It’s fascinating how something can become so familiar we barely notice it until it is suddenly gone. Upon awakening from my heart surgery, the first thing I realized is the thumping in my chest was silent. At first I thought my heart must have slowed way down, even below its normal 50 beats per minute. So of course, I looked up at the monitor. Without my glasses or contacts, I couldn’t read the number, but my heart was definitely beating as evidenced by the squiggly line running rhythmically across the screen and no alarms sounding. If I concentrated, I could feel my heart moving softly within me.
Ever since I was a child, my heart has thumped hard. Not in the pounding way when we have anxiety or a sudden fright. I’ve had that too, but this is different. Mine would thump, thump, thump – sometimes fast, more often slow. Sometimes it would hurt, but I had been told it was “chest wall” pain from Fibromyalgia. I thought everyone felt their heart thumping, and that it was a sign of a good, strong heart. Now that my butterfly has been installed and the PFO closed, I know just how hard my heart has been working for most of my life.
The road leading up to this surgery has been ridiculously long. If you’ve read my book Peace with Pain, you know I’ve lived with chronic pain and illness for many years. One of my more troubling symptoms has been syncope, feeling like I’m about to pass out, and is one not related to my primary diagnosis of Fibromyalgia, or to any of the conditions on the list from the multitude of doctors I’ve seen.
Nearly 20 years and at least 6 cardiologists later, I have a diagnosed that can actually be cured: platypnea orthodeoxia. This complicated sounding name describes something quite simple: Platypnea means shortness of breath that is relieved when lying down, and Orthodexia means a fall in arterial blood oxygen. So while the name is descriptive of the condition, I would suggest another one that is easier to pronounce: PFO Hypoxia. Many people are born with a PFO, which is a flap in the heart in between the atria, which separates the unoxygenated blood from the oxygenated blood. In an unknown amount of people, this flap opens and causes shunting of the unoxygenated blood to the left side of the heart, where it is then sent out to the body.
The symptoms I experienced whenever this flap would randomly open included feeling like my head was suddenly under water and a powerful wave of fatigue would make me feel like I was about to pass out. On days when I would have multiple episodes, I noticed I also had increased muscle cramps and weakness, confusion, and an intense headache that would correspond with the episodes.
My diagnosis was complicated by the fact I have low blood pressure. When the PFO was found 10 years ago, the cardiologist said it did not cause my symptoms even though the technician who did the bubble test and my common sense disagreed. Of course the doctor with extensive training would know more than a technician and more than me, so I accepted there was nothing else to do except eat more salt as the doctor prescribed to increase my blood pressure. Adding more salt to my diet helped, but over time the episodes grew increasingly intense and more frequent. I would check my blood pressure and be very confused when it was normal.
In 2015, the volunteers at Dharma Center talked me into a getting a smart phone so we could accept credit cards. One day while exploring the apps installed on the phone, I found the Samsung Health app with an oximeter. I played with it and forgot about it. Then when I had an episode, I remembered it and checked my oxygen level. The reading was 72. Normal is between 95 and 100. I thought the meter must be wrong.
At my next Rheumatologist appointment, I had an episode while waiting for her, so I used my phone to measure, and once again the reading was in the 70’s. When she came in, I asked her to humor me and let me use their office oximeter so I could see if the phone app was correct. She agreed, and I sat hooked up while we talked, with of course nothing happening. Until suddenly it did. While just sitting and talking, I started feeling woosy and my oxygen dropped down to 77, and a minute later it came back up to normal. She exclaimed, “That’s so weird!” I replied, “I know! Why is it doing that? My head felt like it was under water, but now it feels fine. This is what I’ve been telling you about for years!”
Thus began another odyssey of medical appointments and tests with cardiology and pulmonology…and once again I was told the PFO was not the problem. Of course my oxygen levels drop never dropped when I was with the cardiologist; the episodes were completely random. At the last appointment with a pulmonologist, he suggested I see a psychologist who could teach me some type of sleep deprivation method after I told him I had not slept through the night in 20 years. Needless to say, I gave up on doctors for a while.
