How do you mend a broken heart? Lately we’ve been dealing with my darling wife’s encounter with Takotsubo Syndrome and the struggle to find the way through to an actual treatment protocol for this rare condition. Takotsubo Syndrome is also known as Broken Heart Syndrome.
We all need help and guidance. How are we expected to mend a broken heart?
The BeeGees posited a variation on the question in their song written in 1971, and the quest to find an answer to such an emotionally charged question was echoed when Al Green recorded the song in 1972 after Johnny Mathis had success with his recording of it in 1971.
I don’t know that we’ve ever really gotten a straight answer to the question, and it continues to linger especially in the context of the medical condition know as ‘broken heart syndrome‘. The more scientific name for the cardiac condition is takotsubo cardiomyopathy.
The nature of Takotsubo cardiomyopathy is just so weird.
Our medical professionals know so little about this syndrome which may be because it was only really identified as a ‘thing’ back in 1990. There’s not a lot of history, clinical evidence and definitely not a lot of targeted research, which makes it so much more difficult for the sufferer, the family and the friends who are searching for answers.
Why did it suddenly ‘appear’ in 1990?
I don’t hold the belief that it just ‘appeared’ although I’ve heard that some folks say it may be as a result of, or at least an indicator of, the stresses of a changing society. I tend to be of the opinion that with advances in medical imaging and the supportive technologies that have become available to the medical profession the syndrome finally became identifiable as something different than ‘heart attack’ and ‘heart failure’. I suspect that its always been there. The medical profession were simply unable to see it as different from a myocardial infarction.
Even today doctors don’t have many answers to give us. There are research programs in play now, finally; hooray for the Brits and the Australians! If you have been diagnosed with the syndrome and you’re asked to participate in a study, please say ‘yes’!
We all need to know more. The medical body of knowledge available is inadequate and doesn’t provide the family doctors or medical general practitioners a lot to work with.
What is Takotsubo Syndrome?
What most cardiac specialists can tell us is that Takotsubo Syndrome is a temporary state for the heart where the heart muscle is suddenly weakened, or ‘stunned’ and the heart changes shape. To be specific it appears that in particular it is the left ventricle that changes shape, and not the entire heart muscle. With the change in shape the heart doesn’t perform as well as it does under normal circumstances.
That statement in general is pretty damned scary! How do they know your heart isn’t performing well?
We have been told that there is an efficiency measurement called the ‘ejection fraction’. And yes, that’s ‘fraction‘, not ‘factor‘.
We did research into what the term ‘ejection fraction‘ means as we were looking into more about the heart in general. It turns out that ejection fraction (a.k.a. EF) is a measurement used by physicians, especially cardiologists, to determine how well your heart is functioning. An EF is a measurement of the percentage of blood that is pumped out of the heart during each beat.
“Ejection” refers to the amount of blood that is pumped out of the heart’s main pumping chamber, the left ventricle, during each heartbeat.
“Fraction” refers to the fact that, even in a healthy heart, some blood always remains within this chamber after each heartbeat.
- An EF is a statement of the percentage of blood that is pumped out of the heart during each beat.
- Ejection fraction is a key indicator of heart health.
With Takotsubo Syndrome and the changing shape of the left ventricle, the ‘ejection fraction’ value drops showing a change in the heart’s efficiency. The heart isn’t clearing all the blood out of the ventricles with each beat. The heart-rate, usually measured in beats per minute, goes up as the heart works to compensate for its sudden inefficiency.
Just as an informational side-bar; the syndrome is also referred to as acute stress-induced cardiomyopathy, probably because of the nature of what happens to your heart and how the doctors think it happens. I’ve found references to it as apical ballooning syndrome. I thought at first that was a spelling mistake, however, it turns out that ‘apical’ is a real word and is used by the medical profession. Looking it up on www.medicinenet.com turned up this definition: “Apical: The adjective for apex, the tip of a pyramidal or rounded structure, such as the lung or the heart. For example, an apical lung tumor is a tumor located at the top of the lung”. This reference to apical has nothing to do with the lung. We’re talking about the heart here.
Questions they’re going to ask you while diagnosing the condition is whether or not you are taking any anti-depressants or anti-anxiety drugs which is a precursor to the the real question; do you have any history of mental health issues.
Adrenalin, cortisol and the other so-called stress hormones are all somehow involved in this. We’ve extrapolated from what we’ve been told and read that elevated levels of these hormones become the chemical triggers that lay a blueprint for transformation and tell the heart to get ready to make a change. Think about the stress hormones such as cortisol which is often associated with stress-related weight gain, blood sugar imbalances, blood pressure regulation and other metabolism functions including the production of adrenaline. Add a final stressful incident and your heart makes the change. Could it be that your heart gets the final cue to ‘change’ from the sudden introduction of adrenaline? It seems to be generally accepted with the syndrome that a singular life event such as the death of a loved one, or even a surprise party can be the final trigger for the transformation of the heart.
As we move through our challenge and experience with this syndrome together as a couple it feels very much like a comedy of errors, almost a full-on french farce. If you know us, and our connection with theatre and the stage, you’ll understand my use of the ‘french farce‘ comparison.
The medical profession can diagnosis what the challenge is but are ill-equipped to give us substantive advice as to what happens next.
We are not the only ones in the world who have been sent home from hospital with no assigned cardiologist, no followup procedures or future appointments, and no instructions as to how to live a life now in turmoil. The vague and somewhat ubiquitous DAT and AAT notations on the discharge sheet tells us very little. DAT=diet as tolerated. AAT=activity as tolerated. Huh? You can eat anything and do anything unless it makes you fall over?
