I am one of the twenty-five percent of people with a PFO (Patent Foramen Ovale), which is a hole between the upper chambers of the heart. It almost killed me.
I was admitted to the local community hospital with very low blood values in January 2020. Days later, after numerous tests, I was diagnosed with a rare form of Leukemia called APML (Acute Promyelocytic Leukemia). The local hospital couldn’t treat me, so I was shipped up to Boston, where they could stabilize me and support the injected Arsenic part of my ATRA/Arsenic treatment. The first days were chaotic and culminated with waking early one morning, going to the bathroom, and noticing my mouth had dipped. I tried to say something but couldn’t get the words out. I then walked out of the bathroom, sat on my bed, and called the nurse. She came in, and we started to talk, and although she was calm, I knew something was really wrong by the way she looked at me. I was stuttering and trying to say the words in my head. She had me lie down, and the Resident rushed in with my normal day-time nurse, who had just arrived at work. They took a look, and then the unit alarm was raised. The day became a whirlwind of neuro tests, a CT Scan, and then a head MRI. The on-call doctor told me she wasn’t sure what it was but that it looked like a TIA (Transient Ischemic Attack). The first MRI that came back was inconclusive. I met with one of the attending Oncologists, who told me I could be in deep trouble, but they’re doing their best. I had another scan a day or two later, and they confirmed it had been an Ischemic Stroke. My Leukemia was the obvious culprit, but they wanted to look further. A day or two later, I started stuttering while receiving some blood. I was unhooked and monitored with no further event occurring. A day or two later, a PFO was discovered by an Echocardiogram. The belief was that a clot formed in my leg and traveled through the PFO to my brain, where it caused the stroke. My care team put me on a 24/7 Heparin IV anti-coagulant and remote monitoring until my blood values were somewhat normalized and I was discharged to outpatient. This meant having at least one IV in me all the time and then two during infusions until my port was installed. This also meant no showers for weeks, which probably contributed to a later infection that involved an I&D in resolving. You really don’t want an I&D while having Leukemia, and you definitely don’t want to be a smelly one in the hospital. The good news is the lip droop and speech issues resolved quickly, leaving only subtle tells when I’m tired. The first real shower was heaven.
A Cancer diagnosis is rough, but this was a shit-storm. I felt very out of control of my own body, and the discussion with the Dr. on the fact I could die soon if they couldn’t figure out what caused the stroke was not exactly good for my mental health. Your mind goes defensive, and you start living moment to moment. I tell people that it is not a toughness that you develop when dealing with something like this but an acceptance that there is no other option. You do what you must because you want to live—simple right (not!). I thank God, awesome inpatient nurses, and a brilliant group of doctors on my care team for getting me out of it. I thank pharmaceutical science, the nurses, the hospital social worker, the psychologist, and my friends and family for helping me mentally get through it.
The treatment to minimize the chance of a PFO causing a TIA or stroke for me after treatment is anticoagulant medication and making sure that anything injected into my arm or port is filtered. Anti-coagulants are not a problem, but injection filtering is because of awareness. PFO’s are common, and most people never have any issues, so providers tend not to worry about them. The problem with me is I am a small percentage of a small percentage (rare cancer, rare negative PFO outcome). My experience is a PFO warning may not flow through to where it is necessary. Most medical record systems (your medical chart) don’t have sufficient warnings, or the hospital hasn’t enabled them. Likewise, existing systems within a hospital system or people within a hospital department may not communicate well. This means you’ll have to be on the ball to warn anybody injecting anything into you and make good-trouble to make sure your chart and possibly the system are updated with PFO information. Do not get bullied into accepting a needless risk. Filtering is not a new thing, and it’s a basic nursing skill for anybody that injects anything. Do not get a CT scan with contrast (contrast can’t be filtered) if your Dr. doesn’t need contrast. If they do, they should discuss the risks with you.
There is no way to determine if you have a PFO unless the Drs are explicitly testing for it, it is an incidental finding, or, like me, you win the wrong lottery twice. What you can do, once you know, is stay on top of it. Create good-trouble to advocate for yourself in any doctor’s office. I’m currently working on finding something like a wristband or maybe even a tattoo to inform any EMTs if, for some reason, I’m unable to advocate for myself.
I’m currently in remission, and things are getting much better. My care team is working on a plan for the future. It could involve a PFO repair procedure or none, depending on what the determined risk is. The stroke and PFO will always be on my mind at doctor visits, but that’s a good thing. It keeps me on the ball.
Links on PFO:
Note- I’m not a doctor or expert, but I’ve been a patient and a medical IT analyst. None of this should be construed as medical advice, and I’m not legally accountable for what you do with it. The goal is to offer suggestions based on my experience as an APML, Stroke, and PFO patient. If you are a patient and think there is something valuable that will help others, please contact me, and I’ll add it.