by Carolyn Thomas ♥ @HeartSisters
During my first evening attending our “Heart to Heart” 7-week education series for recently diagnosed heart patients, the man sitting next to me leaned over and asked me: “What are you in for?”
I told him that I’d had what doctors call the “widow maker” heart attack two weeks earlier, and that I now had a stainless steel stent implanted in a major coronary artery that had been 99% blocked. He interrupted me with a cheery:
“I have THREE stents!”
As he went on and on in exquisite detail about his cardiac event, I felt like my own was suddenly pretty puny by comparison. Three stents? How could I possibly compete with that? My previously-fascinating heart attack misdiagnosis story now seemed hardly even worth mentioning, really.
I came to observe during the following weeks and months that heart patients, consciously or not, seem to slot themselves arbitrarily into what I now call the unspoken Hierarchy of Heart Disease.
Herein I offer my very unofficial and highly subjective personal rankings in the Hierarchy. If any of these cardiology terms seem foreign to you, check out my patient-friendly, no-jargon glossary to translate confusing words and abbreviations. Please note that, in my opinion, there is NO SUCH THING as a “mild” cardiac diagnosis. Every cardiologist who tells a worried patient that there’s something wrong with their heart is delivering catastrophic news to that person and their family. So let’s jump in:
#1 Heart transplant is the undisputed winner in the heart disease sweepstakes. Anybody who’s survived a heart transplant (or is on the transplant waiting list) has experienced something so profound that – even among other organ transplant cases – there is simply no medical procedure to trump this one. If you ever meet a heart transplant survivor, do not under any circumstance mention a lesser medical condition you may have. Trust me, when there’s a heart transplant in the building, nobody cares about you.
#2 Coronary artery bypass graft surgery (CABG, or what we affectionately call “cabbage”). This is major open heart surgery, sometimes but not always under emergency conditions, may or may not be associated with heart attack. Extra points if your CABG was preceded by an actual heart attack. The procedure is similar to a detour on the highway when there’s a roadblock, except here blood vessels from elsewhere in the body are harvested to form new grafts in order to reroute the blood flow around blockages in coronary arteries. When it comes to CABG on our unofficial Hierarchy, more is better. Multi-vessel heart disease (affecting more than just one of the heart’s major arteries) is more often seen in men; women are more likely to have single-vessel disease.(1) Triple bypass tops double, quintuple beats quadruple. You get the picture.
And thanks to a suggestion from my longtime reader, Mary (see comments below), I’m also adding Dissecting Aortic Aneurysm to this category, especially since this sudden tear in the inner layer (lining) of the aortic wall is usually a very painful and very urgent event.
#3 Heart valve repair or replacement requires major surgery and, like CABG, usually means having your sternum cracked open like a chicken carcass to get to your heart’s faulty aortic, tricuspid or mitral valves. You earn extra points if you have more than one valve involved. For sheer novelty value and patient-centred focus, add an extra point if you’ve avoided the carcass-cracking by having minimally invasive or “keyhole” closed-chest surgery.
#4 Blocked plumbing means that a coronary artery is significantly blocked by a clot or ruptured plaque and may need to be opened up (“revascularized”) to restore blood flow to the affected heart muscle but not necessarily through major surgery like CABG, possibly preventing a myocardial infarction (heart attack) if you haven’t already had one by the time you make it to the hospital. Solutions can include invasive balloon angioplasty (inflating a tiny balloon inside the blocked artery to smoosh the plaque), or atherectomy (using a tiny Roto Rooter-type burr to grind the plaque into tiny bits), or a laser catheter (vaporizing the plaque).
Add one extra point if a stainless steel stent is implanted into the artery during an angioplasty procedure. But just as with CABG, the more stents, the higher your score. (The Journal of the American College of Cardiology has actually reported the extraordinary case of a 56-year-old patient with 67 implanted stents, a kind of full metal jacket on steroids and definitely the all-time winner in our Stent Sweepstakes!) Please give yourself two extra points if your stents were implanted because you were having a heart attack, or if your heart attack was due to a Spontaneous Coronary Artery Dissection (SCAD) which is a dangerous cause of heart attack usually seen in young, apparently healthy women with few if any cardiovascular risk factors.
