PFO (Patent Foramen Ovale) and Stroke Awareness

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:

American Heart Association- Patent Foramen Ovale (PFO)

Cleveland Clinic- Patent Foramen Ovale (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.

Day One APML (Acute Promyelocytic Leukemia) Diagnosis Tips For Patients

My first thought about writing about my APML (Acute Promyelocytic Leukemia) diagnosis is how difficult it is for people to deal with it when diagnosed.  APML is a rare but more treatable form of AML. Here is a list of the minute-one things you should know as a patient after your done spinning from receiving your diagnosis. Spinning is normal, just in case nobody told you that either!

Note-I’m not a doctor, psychologist, or expert but I’ve been a patient. None of this should be construde 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 patient. If you are a patient and think there is something valuable that will help others please do contact me and I’ll add it to the list.

  1. You’re alive and in a place that will help. That is everything. The first couple of weeks will be rough as the doctors and nurses sort out what you need and deal with the likely crisis that brought you to them. They know what they’re doing and will do their best to get you what you need. You can help them by giving them clear and accurate information on your health, doing what they say, and keeping yourself focused on the fact that you are still alive. You are here, and that’s what matters.
  2. The initial whirlwind is what you need to survive, and then your % of survival goes up tremendously. I often thought of Rocky going through a 100 round fight round-by-round. You will bruise, bleed, rage and cry but do not give up. You will learn how strong you are as you move along. Mentally you will adapt and accept things you were horrified with during initial treatment. Needles become nothing, and you’ll start identifying songs the MRIs play. Talk to somebody if you start getting sick of the pain of treatment or panic.
  3. The effects of medications are tough to learn. This is particularly true of any steroids you’re prescribed.  You will feel weird, different and it is hard to sort out what medication is doing to you versus a condition. Communicate with your doctors and nurses about this so they can let you know what they know and treat any wacky side-effects. Sometimes just knowing that a med impacts your anxiety, bowels, whatever is helpful. Fatigue and chemo-brain are real things. It’s ok to experience them, and you will work through it.
  4. Nurses provide care and know the important stuff about what it is like to be a patient until you talk to another patient. They’re not all perfect, but they all have wings, so don’t bust their chops. You will find at least one who will give you hope and the truth. I will remember my angels until I can’t.
  5. Your loved ones will help. Let them. This disease mucks with them too. It is number two on the list of why I hate cancer, and it will be high on your list too. If they’re having a hard time, the social worker can help, and talking to a counselor is a good thing. They need to rest and take care of themselves too. If possible, find a backup for them when they need to come off the front lines for a few.
  6. The dream of medical record interconnectivity never happened and never will. Make sure you are as forthcoming about your medical history and current medications and conditions as you can be. Don’t depend on a hospital system to be updated or connected with any other. Don’t even trust that their internal systems are connected. Make a list of your medications, keep it on your phone or even tack it to the board in your room. Give a copy to your advocate.
  7. You will need an advocate until you can advocate. Your significant other will likely be the choice, but if you must choose another, find a level-headed somebody who will go to bat and be the bad guy when necessary. Most hospitals and oncology clinics also have a social worker on staff, nurse navigators, and even a practitioner who can do a lot. They can do much to improve your quality of life as an inpatient and help your advocate do things like short-term disability paperwork and navigate billing.
  8. Write everything down in a notebook. There is no way you or your advocate will remember everything said or done given the circumstances. Write it down and retain it. Save any piece of paper and business cards you are given. Writing your goal blood values is a great start, so you have a good understanding of where you stand.
  9. Use any mobile application your hospital offers. They generally give you access to your blood tests and test reports quicker. They also track your appointments, medications, and all kinds of useful things.
  10. You will find other angels in the hospital, from inpatient to outpatient. Value them and treat them well. Housekeeping, cafeteria, parking, and even the transport folks can be particularly helpful when you are nice to them.
  11.  Social media and google are useful but use for informational purposes only. If you want facts, search for medical papers or websites of well-known cancer clinics or national cancer organizations. Everybody’s tale is different and valid. Do not assume your path will be the same, and always understand they’re dealing with the same bastard you are. Sometimes they’re expressing truth but sometimes fear. APML is rare, so online resources are scarce. APML is also a political party in Pakistan.  It’s a fascinating rabbit-hole to drop into for a few but not helpful in learning about your cancer.
  12. Your hospital stay will be for at least a month. I suggest a foam mattress cover and your own blanket (teddy bear skin suggested). Wear really soft sweatpants and shirts to avoid pressure wounds from lying down in bed. I got an infection due to a hospital stay pressure sore, and having an I&D while you have Leukemia is a pain-in-the-ass (literally for me).  Wear boxers if you’re not a boxer person to air things out. If your shower use is restricted and you’re hairy as a bear, you might consider a buzzcut and shaving the arms and chest to avoid medical-tape and bandage waxing. Think 40-Year Old Virgin waxing scene daily for months. If your skin tears, you can ask for gentler alternatives; they do exist. Your room will likely be desert-dry, so you will need something better than chapstick for your lips and drink as much water as you can. Think about doing stuff that will make you happy at the moment, from shows, podcasts, movies to books. Hospital TV and food are ok for a week or so, but you’ll soon be missing Flavortown unless it’s the only channel they have. This is more true if you are on neutropenic precautions. I found mixing and matching entrees and sides helps. Be creative with your time and what you eat. Believe me. You’ve now got the time to work on it!