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Chest pain is what the patient says it is.

July 18, 2013

The subject of chest pain can be difficult in a medical setting.  Since chest pain of cardiac origin may indicate a life threatening situation, all chest pain is approached with a single minded determination to rule out cardiac first.  This is a great thing.  It helps us catch evolving cardiac events and minimize permanent damage.  The problem is that often this is where the diagnostic process stops.  If a patient is not having a life threatening cardiac event, they are sent home with a pat on the head and maybe a referral to a GI doctor.  There are lots of reasons your chest may hurt, some serious, some not.  We do people a grave disservice when we do not ensure that a doctor will work with them to find out just what the problem is.

One thing I’ve observed repeatedly is people sent home with no answers as to why they felt pain severe enough to bring them to an emergency room or a doctor’s office.  Sometimes people are even treated as though they cried “wolf” or at least made to feel that way.  This is quite unfair, as hospitals and doctors exist to determine what the health problem is.  The general public does not have the tools or the knowledge to safely distinguish between severe chest pain caused by a heart attack, aortic dissection, or pulmonary embolism and pain caused by less urgent issues such as heartburn, costochondritis, or fear.  Even doctors in hospitals with all kinds of sophisticated tests cannot always make an accurate diagnosis.  Why would we expect the lay public to do so?  Yet there are doctors that treat people quite poorly once they’ve determined there is no sexy, life threatening diagnosis to be had here.  Most doctors don’t behave this way, but there are enough that it causes real problems.  I’ve talked to many, many people (most of them women, which points to another ugly problem) who have encountered rude, uncaring doctors in emergency rooms.  They have been treated poorly enough that they make statements such as, “The only way I’m going to another emergency room is if I’m dying.”  The unfortunate part of this is it might be a self-fulfilling prophesy.  We can’t afford to alienate the public and cause them not to trust the health care system that is supposed to take care of them.

Another problem is when there is not an acute cardiac event such as a heart attack going on, but the patient is still experiencing pain of cardiac origin.  This happens often, and too many times the patient is sent home without a conversation with a cardiologist about how to treat it.  I know my former cardiologist would run from the building as soon as he knew I was not having “reversible ischemia”.  He didn’t care much for treating the non-reversible kind I guess.  The last hospitalization before I chose to move on to a different cardiologist, he refused to see me in the hospital after my stress test, though he had promised to do so.  He made no suggestions for medication adjustments and sent the hospitalist to my room to say, “It’s not your heart!” while I was suffering severe delayed chest pain from the exertion of the stress test.  I was sent home in more pain than when I arrived, which I had to treat the best I could with the meds at hand when I got home.

This brings us to a big issue.  Cardiac chest pain is not always an emergency, yet patients are given little advice on how to handle non-emergency angina pain.  We have to figure it out for ourselves for the most part.  Sure, most people get a bottle of nitroglycerin, but the standard advice is take it 3 times 5 minutes apart and if that has not gotten rid of the chest pain, call EMS.  That’s fine advice for many people, but is it really appropriate for those of us with chronic angina?  I learned about prophylactic use of nitroglycerin before exercise from other heart patients, not from my doctor.  I learned about common angina triggers from other patients, literature in the cardiologist’s office, and the internet.  While my doctor was still telling me pain triggered by anything besides exercise was probably not cardiac, I was reading about and discussing with many chronic angina patients triggers such as strong emotion, heavy meals, and fatigue.  If I ever tried to call the cardiologist’s office to ask a question about chest pain, I was directed to the emergency room.  Sure they can’t tell over the phone whether I am having another heart attack, but there has to be some kind of middle ground.  I knew my usual chest pain and I could make some determinations about how far beyond the pale a particular episode was.  My experience with going to the emergency room is it leads to yet another “chest pain, rule out MI” hospitalization and I get no help with adjusting my current meds.  The parting words from the hospitalist from the hospitalization I mentioned earlier were, “It hurts and there’s nothing we can do about it.”  Turned out not to be true when I sought help from another cardiologist.  This is why we are so hesitant to go to the hospital for help when we need it.