#5 Arrhythmia means abnormal heartbeats, sometimes requiring an electrical correction of some sort, such as pacemakers, ICDs (implantable cardioverter defibrillators), cardiac ablation, cardioconversion, etc. Heart failure (formerly called congestive heart failure) is also sometimes treated with pacemakers or ICDs. Add extra points if the arrhythmia involves especially serious inherited heart abnormalities like Brugada syndrome or Long QT syndrome that usually affect young healthy adults, or if sudden cardiac arrest was your diagnosis. Deduct half a point if your benign arrhythmia is nicely managed with drugs alone.
#6 Functional malfunctions are potentially serious heart conditions like cardiomyopathy (possibly linked to viral infection) or endocarditis (infection of the heart lining or valves) or myocarditis (inflammation of the heart muscle) or pericarditis (inflammation of the outer membranes surrounding the heart). Congenital heart defects are those that babies are born with, and often lead to ongoing cardiac issues into adulthood. Heart failure (also mentioned above) is a terrible, awful, unnecessarily frightening name (that needs to be changed) of a fairly common condition that affects heart function if the heart becomes less able to efficiently pump oxygen-rich blood to the rest of the body. The most dangerous loss of heart function is sudden cardiac arrest. Quadruple points for that one.
#7 Drug therapy by itself without the need for any invasive cardiac procedure is used to manage some types of heart disease, like taking nitroglycerin for stable angina symptoms, and beta blockers, ACE inhibitors, calcium channel blockers, statins, blood-thinners or anti-platelet drugs for coronary artery or heart arrhythmia issues.
One of my heart sisters recently reminded me that I had neglected to add here the vasospasm condition called Prinzmetal’s Variant Angina to my Hierarchy. Double points if you have Prinzmetal’s, mostly because its spasm symptoms are debilitatingly painful, rarely diagnosed correctly, and seen most frequently in women. Ditto for Inoperable Coronary Microvascular Disease which affects the tiniest of our tiny coronary arteries – too small to stent or bypass, but a diagnosis that can be shockingly debilitating.
♥ Now if an actual heart attack (myocardial infarction) has preceded anything on this list, score an extra two points .
© Carolyn Thomas – Heart Sisters
(1) The Cleveland Clinic Cardiology Board Review. Lippincott Williams & Wilkins, 2012. Chapter 46, p 843.
♥
NOTE FROM CAROLYN: I wrote more about this Hierarchy in my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins Press) in Chapter 7 (the infamous chapter that the anonymous Johns Hopkins cardiologist who reviewed the manuscript before publication wanted to delete because it was “irrelevant to female heart patients”). You can find my book (with Chapter 7 untouched as written!) at bookstores (please support your local independent bookseller) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
♥
Q: Did I miss something on this hierarchy list? If so, where would you put it?
See also:
Oneupmanship: you think YOU have pain?
When Your Artery Tears: Spontaneous Coronary Artery Dissection
Is Sudden Cardiac Arrest the Same Thing As a Heart Attack?
When Doctors Use Words that Hurt
Young, Pregnant and a Deadly Heart Condition
Coronary Microvascular Disease: a “Trash Basket Diagnosis”?
Misdiagnosed: Women’s Coronary Microvascular and Spasm Pain
How Women Can Have Heart Attacks Without Any Blocked Arteries
My Love-Hate Relationship With My Little Black Box
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Heart Sisters 
I’m brand new here. I had an NSTEMI heart attack 3 weeks ago, followed quickly by catheterization and placement of one stent in circumflex artery for 99% blockage. After 6 days I developed pericarditis, which required a second hospitalization to rule out other blockages.
I know I’m a rookie, but I give myself extra points for having zero risk factors for heart disease. I’m 53, normal BMI, low blood pressure, low heart rate, low cholesterol, high good cholesterol, healthy diet, no family history. So yeah it was a total surprise!
Also can I get extra points for having been out of town at a work convention, a four hour flight away from home??
Thank you for this blog and community! I’m still in shock.
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Hi Martha – thanks for sharing your perspective here. Definitely you earn extra points!! You’re in very early days yet (three weeks!) so it will take a while for you to get your brain wrapped around what the heck just happened to you. I suspect the shock is far worse when you seem like the last person anybody would expect to develop heart disease. And being out of town when you’re very sick is the WORST!
