Surfacing After Silence

Life. After.

One year ago today

Me. Lily. Bonded for Life.

One year ago today, my parents were driving me home from the hospital in St Louis where the day before I had an Implantable Cardioverter Defibrillator implanted beneath my left collarbone, with a lead going into the right ventricle of my heart.  On the two-hour trip home, I had to ask my dad to pull over twice so I could dry heave on the side of the highway (those IV antibiotics were a bitch), clutching both hands to my chest, terrified I was going to open the wound or jar the ICD out of place.  But we made it home in one piece, with Lily, my ICD, still in place.

I have mixed feelings about Lily.  I am thankful she’s there, for she (most of the time) quells my anxiety.  She won’t prevent a cardiac event, but she’s my protection in case a cardiac event occurs, ready and waiting 24/7 to jolt things–literally–back into a nice sinus rhythm (hopefully).  I don’t mind the scar.  It’s almost invisible now.  I find it annoying to show security officials my card and explain why I can’t walk through security gates and why they can’t pass that wand over my chest.  It’s been a pain in the past couple months since I can’t have an MRI, which the doctors would have preferred to have as an additional diagnostic tool in the case of my knee.  And sometimes, when I’m walking around, the realization that I have a chunk of metal in my chest and a wire threaded into my heart is just damn weird.  But most of the time, I’m thankful.  And at least a couple of times a day, I find myself tracing the outline of the defibrillator with the fingers of my right hand, and a feeling of reassurance swells up within me.

The past year has resulted in a lot of lifestyle changes, and I’ve been somewhat anal about following my doctor’s orders and avoiding every known trigger that could set off an arrhythmia.  In the beginning of the year, I was pretty positive and got on the “let’s spread the word about heart disease” kick.  It took until this past spring for the effects of all that my cardiac diagnosis entails to hit me emotionally.  And when they did, they hit me hard.  I’ve gone through phases of relief, anger, thankfulness, confusion, bitterness, rage, grief, and sadness.  Followed by more grief and sadness.  And I struggled with the feeling of being broken.  All of these feelings coexist within me still, and I suspect they always will, and that certain ones will surface depending on what situation I am in.  But thankfulness and relief at knowing what is wrong are the strongest two emotions.

People thought my cardiac symptoms were just a result of the eating disorder.  I’m not sure how many doctors told me if that if I weren’t anorexic, my heart would be fine.  I had four cardiologists tell me that.  They did an EKG and wrote my symptoms off as a result of my eating disorder, not bothering to check for any underlying diseases, even after I had a Sudden Cardiac Arrest and went into asystole for 53 seconds.  “She’s just an anorexic” was what I heard that night in the ER.  My gut told me that something else was wrong, but I couldn’t get anyone to believe me.

And then I recovered from my eating disorder.  I still had cardiac symptoms.  One cardiologist listened to me, did some minimal testing and threw a couple of pills my way and pronounced me healthy.  I moved to MO for my PhD program, got mono and strep and the cardiac symptoms flared up in frequency and severity and I became an expert at fainting and blacking out, learning the sensations right before I faint and learning to fall away from tables and chairs and doorframes.  One cardiologist told me, after asking extensive questions about my history of anorexia, that I “shouldn’t be fainting” when I felt the weird heartbeats.  Completely ignoring the fact that I was fainting while feeling those weird heartbeats.

So off to St Louis I went, and found an amazing cardiologist who hardly glanced at my anorexic history, content with my answer that I was recovered and had been recovered and healthy for some time, and took my complaints seriously and investigated the cause.  One look at my EKG and my history told him what it was, and an MRI confirmed it, and now I have a new acronym on my MedicAlert tag: ARVD (Arrhythmogenic Right Ventricular Dysplasia), a genetic form of progressive, irreversible and untreatable cardiomyopathy.  I also have two structural abnormalities that may be getting worse as the ARVD progresses.  My doctor was honest in telling me that a heart transplant may be in my future, and that even if I don’t have a heart transplant, I may need a valve replacement and/or a patch for the hole between my two atriums.

I wonder what would have happened if the first cardiologist, way back when, believed me, and didn’t write me off as “just another anorexic” or “just another psych patient”?  I have no doubt that my eating disorder behaviors aggravated the ARVD, but I would have developed it even without the anorexia.  The signs were there before I was anorexic, but at that time I was a healthy, all-star athlete.  What could possibly be wrong?  (Answer: A lot of things that often go undiagnosed until autopsy.)  What if, after my SCA, the ER doctors had sent me to the cardiac unit and ordered all the tests they would have if I had been a 60-year-old male?  What if they hadn’t sent me home the next day with a reprimand for being anorexic and a command to drink more water?

