency room was a long one. It took nine months for me, a fit runner, to go from peak shape to being unable to walk from my bed to the bathroom in my small apartment. I’d noticed that I was getting short of breath at the start of my workouts and would sometimes have to abandon them completely. A physical and blood tests showed healthy results. With no answers, I continued my training to the best of my ability and chalked it up to anxiety. But by five months later my breathing had worsened to a point that I had to quit running. I even had to rest walking up hills and stairs. Still, there were days that I felt fine, though I knew something besides anxiety was wrong.
My doctor at the time ordered a chest x-ray, which came back normal. Frustrated, I made an appointment with another doctor, who ordered a pulmonary function test. This showed a “minor blockage” but seemingly not enough to concern anyone. Meanwhile my pulse would race and my blood pressure, which I started taking multiple times a day, was very abnormal. I was ordered to wear a Holter monitor for 24 hours to record my heart activity while I continued to deteriorate. I sent numerous messages to the two doctors that I’d been seeing about my worsening symptoms to no avail. The first doctor never responded. The second said she’d try to get me a cardiology referral. I struggled along, trying to go to work and live my life, but it was clear to partner, my friends, my co-workers, and especially to me that I was rapidly getting worse.
I was making gallows humor jokes about what I planned to do to haunt my office if I died — think Harry Potter’s Moaning Myrtle — but I was getting more and more depressed and scared. My partner was reading everything he could to try to figure out what was going on, and I spent more hours on Google than anyone should. I cried — a lot. I would go to sleep afraid that I would not wake up. And I was embarrassed when I had to gasp for air while walking a single city block. The last of my worries during the final days of February 2017 was that I wouldn’t be able to run the Presidio 10 in April. My partner brushed my hair off my face as I stared despondently at another weird home blood pressure reading and told me that I would get better, that I would run that race.
It haunts me, and the people closest to me, that I didn’t go to the hospital sooner. I know now that I could have died at any moment. In hindsight, it is so obvious that I should have gone, yet test after test revealed nothing. I had imposter syndrome, as a patient. Was this all in my head? Why couldn’t anyone figure out what was wrong?
Around this time my partner found research on blood clots that sounded an awful lot like what I was experiencing. I fired off another message to my provider asking if this might be what I had, but she never answered. CDC reading informed me that 100,000 people die of blood clots annually, and that 1 in 4 people with a pulmonary embolism die without warning.
On March 1, I called my best friend to come over because I wanted to take a shower but was afraid that I might collapse in the tub. I started researching cardiologists online, and naively thought I found one who might be able to help. When I was told he wouldn’t be able to see me until May, I knew without a doubt that I would not live that long but I still wasn’t sure what to do. I contacted a telemedicine doctor from my computer for advice and told her I thought I might have a blood clot, even though I wasn’t experiencing all the symptoms (e.g. I didn’t have leg swelling or pain). She read all the messages that I’d sent to my doctor, listened to me, saw how pale I was, and asked me if I could get to an emergency room: she thought that I was right. And she told me to get my butt to UCSF, that they were the best, and that they would take care of me.
In a fog, I ordered an Uber. That driver had no idea he was driving a time bomb while I texted my partner, family, and friends that I was headed to the ER. As soon as I told someone at the hospital my name, I was rushed through — the telemedicine doctor had called ahead to say I was on my way. Blood tests, a chest x-ray, a CT scan, an ultrasound, an ECG, and a transthoracic echo revealed a scary picture: I had a “large burden of pulmonary emboli involving all lobes, which extend as centrally as the main left and right pulmonary arteries. Associated findings concerning for right heart strain, including flattening of the interventricular septum and dilation of the right atrium and ventricle.” In addition, I had a blood clot in one of my legs, and my liver and kidney function were impaired. Gotta love it that I can still find all of this in MyChart. (Someone told me much later in lay terms, “Your lungs were full of clots, your heart was blowing up like a balloon, and your organs were starting to shut down.”)
I spent my first night in the ER, uncomfortable, cold, hungry, thirsty, and hooked up to IVs and oxygen. My blood pressure was monitored. My temperature was monitored. My blood oxygen was monitored. My blood itself was monitored. I couldn’t sleep, I was scared, but I also felt relief for the first time in months. Finally, someone knew what was wrong with me. Someone knew what to do. And many people were working hard to help me. The compassion I was shown that night still blows me away. One nurse in particular just patted my arm and told me how sorry he was that I was going through this, that I was very young for what was happening. After feeling dismissed for months, I really needed to hear that.
The next morning, a doctor came to see me and discuss my options. I’m an empath, and his calmness just filled my spirit. “Don’t worry,” he told me. “Next year this will all be a story you tell at cocktail parties.” I held onto that promise for a long time, and toast March 2, the day that saved my life, every year.