I hope that wherever you were at the time, you were able to get diagnosed correctly and treated swiftly… Best of luck to you! PS You might enjoy reading these 4-part excerpts from Dr. Wayne Sotile on the four stages of heart attack recovery. Also, please tell me that you have been referred by your cardiologist for a supervised cardiac rehab program!
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Yes cardiac rehab will begin in two weeks, assuming the pericarditis is cleared up by then
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Fantastic – good luck to you!!
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I’m thrilled that you are re-running previous posts, because I didn’t find your blog until probably 2012 or so.
I won’t post my total score because, well…I wouldn’t want to brag. Right??? I did however, think of something that could be considered for extra points. I was sent home with a wearable cardioverter defibrillator (The Life Vest) that was to be worn for a minimum of 3 months due to an ejection fraction of 19.58. Knowing your heart was weak coupled with the fact that you are wearing the equivalent of what feels like a bomb should qualify for extra points.
I’m just sayin – LOL!
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Good point, Kim – so glad you added this one. Those who walk around with a life vest or implanted ICD often use that same ticking time bomb analogy. An interesting study investigated the anxiety associated with using such devices and found a surprising result: the spouses had as much (and in some cases even more) anxiety and worry than the heart patients did.
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Thanks for posting the “interesting study.” My husband did have issues sleeping beside the woman wearing the “BOMB”, but didn’t express them until months later. The person who instructed us on its use had warned him in the event of an impending treatment- “Do not touch her or you will be shocked as well.” We are sometimes so focused on the issues we are dealing with, we don’t realize the impact that it has on our loved ones.
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Wow…aortic valve replacement, single CABG and a mini-maze in one surgery; one year later, had a complicated ablation because the mini-maze failed. I’m not afraid to tell anyone “nap time!” Thanks for your wonderful and insightful (as always) post.
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Thank you Julaine! You got your money’s worth in that single surgery, but I’m sorry you had to have that follow up procedure the next year. I hope you enjoy a good nap today.
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Great column, though I question the deduction of points for a SCA (Sudden Cardiac Arrest). Mine involved being resuscitated 5 times, waking up 24 hours later in ICU (where I would stay for 2 weeks until I was stable enough to undergo an 8 hour ablation). Of all the crap since getting sick 3 years ago, this was (apart from the initial diagnosis and being given 6 months to live unless you have a heart transplant) the most harrowing…..
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Hi Cathy – I had to re-read this post to make sure I hadn’t actually deducted points for SCA (perish the thought – considering what a deadly cardiac event this can be!) Instead, as in both #5 and #6, sudden cardiac arrest gets extra points. A harrowing experience indeed! Best of luck to you…
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You missed endothelial dysfunction of the main 3 arteries. My microvascular blood vessels are fine but my main arteries crimp down with physical or emotional stress causing chest pain and shortness of breath. Treatment: time-release nitro. Found this out with a challenge cath at Stanford. I did not recover well after a STEMI LAD with emergency stent placed. With non-obstructive heart disease the macros and micros can malfunction, or just one or the other.
cMvd Coronary MACROvascular Dysfunction 😦
Are extra points given for having to go to 4 cardiologists to get a correct diagnosis?? How about 1/2 a point for traveling 600 miles to the closest hospital that does a challenge cath?
Everyone who is told their chest pain is just ‘anxiety’ should also get an extra point for insult to injury😖
Thanks for a great website!
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Stephanie! I’m arbitrarily (because I can) awarding you multiple bonus points for bringing up the important issue of the considerable hardship endured by so many heart patients even before being appropriately diagnosed – including days/weeks/months and sometimes even years struggling for an accurate diagnosis, or for not having the good fortune to live in a large urban centre served by a state-of-the-art cardiac diagnostic and treatment facility.
And don’t even get me started on an “anxiety” misdiagnosis . . .
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I have 12 stents in 4 arteries over 8 years. God bless them! The last time, I had an NSTEMI (vs. a STEMI). Carolyn, it would be good if you could explain the difference between these two kinds of heart attack. Also, I would think there would definitely be a hierarchy between these two.
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You are the stent queen, Pauline! There is indeed a physiological difference between NSTEMI and STEMI heart attacks, although – as I wrote here – there’s really no such thing as a “small” heart attack!