Obviously, I can’t answer those “what if” questions.  No one can.  Maybe they would have found the ARVD.  Maybe not.  It’s rather rare, and usually takes someone who specializes in it to actually find it.  I’ve given up on the anger and bitterness at not being listened to in my personal case.  I have a right to be angry, but holding onto that anger won’t get me anywhere.  But I am angry that I’m not an isolated case.  That medical professionals seem to have this disregard for psychiatric patients in general, and eating disorder patients specifically.  There’s this general idea that if you have an eating disorder, that is the root of everything else, and that all you need to do is stop restricting or stop purging or stop over-exercising and you’ll be fine.

A) That idea, that all you have to do is get better and you’ll be fine, is so dangerous.  For one thing, it shames the patient a patient who already has a great deal of shame.  For another thing, not everything is caused by the eating disorder, and serious and life-threatening illnesses may be overlooked all because “she’s just another anorexic”.

B) So what if the problem is caused by the eating disorder?  People with eating disorders are known to have heart problems, a lot of which will go away once the individual is healthy.  But in the meantime, is it wise to ignore the problem and just wait for the patient to recover from the eating disorder?  Shouldn’t we treat the problem as much as we can, now, while the patient is alive?  Or is it better to mourn the individual’s death and say, “If only she hadn’t been sick, her heart would have been fine”?

I’m not saying that we shouldn’t encourage the individual to recover from his or her eating disorder.  Of course we should.  But we should also do everything to help him or her with dignity and respect.  Shame and derision have no place in the treatment of human beings, but that seems to be the status quo of too many medial professionals.

If you know, deep down, that something is wrong, and someone tells you that it’s all in your head or it’s just because of your eating disorder, don’t listen to them.  Listen to your body.  Seek another opinion.  Keep knocking on doors until someone believes you and is willing to listen.  Your life is worth it.


July 16, 2010 - Posted by | Communication, death, Eating Disorders, health, heart | , , , , , , , , , , , ,


  1. One year ago today…

    I found your entry interesting do I’ve added a Trackback to it on my weblog :)…

    Trackback by Mental Disorders 101 | July 16, 2010 | Reply

  2. One word: Amazing ❤

    Comment by Juli | July 16, 2010 | Reply

  3. Who knows what would be different today if doctors had found the problems sooner… I just know that I am glad you are still alive today.
    You made a lot of good points. Although I don’t have any medical problems that I know of, I am also tired of people dismissing me by blaming the eating disorder. I am a real person, and not all my feelings/moods/reactions are eating disorder related. I’m not a saint underneath an eating disorder. Just a normal person.
    I am also tired of hearing the “it’s your own fault” attitude that a lot of health professionals have towards people suffering with eating disorders. Sorry, but this is suffering, people! I don’t engage in behaviors because they’re fun, or I’m vain, or spoiled, or attention-seeking. Grar! What’s worse is that attitude keeps them from taking my disease seriously too! This is a deadly disease! Yes, I need to get a full metabolic panel done even though I am 22 years old, and normal weight, and otherwise healthy seeming. And yes, it’s important to see a specialist about the psychotropic drugs i take. It’s not a game to me, it’s my life!
    You go sister! I love you and love reading your work!

    Comment by wednesday v | July 17, 2010 | Reply

  4. I didn’t go through anything near as intense as you did and i can’t imagine going through it all but it reminds me of this past yr when i kept telling everyone that something wasnt right. i kept begging ppl to help me until it got to the pt on the roof….and finally 10 months later, it was discovered that the prozac had been severely negatively effecting me. now that i’m off it, i feel so different. it’s amazing. but you are so right about trusting your instincts and knowing your body because i knew something was off.

    Comment by shira | July 18, 2010 | Reply

  5. Im thankful that when I was actively engaging in behaviors, I had people who were more knowledgeable about the “system”, and advised me not to tell doctors in the ER’s about the eating disorder. When I didnt tell them, they would actually run tests to see what was wrong-if I mentioned the eating disorder, they would give me IVs of water and tell me to see a psychiatrist.
    Thankful you’re alive, Lex. And hope surgery went well today. Thinking of you.

    Comment by Mindy | July 20, 2010 | Reply

  6. the medical world really pisses me off sometimes. how DARE they, i tend to think.

    having said that: it is an undeniable sign of strenght to not let that anger consume you. wow.

    but THANK GOD you found that cardiologist before it was, well, you know. kinda want to thank him (her?–can’t remember at the moment) personally. but really, it is you i should thank. for hanging on and not backing down and saying fuck you to those who dismissed you. and for sticking around for all the people who love you.

    thanks, lexie!

    Comment by slzu | July 21, 2010 | Reply

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