I have coronary artery disease

Gulp. This one is hard to swallow. Even though I was fully aware of my vulnerability to cardio vascular disease, the reality still lands hard. At 65 years old, I now square off with a threat that plays for keeps. The emotional and psychological burden ranks right up there with the seismic shock of my type 1 diabetes diagnosis so many years ago.

With nervous anticipation, I opened the MyChart test results from a coronary artery calcium scan I had performed last month. The bad news in the report shocked my sense of well-being.

The cold hard facts

The physician interpreting this scan did not mince words.

There is severe coronary artery calcification…. This corresponds to the 81st percentile for age and gender.

I’ve been aware for many years that the chief cause of death among people with diabetes is coronary artery disease. In the years leading up to this diagnosis, I took comfort in the fact that I received good reports ten years ago when I underwent a coronary artery stress test and five years later a carotid artery intima media thickness scan.

Family history and diabetes

With a family history of heart attacks and strokes and my long years living with type 1 diabetes, I knew the risk. Six years ago, I made drastic changes in my lifestyle primarily to regain control of my blood glucose but also with the secondary motivation to lower my risk of coronary vascular disease. I reduced the carbohydrates in my diet to a relatively low level, began walking every day, and started to closely monitor my blood glucose data produced by my continuous glucose monitor.

While I was painfully aware that I could not alter my genetics or the fact that I have diabetes, I could darn well do something about reining in my blood glucose numbers. My efforts paid off. With my reduced carb consumption, I cut my total daily dose of insulin in half, lowered my A1c, glucose variability, and my average glucose. My time in range skyrocketed. I was aware that this may not be enough given family history and diabetes, I took comfort knowing that I was doing the best I could.

Cardio vascular disease often leads to heart attacks and strokes. It is a killer. Its threat invaded my sense of well-being and shook me as much or more than my original diabetes diagnosis. In the early 1990’s, I watched my father endure a series of four strokes over several years. The consequences of the last stroke led to his death. It was a grim way to go.

Drugs and procedures versus lifestyle changes

My cardiologist is strongly urging me down a path of drugs and procedures. Even though I am just a patient, I harbor a basic mistrust of this “professional” advice. I know from reading studies that cholesterol lowering drugs do not extend the life of those who take them. I also know that the huge amount of money in the pharma and hospital industry can cloud the ethical judgment of the people involved.

My attitude is strongly informed by my five-year, three-endo diabetes crisis that finally ended when I took ownership of my diabetes. When I look back on those every 90-day doctor visits, I feel like the doc was simply documenting my demise without any useful guidance. I carry this history to my present view of doctors and their advice.

I have found a coronary artery disease on-line community that shares my views of this topic. They think that drugs and procedures should not be the first choice of treatment, even though that is appropriate in individual circumstance. Their main tools consist of elimination of dietary grains and sugars, optimizing thyroid blood test numbers, supplementing omega 3 fatty acids, vitamin D, and vitamin K2. They also think that optimizing gut health plays a role.

This stance buoys my hope, but I know all this effort may not help me. One comment made by another member of that community helped shape my point of view. He said that he had the same coronary artery score as me, but at five years younger than me, and he doesn’t have diabetes.

My path forward and the psychological challenge

So, I now dedicate myself full-time to trying to put the brakes on this looming cascade of events likely to end my life. I realistically realize that my success in this effort will be measured on my ability to slow this progression.

One psychological dimension I had never seriously thought about this diagnosis is the uncertain sense that I could die today, tomorrow, or maybe in ten years. I know this is the reality we all face from the moment we grasp our own mortality. But somehow, facing the details and possible very shortened timeline, does change how you look at it.

It took me a month to gather up the courage and perspective to write about this. I knew that I would write because I know that writing helps me process difficult problems. I also appreciate that many people here will read what I write and possibly put my experience to some good use in their lives. Thank-you all for that!

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(((((Hugs)))))

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Terry,
I am very sorry to hear about this.

Are you getting a cardiac catheterization to check for blockage? Or did you already have that?

My understanding is that a calcium score alone does not indicate the amount of blockage, that they need to do a coronary CTA or a cardiac catheterization to see how much blockage you have.

This is tough, I know. Sorry to hear it.

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Thank-you for your supportive comments, @Eric2.

