YOUR DOCTOR AND YOU – Marilyn Armstrong

Today is the fifth anniversary of when I went into Beth Israel for my heart surgery. I had found my own surgeon by looking for the one guy who had significant experience repairing (rather than replacing) heart valves. Of course, I had no idea a repair was out of the question for me. For that matter, I had no idea what was going on with my heart at all. Other than breathlessness (which I attributed to asthma) I had no symptoms.

I had a local “heart” doctor who had told me I should wait until I had serious symptoms and then do something. It turns out that the typical first symptom of this particular ailment is sudden cardiac death. But regardless, I did have the definite feeling that my doctor was not a good choice and boy, I was really right.

Picking a doctor is difficult. We all have issues. Some of us prefer a woman or a man. Some want their doctor to be an older person. But most of us simply want a doctor who listens, cares about us. We probably also want an office where we can get a prescription taken care of quickly without a hassle. We want our doctor to be associated with a good hospital and other physicians who are capable in their areas of expertise.

Beth Israel Hospital in Boston.

I’ve had doctors who were great … when you could get to see them. I had one really wonderful doctor who seemed to be going for the “permanently pregnant” award. She was always out having a baby or on maternity leave and as her family expanded, her hours of availability diminished to almost non-existent.

The next doctor was good but had the worst front office I’ve ever experienced. They could never get a prescription written in less than a week, but they got the bills out in nano-seconds. She was also the one who sent me to the nearly lethal heart “specialist.”

I never could forgive her for that. If I had followed those instructions, I’d have died. Her circle of specialists was pathetic. Most of the ones with whom I had contact were a retread from a different specialty. They had minimal training in their so-called specialty and they gave bad advice.

After that, there was the guy who never listened to anything I said. I had the feeling that he didn’t think women were worth listening to. More to the point, Garry disliked him and Garry rarely dislikes anyone.

The office

When we found our current family doctor, it was like a light had gone on in a previously dark house. He’s young and smart and thinks differently. He’s not afraid to give me a prescription, but he’s careful about all the other stuff I take. He knows I’m in pain and he’s always trying to find something that might help. So far, we’ve come up empty. There’s not much I can take that’s safe.

It’s amazing how much help you can get from ice packs and heating pads.

So what about the Hypertrophic Obstructive Myopathy I was talking about and why am I going on about it?

Because it is genetic and often —  in 1 out of 2 cases –is inherited from a parent. It often fails to be diagnosed properly. Even when it is diagnosed, the diagnosing physician frequently fails to tell the patient his or her kids need to be checked for symptoms too.

I had no symptoms that I noticed — which is not the same as not having symptoms. If it weren’t for my primary doctor’s alarm at the sounds my mitral valve was making, followed by testing at Beth Israel, my life would have ended five years ago.

If I had waited, my only serious symptom would have been my sudden death.

If you have something wrong with you — maybe something serious or you’re not sure — and you think maybe the doctor treating you isn’t getting you, isn’t listening, isn’t taking you seriously — get another doctor or at the very least, another opinion.

It can be worth your life.

A CALL FROM THE HEART GUY – Marilyn Armstrong

I hadn’t heard from the heart doctor. Having not heard anything, I eventually concluded that there must be nothing important to talk about because if there were, someone would have mentioned it.

This evening, the doctor called.

So it turns out — by the doctor’s reckoning — there’s not much to discuss.  From my point of view, a bit more to talk about.

My heart is as good as one can expect it to be — given how much surgery has been done and its condition to begin with. Hypertrophic Cardiomyopathy is a big deal and I had it for a long time before I knew about it.  I’ve had two replaced valves — aortic and mitral, as well as a replaced artery and an implanted pacemaker that will — in maybe four or five years — need a new battery. Assuming I’m still kicking around in four or five years.



How is my heart doing? As well as can be expected, thank you very much. The atriums are oversized, the ventricles are over-muscled, but all things considered, the heart is pumping reasonably well.

“So I’ve got another year you figure?”

“Probably.”

“That’s good. I don’t have to start packing yet.”

Of course, I don’t have the results of yesterday’s test yet, so who knows?

A GOOD NEWS-BAD NEWS KIND OF DAY – Marilyn Armstrong

Hypertrophic obstructive cardiomyopathy.

That’s what was wrong with me.

I had my heart surgery 4 years 11-1/2 months ago. As far as I knew, I never got an explanation of what exactly was wrong with me or what was done during the surgery. I didn’t know I had TWO valve replacements until a few weeks ago and I don’t know which artery was bypassed during my bypass.

To be more technical, the surgeon apparently explained everything, but I was so heavily drugged I’m not sure if I was awake for the explanation. I know I missed the whole thing about the second valve replacement because my best friend knew about it, but I didn’t. She wasn’t floating on Fentanyl.

The good news? UMass and Beth Israel are now connected so they can get my medical records. Eventually, it might sift down to me.