Briefly, the seriousness of any heart attack is generally judged by the amount of heart muscle that is permanently damaged by a sudden lack of blood flow to that muscle. STEMI means an ST-segment elevation myocardial infarction in which a major coronary artery is completely blocked and part of the heart muscle is left without an oxygenated blood supply. “ST segment elevation” refers to a heart rate pattern that shows up on an electrocardiogram (EKG).
NSTEMI (Non-ST segment elevation myocardial infarction) does not show a change in this specific ST segment elevation on an EKG, and results in less damage to the patient’s heart muscle.
The location of the blockage, the length of time that blood flow is blocked, and the amount of heart muscle damage that occurs all determine the type of heart attack. More good info on this difference here.
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Carolyn, your hierarchy is great! I’d love to pull it out the next time someone starts to tell me his/her horror story 😉
My #6 ended my career in 1998, when I was 46, and has been a greater or smaller problem at different times since then. Of course, #7 has been continuous, though varied, especially during hospitalizations and upon discharges, when cardiologists who hadn’t known me long term didn’t think my usual meds could be left without some tinkering (which my usual cardiologist had to correct when I subsequently got into trouble).
My first #3 was 15 years ago. While I appreciate the “wow” value of keyhole surgery, I’m not sure it deserves an extra point since recovery is so much easier than for those of us who had our sternums sliced open from top to bottom. My second #3 was 4 years ago. I appeal for an extra point here, because being certain I will eventually need a pacemaker, my surgeon threaded pacemaker wiring through my then-new artificial tricuspid valve so that I won’t need my sternum opened a third time in the future.
I may have created a new category when I had large clots on both of my artificial valves. Perhaps it could be Rare Life-Threatening Cardiac Events.
Thanks for reposting these great columns.
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I now feel an urge to amend this post to add “Whenever you’re around Jennifer, do not under any circumstance mention a lesser medical condition you may have…” !! I can just picture your inner eye rolling while you listen politely to others’ horror stories (stuffy nose? hangnail? blister from new shoes?)
Your appeal for extra points for your second #3 is hereby granted. Thanks so much, Jennifer!
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I loved the hierarchy of heart disease blog post. It seems that whenever heart patients are together, a sort of competition breaks out as to the severity of each person’s heart ailments. A whole lot of one-upmanship breaks out. It can get sort of ridiculous listening to it all.
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Isn’t that the truth, Sharen? I wrote this tongue-in-cheek – except so often I’ve met heart patients who, as you say, do actually seem to try to outdo each other in the awfulness of their experiences. And it’s not a competition!!! I wrote more about “one-upmanship” a couple of months ago…
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So…I told them I was sick! Now I can give my Hierarchy numbers…I’m a 3 plus a 5 and a 6! Mitral valve repair with a Maze Procedure for Afib and LAA ligation…..Atrial Fibrillation, and underpinning it all Congestive heart Failure. Think I’ll take tomorrow off (I’m retired 😉) and take 2 naps and have a cup of tea & read a new novel by Madge Hall….
I’m laughing but self care has been a foreign word ….I’ve been “too busy” taking care of others. Thanx Carolyn for this post…. I’ve tended to not let myself realize I’ve really had a difficult 5 years….and it’s okay to acknowledge that to myself and others…..
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What a list! Sunny, you deserve to have two cups of tea tomorrow!!! It’s not only okay to acknowledge everything you’ve been through, but self-compassion is something we often need to practice (because so many of us just aren’t that experienced in that skill!) Best of luck to you…
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I’m always thrilled to hear anyone living with heart disease. My maternal grandpa died in 1978 at 48 from an MI. CABG was still experimental and he smoked – didn’t believe in doctors. Mom had her CABG at 52. Now I get to listen to her battle stories ad nauseam.
It is extremely painful since I’m a cath lab nurse and half of her terms are incorrect and she gets mad when I try to correct her. The other problem is my mom is diabetic and noncompliant! She does not control her diabetes nor does she exercise or follow a cardiac diet. So I give up. She also has refused cardiac rehab any time it is mentioned. What is so frustrating is she has a Masters in education! It’s not like there is a language or socioeconomic barrier to overcome with many of my patients. It’s that she’s just being stubborn and ignorant!
Argh! I’m not an RN, BSN in this case – I’m just her daughter. I have over 17 years experience as an RN and 14 years in critical care with 10 in cath lab alone! But she doesn’t listen to me!!!!!