To be fair, most physicians who are suddenly confronted with this syndrome have little to no awareness of it and even less training in what to do about it. There’s not a lot they can do except respond to the symptoms they recognize which are a familiar part of their emergency cardiac medicine lexicon, so they choose to do the minimally invasive and least overtly harmful. Thank goodness for the Hippocratic oath; first, do no harm. The challenge is that what superficially appears as a form of benign neglect turns a physiology problem into a psychological one.
Don’t ignore me or my partner!
the incident ‘narrative’;
The girl was at the gym participating in an aerobics class when she noticed that the shortness of breath she was experiencing was reflected on her Fitbit® wrist band as a pulse of 147 BPM, which is not really a great idea for a woman of her age.
Hmmm. I should probably consider another way to identify my darling rather than as ‘the girl’, ‘her’ or ‘she’. It seems a bit disrespectful, way too generic and diminishes her maturity. Not sure how to do it and still maintain her anonymity. And as her mother is fond of saying, ” ‘she’ is the cat’s mother”. As a tease but definitely as an endearment I and certain of our friends refer to my love as ‘her ladyship‘. So, from here on I will occasionally refer to her as ‘her ladyship‘ for context.
I did ask if she minds if I start to use her first name. She’s fine with it.
Gail slowly withdrew from the class, staying quiet and working on being still in an effort to allow her heart rate to come down. Her normal resting heart rate is 69 BPM. The BPM did start to drop, slowing to a level at which her ladyship felt comfortable enough to drive home. She admits that it was still well above 110 BPM. She also admits now that she had developed a pain in the left side of her chest that presented as a sharp, pointed pain behind her left shoulder blade.
Once home, showered, and changed into a loose house dress, she was convinced to lie down and relax. A call was made to ‘health-link’, a fabulous service of the public health services in Alberta.
After a brief, but pleasant chat with one of the on-call nurses, I was encouraged to hang up, and call 911. If you haven’t done this just let me tell you that it is incredibly unnerving. ‘Police, ambulance, or fire?’ is how the phone is answered. And once you say ‘ambulance’ the next instruction from the operator on the other end is ‘stay on the line!’ and then they start to ask questions.
They want to know the nature of the emergency, then they confirm the address and location, and then…and then there is the very subtle delay while they confirm that there is a paramedic crew in the area and how long it will take to get them to you, and then they say something to the effect of “stay on the line. There’s a crew on its way. I’m staying with you until they arrive….” And they do, or at least in my situation, they did. Thank goodness they did.
And yes, I immediately flipped my phone onto ‘speaker‘ mode.
Her Ladyship had once served as the municipal director for the fire and paramedic services in our city, so the anxiety level immediately spiked; my Gawd! The paramedics would see how terrible my housekeeping had become! Wait a minute! I’ve got a good 10 minutes to tidy before anybody shows up. Not so much. Geez, they were fast, and it wasn’t because they knew who they were coming to see. No. That came later.
I was caught wearing my ropers (don’t know what they are? Look at some of my other posts about boots.) a pair of jeans of questionable cleanliness and a Brooks Brothers white dress shirt. suddenly I was managing two paramedics and three firefighters in our two-bedroom townhouse in a second-floor bedroom where I had convinced her ladyship to lay down.
Dueling portable EKG units is an interesting thing to see. ” ‘Mine is suspect.” versus “Mine shows something odd with the T’s …” and then the captain trotting up the stairs. “‘Transport Now! There’s a team waiting for her in the RAH cath lab. Move her now.”
Once the paramedics reached the hospital they whisked her straight through the emergency department (AKA Casualty) and to the catheter lab where a team was prepped and waiting to perform an angiogram to map her heart functions and then to followup with the required angioplasty. During the angiogram, the team determined that her arteries and veins ‘were as clean as whistles’!
“I know what this is!” declared one of the cardiologists managing the angiogram imaging, who then went on to explain the concept of takotsubo to the uninitiated in the room. And yes, he basically ran through the checklist for the others to illustrate his point. I don’t know if there is an actual checklist, but here is a rough outline of what to be on the lookout for;
An incidence of severe emotional or physical stress; death, birth, marriage, surprise party, iron man trials which then presents some of the standard heart attack symptoms. Notice that I said some. not all the symptoms are there, but just enough to raise the red flags; shortness of breath, chest pain, elevated heart rate.
An electrocardiogram, even the portable handheld units used by mobile emergency medical technicians will show the requisite abnormalities for a heart attack; this is important for the attending paramedics to see to help them understand that this is a real cardiac event.
There isn’t any sign of coronary blockage to arteries or veins.
The silly thing that contributed most to our dramas after leaving hospital was the simple fact that the incident happened at the beginning of a holiday weekend. The paperwork got ‘misplaced’, and was never properly assigned to a cardiologist for followup and treatment. Her ladyship’s file got passed around and around and, anecdotal evidence suggests, crossed the desks of four different cardiologists in its journey to find a place to land. A medical receptionist/clerk was informed of our plight, and she went searching for the file. When she finally located it she gathered the four specialists involved and demanded that someone step up and take responsibility for her ladyship’s treatment. She won! We now have a cardiologist of record, and we’ve started and finished cardiac rehab at the local rehab hospital.
This isn’t a completely clean bill of health. She remains on heart meds, an ace inhibitor, and a beta-blocker and will do so for a few more months just to be safe.
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