I understand that the coronary artery calcium scan does not measure the percent blockage. The next test I’ve agreed to undergo is a stress echocardiogram. I expect the test to consist of measuring the heart electrical signature while performing an untra-sound scan both at rest and under exercise. That should imply to some extent how much blockage is in my coronary arteries.

I know that cardiac catheterization involves some level of risk. The doc hasn’t brought that up yet but, as skeptical as I am, I will let him make his case and listen him out.

The calcium scan only shows the calcium component of the plaque. The test reports, I understand, does a mathematical calculation and builds in the unseen cholesterol and fibrinogen plaque components into its ultimate score.

The ECG and stress tests are interpreted. They can say that a certain % of people with a similar result had a certain blockage or whatever. But the ECG is only looking at electrical signals from your heart.

The gold standard is for them to take the 3D images of your heart valves.

There is always some level of risk with any procedure. It’s a calculated risk, but it gives you actual images.

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My coronary artery calcium scan results did say that “the cardiac valves exhibit no calcifications.” That looks like some good news, but I’m not sure what effect that plays in the larger analysis.

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love you @Terry4

it took courage to post this, you will never know who will benefit from your telling us

besides me, of course

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Marie, your comment brightens my day. Good to see you here!

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@Terry4

Sending you a BIG HUG, and my best wishes.

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Thanks, Mila. The parents of T1D children, like you, continue to inspire me!

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Terry,

I’m so sorry to hear your news. I’m not as distrustful of medical interventions as you appear to be. I urge you to be open to all opinions - even professional opinions - as you try to set yourself a course. You’ve been a big help to me (and many of us) over the years and I hope we can return the good sense and kindness.

Maurie

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I see the wisdom in this and I will try to keep my my eyes, ears, and mind open! Thank-you for your encouragement, Maurie.

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I’m sorry you received this diagnosis. I’m sure that is scary. Personally a number of years ago I decided to take pravastatin to bring my cholesterol numbers back inline. I also have a family history of heart disease and bad outcomes. I researched the options and ultimately decided to take pravastatin not knowingly whether it was the right or wrong answer. Ultimately it came down to it being one lever I could pull that might help reduce my risk. I have no side effects, so don’t think it is harming anything. Is it helping? Who knows. The cost of generic pravastatin is minimal.

Anyway, my thoughts are with you. Keep us posted.

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Why even test for such things? The increased self-efficacy you have by being forewarned through such tests versus the premature depression you have to suffer by knowing about the problem earlier than nature would have alerted you yields a cost-benefit analysis favoring not knowing. A huge aspect of disease is the medicalization of your life in trying to avoid problems, which is not always even effective, so I prefer not to know.

Terry,

You have a great attitude. Enjoy! Keep living! And do what you believe is the right thing to do.

All other choices just don’t measure up.

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I do think there are situations where ignorance is indeed bliss. I don’t think this is one of them, however. I think I can affect the trajectory of my heart disease progression through a combination of many lifestyle choices.

The results of this coronary artery scan gives me a chance to change my path. It also provides lots of motivation to energize that everyday effort. I could be wrong!

But, in the end, I will know that I made every effort to remain here for a few more days or years. I take much pleasure in my life and still look forward to seeing more of this world and maybe even meeting some grandkids!

I also take pleasure every day in being this canine’s companion! A simple joy whose depth continues to amaze me.

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We each have the “skin-in-the-game” authority to make these choices for ourselves. Thank-you for your kind wishes!

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This meditative brain-wave audio feedback system, Muse, might be able to help me lower my blood pressure.

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Hi @Terry4,

I am sorry to hear of this diagnosis. I am glad that you’ll be putting all your resources towards slowing its progress.

I recently saw a cardiologist as I’ve been having problems with heart arrhythmias. Since I have had diabetes for so long, she gave me her advice for maintaining a healthy heart:

  • Keep blood pressure, cholesterol, and blood sugar controlled
  • Reduce or eliminate stress as much as possible
  • Eat as many fruits and veggies as possible
  • Do moderate exercise most days of the week
  • Reduce or avoid eating red and processed meat
  • Ensure you’re getting enough good quality sleep

I know that you may not agree with all of these, but I just thought I would put it out there in case there are areas you have not looked at yet.

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While there seems no downside, I am curious how sleep would come into play from a medical point of view in this particular issue? Was any explanation provided?