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Thank you for this, Beth – you have described such a common dilemma (when you’re the professional who can’t seem to get through to your own family members!) This reminds me of my “I’m Just Not a Pill Person” post that I know you’ve read (because I recall that you reposted it here) – that helps to explain why even average, intelligent, educated people so often don’t do what everybody else knows they “should” to stay healthy.
The trouble is that even though we may say “I give up already!”, it’s really tough to just stop – yes, even when we’re clearly not getting the required results.
Hang in there and love her anyway…
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Good one! I think, though, that along with SCAD, there is Dissecting Aortic Aneurysm. Those two can each have a very significant mortality rate, too, so IMHO, that would rate #2 or a tie for #1. Heart transplant is mortality CERTAINTY and DAA/SCAD have risks that are related to urgency of repair or treatment, not that MI doesn’t, too.
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Thanks for that addition, Mary. Like MI, speedy treatment is indeed the key to surviving an aortic dissection, and the closer to the heart the dissection is, the greater the urgency. I think I’ll add this to my Hierarchy…
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In 2008, I was in another hospital, not in my usual one, to get a re-bypass operation. (For other readers: in 1983, I had triple bypass surgery at age 37. Since 1998, one of the bypasses became blocked. Now I have 8 stents in it). In 2008, I had unstable angina every night and that´s why I wanted a new bypass. This new hospital had been doing the most re-bypass operations at that time.
I shared a hospital room with a 32 year-young woman. After the birth of her second child (8 months old at that time) she developed peripartum cardiomyopathy. In her case, it had something to do with prolactin. Her heart was in such a bad condition that she was waiting for a transplant. She had no heart pain, but every night she could not stop coughing, because she could not get enough air. When her husband visited her, she was crying, heartbreakingly. The pictures of her lovely two daughters of 8 months and three years were hanging on the wall of our room.
I could get up and go up and down the hospital corridor waiting for my operation. To my surprise, I did not experience any angina attacks at night. While walking with my husband in the corridor, I met a young man with a mouthguard trying his first steps after heart transplant. — What am I doing here? It was lucky for me that after 4 days pre-examinations for the re-bypass, the cardiologist came and told me I had to go home and arrange a new appointment later, because there had suddenly been 4 transplants. But I never made a new appointment – half a year afterwards, my home hospital could open the blockage in my old bypass.
This was a hierarchy. But I must confess, they were very friendly and nice to me. It was my own feeling that I was not ill enough, seeing these patients waiting for a transplant or having already one.
The day after tomorrow I will celebrate 32 years with the same venous bypasses.
I had triple bypass, I have 8 stents, I have had three mute heart attacks before the bypass op and three real ones – one of them with stent thromboses. In 2000 I had brachytherapy, because of the re-blockages. Three times tachycardia, one was taken away with injection of Adrekar (adenosine), the last one with ablation. Adrekar was a bad experience, even if it was only a second that my heat stopped. It was worse than angina or heart attack.
How many points do I get? Sometimes I feel like a hero by telling my story.
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Hello Mirjami – it’s a good thing this isn’t a contest! I think that one reason I always love hearing from you is this: 32 years living with heart disease! In honour of that longevity, and for all those procedures and cardiac events you have survived, you deserve extra bonus points! I hope to be like you – still here 32 years from now to watch my wonderful little granddaughter grow up to have her own babies. You are indeed a hero in my book… ♥
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Hello Carolyn– we have the year 2018 and I am still living well with my heart. I have not got any new stents since June 2015. Do I have heart disease!?? I go for walking (5-7 km) in the forest every second day, sometimes more. I dont take any statins, but I eat home made food with little fat.
I have to confess, I never go to the doctor when I have not a serious problem with my heart. No preventive care. I believe in my own
feelings. “What doesn’t kill me, makes me stronger.”
In last two years I have had two full narcose, because I have got dental implants. Narcoses were not a problem at all.
How are you Carolyn? I hope well. I am wondering how much work you put in your blog and how you always know the good answer for everybody like a psychologist.
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Lovely to hear from you again. You are a wonderful example of somebody who has survived A LOT, and yet still lives your life! I am doing well, heart-wise, thanks for asking. Lately I’ve had problems with a torn muscle in my back that has distracted me from all of my cardiac symptoms!
But I learn from women like you how to just keep on.
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