I did buy a medical grade oximeter. While the phone app is useful, sometimes it would take 10 minutes to register a reading; my guess is it cannot accommodate the rapid changes. My previous life as a systems analyst kicked in, and I tried to find the pattern. I figured if the doctors couldn’t fix me, then I could stop doing whatever was triggering the oxygen drops. I started recording the oximeter with photos and videos in my smartphone in the hopes of tracking the pattern.
Late in 2017, I had 5 days of almost non-stop episodes. I was meeting with my holistic doctor during one of them, so she insisted I follow up with a specialist. She first recommended a neurologist, but he refused to see me for “random hypoxia” stating he had no idea what to do for that. The following month, she sent me to a cardiologist and said to make an appointment for bradycardia, since I also had a low heart rate, to make sure I got in the door this time.
On my way into his office, I had an episode in the elevator and waiting room. I recorded it with my phone. Then after an EKG, while waiting to see the doctor, it happened again. I recorded it once again. By this time, I felt pretty loopy. So when Dr. Azimi, the cardiologist, walked into the room and asked why I was there, I said, because of this, and I shoved the phone into his face.
The most amazing thing happened. He watched it. He listened to me. He asked questions.
(If you’ve been in the health care maze, you know how precious this is.)
With the oximeter still on my finger, he asked me stand up and walk around. I told him, “It doesn’t always do it. I can’t find the pattern…no matter what I’ve tried, I can’t make it happen. That’s why I made the videos.”
He asked to see more from my phone!
As I told him my history, I mentioned the PFO. He became excited, and said he knew what was wrong with me. I looked at him with disbelief. I had been brushed off countless time…this is a weird thing no one has…how could he possibly know?
He jumped up and ran across the hall, and brought back a booklet from a conference. “This is a paper I presented: The Consequential Inconsequential PFO.” He continued, “You have an atypical case, but I was going to test you for a PFO, and you say you know you already have one. You have platypnea orthodexia. I started treating people about 10 years ago, and it’s interesting you wound up in my office out of all the places you could have gone. I think it’s much more common than doctors believe, so I give talks on it at conferences.”
He went on to describe the treatment: He would go through the vein in my leg to place a device inside my heart to close the hole created by the PFO. At that point I wanted to run, but his excitement kept me there. He showed me a YouTube video of a prior patient. Her case was so extreme she needed an oxygen tank and couldn’t stand up without her oxygen levels dropping. Now she was completely cured.
I left excited, but by the next day I was worried and skeptical. So I did my research, eventually found another doctor who had heard of platypnea orthodexia – which was not easy – and I even got tested for the metals that comprised the PFO closure device. I have a nickel allergy, so Dr. Azimi contacted the manufacturer and got me a sample of the device so I could ensure I would not have a reaction to it. This was wonderful, since I got to touch and play with this thing that would be supporting my heart. It looks like a butterfly with its wings up, and is incredibly durable. With all of that complete, I finally agreed to the procedure.
Less than two weeks ago, I had my butterfly installed. So far, the big change, as I said above, is my heart is beating softer and not working so hard. The other major bonus is I’m sleeping better! I think I’ve slept more this past week than I have in 20 years!
When I asked Dr. Azimi if the surgery would fix my chronic pain issues, he said, “I don’t know about that…I only know about hearts.”
It’s too soon to tell, but I do feel a fundamental shift in my being for the better. I am deeply grateful for all of these experiences. I learned how easily we adapt when something is wrong within us, and how important it is to keep questioning. While in the chronic life we must take breaks from the search, it’s important to stay open. We never know when we’ll find something to make us more functional.
Thank you to all of you who offered prayers and healing thoughts during and after my surgery. It made a huge difference to feel such tremendous support. I am excited for this butterfly to soar!
Love to you all!
If you have unexplained episodes of syncope, check your oxygen levels!
Learn more about Platypnea Orthodeoxia from this video of one of my doctor’s other patients. (Sharp Health News is doing a story about me, but it’s not done yet; when it is, I will post is here.)
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