Being wheeled away for a procedure was terrifying though. There’s nothing like a discussion of risks, benefits, and Do Not Resuscitate forms to make your mind race as you look up from your gurney. The lights, the sounds and bustle of the hospital, and seeing so many people go by in scrubs and surgical caps got to me. I thought I was being brave and stoic, but by the time I got to radiology, tears were sliding down my face and into my hair. The team made sure I was ok, but I kept reminding them to sedate me in a raspy little voice. I really did not want to feel it when they made an incision in my groin to insert catheters into my femoral vein to deliver heparin to both my left and right pulmonary arteries, all guided by ultrasound.
When I woke up in the ICU, my partner was there, where he stayed for nearly every minute of the next few days. I tried to sleep — I’d been awake for over 24 hours at this point apart from conscious sedation during the procedure — but headache pain, back pain, and the intervals of blood draws and vitals checks kept me from getting good rest. Plus, when you are hooked up to oxygen, an ECG, IVs for medicine and saline, and have catheters running from your groin to your heart, you can’t move enough to get comfortable. Trust me, I tried every hospital bed configuration possible. The pain got very bad late into the night. “Ten,” I croaked the pain level to the on-call nurse. “Ten.” Fortunately, I was not experiencing side effects from the heparin, but my body hurt so bad that I couldn’t even voice where it started or what type of pain it was. I closed my eyes and thought I was dying. I said goodbye to my partner in my head, how sorry I was that he would have to see it.
The next day, the catheters were removed which meant I could finally wiggle some of the muscle kinks out of my sore body. By evening, I was able to take tiny, tiny baby steps in the hallway using a walker. Two days later I’d improved enough to go home. And 49 days later, I did compete in that Presidio 10. My partner was there to cheer me on and take my picture when I crossed the finish line. I’ve never been prouder of a run.
I stayed in treatment with UCSF Hematology for a couple of years and have fully recovered and no longer need medication. My heart and lungs have no lasting damage. I am blessed and fortunate, and I still revel in simple gratitude with every run. Breathing, moving, and taking care of my health are beautiful things. I silently thank my entire care team every time I cross a finish line.
After I got out of the hospital, all I wanted to do was tell everyone how incredible UCSF is. If I was in Golden Gate Park or on the street in the Inner Sunset, I would point up the hill at the hospital and tell whoever I was with, “Look at the building! They saved my life in there! They are the BEST. If you ever need to go to the hospital, make sure you go there.” I scoured UCSF’s job boards for marketing positions, but none were the right fit as my background was in tech, not healthcare. Finally, in 2019 a job opened up at UCSF’s Center for Digital Health Innovation (CDHI) where my tech marketing and branding experience was an asset.
My patient journey showed me how different the care experience can be between different healthcare organizations. It also showed me how technology can help or hinder a patient’s experience. I still see red when I think how my first doctor didn’t answer when I messaged to see if it was possible that I had a blood clot. My message included my question, details about my worsening symptoms, and blood pressure readings. I had no way of knowing that I was experiencing an emergency situation at that point. Could that message have been monitored and triaged for immediate help? Could words like “blood clot,” “shortness of breath” or phrases concerning blood pressure and pulse numbers have triggered an alarm and gotten me help sooner? Would I have been less stressed in the hospital if I better understood my condition, knew what test was going to happen when, and what the results were without having to wait for a doctor? And now that I have regular tests for other conditions, how can I be better informed about, say, asthma, so that I can learn my triggers or figure out whether a certain type of inhaler or dosage really works for me? The team at CDHI looks at all of this and much, much more and I could not be happier to be able to share this important work with the world. (Shameless plug: we’re hiring more people who are passionate about improving healthcare through digital health.)
Special thanks to: Carmen, the ER nurse who first got me help and later comforted me, to Dr. Russ Cucina, who told me this would be a cocktail party story one day, to Dr. Hugh McGregor and Dr. Ryan Kohlbrenner who performed and supervised my procedure, respectively, to “Dr. Sensitive” in the ICU, whose name I never learned but was so incredibly kind (we nicknamed him for his warm eyes before I’d ever even heard of McDreamy on Grey’s Anatomy), to Matt, an ICU nurse who laughed at my jokes about puppy housetraining pads whenever I needed a bedpan, and to Dr. Andrew Leavitt, who explained so much to me, actively involved me in my treatment, and kept me on the road to recovery.
By Molly Hovorka, CDHI Marketing and Communications Lead
March is Blood Clot Awareness Month. The National Blood Clot Alliance shares these awareness tips and more symptom and prevention tips on their “Stop the Clot” website: