3 years ago today I got a phone call. I was at work when my phone vibrated in my pocket. I took a quick peek at my phone – Blocked Number – That only happened when the hospital called. Why were they calling? Most likely they wanted to reschedule and appointment. I had seen my psychiatrist a few days before hand and had an ECG, but this was the furthest from my mind until I heard my psychiatrist on the other end of the phone instead of the secretary, who I expected. I went into the basement of the computer store, into our warehouse to get some privacy while taking my call. “Claire, we’ve had an issue with your ECG”, often this type of news isn’t given over the phone but living an hour away from the doctor he told me over the phone. The results of my ECG showed that my heart was struggling under the symptoms of my eating disorder, but what did this mean? I sat down on a stack of monitors and started having trouble breathing. “What do you mean my heart is struggling?”, “I want you to go to your doctor and tell her that you need to have weekly ECGs and be monitored very closely”. At this point I was stunned – weekly ECGs sounded serious, but part of me didn’t believe that anything was wrong, surely there must be some mistake. If I told my doctor flat out that I needed weekly ECGs she would get pretty defensive as most doctors do when you tell them what you need; I needed something more to tell her and I needed more answers. I pleaded with Dr. S to give me more information, what did the ECG show, what was wrong? “It looks like you have had a heart attack, most likely in your sleep. This is very serious and I need you to go to your doctor as soon as possible”. That’s when the tears started.
A heart attack or cardiac event is the leading cause of death in patients with eating disorders. It happens suddenly and with no warning. Often times they call it “spontaneous cardiac death”, for some reason the word “spontaneous” really drives this home for me – all of a sudden, out of nowhere, anyone suffering with an eating disorder can die because their heart ceased to function due to lack of muscle tone, electrolyte imbalances and irregular electrical signals or extreme malnutrition, stress and strain on the body.
I was sent a copy of my ECG and showed it to my doctor. She ordered another ECG, blood tests and referred me to a cardiologist who saw me the following week. A few days before the appointment I was given a Holter monitor to wear that monitored my heart function. At the appointment I was given an Echo (ultrasound of the heart), Stress Test (ECG while on a treadmill), a Tilt Test and some sort of breathing test. After hours of testing I sat in a small room with a desk, lots of pamphlets and posters – I was waiting for the cardiologist after the staff had reviewed all the tests of the day.
The Holter monitor showed that my pulse (ideally 60-100bpm) was a high of 50 beats per minute, often dipping into the mid 40s during the day and in the low 40s at night as I slept. I was given my first cardiac diagnosis – Bradycardia.
Blood pressure is ideally 120/80, mine was normally 90/50 and dropped to 80/45 when tilted to a laying position. I was given my second cardiac diagnosis – Hypotension.
The Echo showed that one of my heart walls was thinning – my body was being forced to eat itself for nourishment because I wouldn’t feed it. The thinning of this wall was dangerous – if it developed a hole, blood would flow between the chambers of my heart disrupting the rhythm of the heart, I would need emergency surgery and likely die.
After reviewing my other tests the doctor told me that my heart was very weak. The evidence of a cardiac event was present in my ECGs, the most recent ones showing that I had experienced at least 2 cardiac events in the recent past. I couldn’t remember feeling them so they most likely occurred while I was sleeping, or I dismissed the symptoms as the regular pains of being thin and undernourished. The thin wall of my heart, low pulse and blood pressure as well as low electrolyte levels placed my heart and my life in a very dangerous place and extremely close to death if I didn’t turn things around and fast.
The cardiologist gave me a prescription paper and scheduled an appointment to follow up and see how things were progressing the next week. He told me to drink electrolyte drinks, avoid any exertion and increase my food intake.
I was terrified – look what I had done to myself, I couldn’t believe that this was really happening to me. In retrospect I know the right thing to do would have been to tell Carson everything; to get a ride home and show my boss the cardiologist’s note saying that I couldn’t work my retail job anymore. I should have gotten the medication and done everything I could to protect my heart – the silly little organ that stood as the sentry between life and death.
I didn’t do any of these things. After the appointment I continued on with my regular life; I walked to the bus and went to work, stood for 8 hours a day and lifted boxes in the warehouse. I put the prescription sheet and note to be off of work in my purse and forgot about them, I told Carson that the appointment went well and I just had to keep an eye on everything, I ignored the missed calls from the cardiologist as the date of my follow up appointment came and passed. I convinced myself that it was all impossible, that everyone was overreacting – I was invincible. The 2 things I did do right was to try to stop purging and increase my intake but this caused it’s own problems.
The more I ate, the more I purged. I fought as hard as I knew how to increase my intake but my eating disorder was relentless; I thought that I could control my eating disorder, that I was in charge but I realized incredibly quickly that as much as my eating disorder was my friend, moral compass and safe place, it was going to kill me. I had absolutely no control, my symptoms continued even after I got the news that my heart could give out at any moment, and that any day I could simply not wake up again. I knew I needed help.
I wrote a letter to my treatment team, begging them to take me back into the program. This would be my second round of treatment; I wrote out reasons why this time would be different and how I would put steps in place to ensure my success this time. I told them I was desperate, I told them that I would really try and embrace the process. The following week I was re-admitted to the treatment program, went on medical leave from my job and found a room to rent an hour away from home that was near the hospital. I left my family, my friends and my life behind in order to get the help I needed to save my life.
3 years later thankfully, and miraculously, I am still alive. The memory of this whole ordeal haunts me as one of the scariest experiences of my disorder and shows me the extent to which the eating disorder will go to destroy it’s sufferers.