I have a friend who is recovering from her second open heart surgery in a year.  She does not have coronary artery disease (lesions within the large arteries of the heart).  Rather she had unroofing of a myocardial bridge which is surgery to uncover a coronary artery that travels through cardiac muscle tissue instead of sitting on top of it like it is supposed to.  This poor artery has been squeezed with every heart beat all her life.  This causes damage to the inside of the artery called endothelial dysfunction which makes the artery constrict inappropriately, cutting off blood supply to the part of her heart supplied by that artery.  This causes chest pain as her heart’s demand for oxygen surpasses the ability of this narrowed artery to supply it.  Imagine putting out a fire with a garden hose.  If it’s a little fire, that works fine.  But if you have a big fire, that little stream of water can’t keep up and the fire spreads.  You need a big fire hose, but that garden hose isn’t able to expand to be the fire hose it needs to be.  For those of us with endothelial dysfunction, we often exceed the ability of our compromised artery to supply blood and oxygen.  This causes cardiac pain, as this tissue is exquisitely sensitive to oxygen deprivation.  The ischemia (lack of blood circulation) often is not enough to trigger a change in the electrical activity of the heart so the EKG may appear normal.  My friend described being scoffed at by staff at her cardiac rehab when she explained she was reducing her activity because of chest pain.  A technician actually had the nerve to tell her she was not feeling pain, she was “having discomfort” and went on to say it was not caused by ischemia.  This person went on to accuse my friend of over-thinking her exercise, implying that she was sabotaging her own rehab.  This treatment is unacceptable.  I’m hoping my friend reported this to the supervisor or charge nurse.  The purpose of cardiac rehab is to teach people to listen to their body and safely stretch their ability to exercise.  It sounds to me like the technician needs further training.  Not everyone who goes to cardiac rehab has coronary artery disease, thus the treatment must be individualized to match the patient’s condition and diagnoses.

This brings me to the title of this piece:  chest pain is what the patient says it is.  If you hurt and it is in your chest, I think you know that you are hurting.  I think after all these years we all know where our chests are.  When I say my chest hurts, that is what I mean.  I am not diagnosing the pain.  I may have a good idea of the cause because I have lived with my aches and pains for a long time.  If I say I am experiencing pain, that is what it is.  Please have the respect to acknowledge that.

One Comment leave one →
  1. August 25, 2013 1:13 am

    Thank you for this post. It is very frustrating to experience chest pain tell a doctor or nurse about it, only to be told you are not having chest pain; discussion is closed and sent home with no explanation for the chest pain. Back at square one; and possibly with more chest pain triggered by the frustration of the aforementioned.

    The nurses at my cardiac rehab facility have rarely encountered anyone with endothelial dysfunction, they do know what it is, but don’t really understand it. There have been times where I exercise, experience chest pain and the EKG is normal which leads them to conclude I must be fine and not really having chest pain.

    I am not surprised that patients with endothelial dysfunction aren’t referred to cardiac rehab. For one, most of us with this condition have difficulty performing basic activities of daily living, let alone participate in a 3 times a week hour-long cardiac rehab program. Endothelial dysfunction for me is too unpredictable and inconsistent. When I exercise at rehab I feel relief when the session is over. Sometimes, I feel like I have “perform” and be “on” when I am there. They check my watts and mets and the nurses point out when my watts are less than my previous session.
    I simply explain I am exercising to tolerance and doing the best I can, based on how I feel. Lately the nurses are being understanding and supportive as they have seen (on days I am able) I give it my best, and on days that I am symptomatic I do the best I can; but I always try and have never missed a session. The nurses are learning to trust me and understand I know my body best. At first they couldn’t understand that I sometimes need a twenty minute warm up, but when they leave me alone and let me do my complete warm up they notice I am happier and more confident during exercise. Pushing me doesn’t work.
    My vessels need at least 15-20 minutes to warm up and that’s OK.
    I’ve always been active and an avid exerciser and have learned to listen to my body and heart.

    Please continue to bless us with your posts Caryl.

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