The bad news? My son needs to be checked for the same problem. His father died from heart-related problems as did both of his grandfathers and only luck kept me from sharing the same fate. So he has reason to be concerned about the condition of his heart. His father was only three years older than he is now when he died.

So, you ask, what exactly is “hypertrophic obstructive cardiomyopathy”?


From the Mayo Clinic: Overview

Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle (myocardium) becomes abnormally thick (hypertrophied). The thickened heart muscle can make it harder for the heart to pump blood.

Hypertrophic cardiomyopathy often goes undiagnosed because many people with the disease have few if any, symptoms and can lead normal lives with no significant problems.

However, in a small number of people with HCM, the thickened heart muscle can cause shortness of breath, chest pain or problems in the heart’s electrical system, resulting in life-threatening abnormal heart rhythms (arrhythmias).


NOTE: I had no symptoms that I noticed — which is not the same as not having symptoms. If it weren’t for my primary doctor’s alarm at the sounds my mitral valve was making, followed by serious testing that I had done at another hospital because the cardiologist to whom she sent me suggested I not worry about it until I had serious symptoms.

In this case, the serious symptom would have been sudden death, so I’m glad I realized the man was a jerk and went elsewhere for care. Even after all the testing, no one had any idea how serious the problem was until I was already in surgery. At which point, it was oh so clear.


I did not have chest pains, but I did have serious
shortness of breath.

Since I had asthma, I assumed my shortness of breath was asthma acting up. But I was wrong. It was not asthma but my ventricle packing its bags and trying to leave home without me. This is one of the problems of having multiple issues. Symptoms can (and do) overlap.

It’s really easy to assume that the problem you’re having is something familiar — like asthma. Except — shortness of breath can mean many different things. Heart disease is only one of them.

I once badly misdiagnosed a dog who had a known problem, but her problem was not the one I thought she had but something else. She died. We never found out what killed her, even after an autopsy. We assumed it was Lyme, but we never got a firm diagnosis. Lyme is funny that way.

Moreover, I never imagined I had a heart problem because my father’s heart problem was asymptomatic. As mine was until suddenly, it wasn’t.


Symptoms

Signs and symptoms of hypertrophic cardiomyopathy may include one or more of the following:

            • Shortness of breath, especially during exercise
            • Chest pain, especially during exercise
            • Fainting, especially during or just after exercise or exertion
            • Sensation of rapid, fluttering or pounding heartbeats (palpitations)
            • Heart murmur, which a doctor might detect while listening to your heart
Causes

Hypertrophic cardiomyopathy is usually caused by abnormal genes (gene mutations) that cause the heart muscle to grow abnormally thick. People with hypertrophic cardiomyopathy also have an abnormal arrangement of heart muscle cells (myofiber disarray). This disarray can contribute to arrhythmia in some people.

The severity of hypertrophic cardiomyopathy varies widely. Most people with hypertrophic cardiomyopathy have a form of the disease in which the wall (septum) between the two bottom chambers of the heart (ventricles) becomes enlarged and restricts blood flow out of the heart (obstructive hypertrophic cardiomyopathy).

Sometimes hypertrophic cardiomyopathy occurs without significant blocking of blood flow (nonobstructive hypertrophic cardiomyopathy). However, the heart’s main pumping chamber (left ventricle) may become stiff, reducing the amount of blood the ventricle can hold and the amount pumped out to the body with each heartbeat.


Risk Factors

Hypertrophic cardiomyopathy is usually inherited. There’s a 50 percent chance that the children of a parent with hypertrophic cardiomyopathy will inherit the genetic mutation for the disease. First-degree relatives — parents, children or siblings — of a person with hypertrophic cardiomyopathy should ask their doctors about screening for the disease.


Complications

Many people with hypertrophic cardiomyopathy (HCM) don’t experience significant health problems. But some people experience complications, including:

            • Atrial fibrillation. Thickened heart muscle, as well as the abnormal structure of heart cells, can disrupt the normal functioning of the heart’s electrical system, resulting in fast or irregular heartbeats. Atrial fibrillation can also increase your risk of developing blood clots, which can travel to your brain and cause a stroke.
            • Sudden cardiac death. Ventricular tachycardia and ventricular fibrillation can cause sudden cardiac death. People with hypertrophic cardiomyopathy have an increased risk of sudden cardiac death, although such deaths are rare. Sudden cardiac death is estimated to occur in about 1 percent of people with HCM each year. Hypertrophic cardiomyopathy can cause heart-related sudden death in people of all ages, but the condition most often causes sudden cardiac death in people under the age of 30.
            • Obstructed blood flow. In many people, the thickened heart muscle obstructs the blood flow leaving the heart. Obstructed blood flow can cause shortness of breath with exertion, chest pain, dizziness, and fainting spells.
            • Dilated cardiomyopathy. Over time, the thickened heart muscle may become weak and ineffective in a very small percentage of people with HCM. The ventricle becomes enlarged (dilated), and its pumping ability becomes less forceful.
            • Mitral valve problems. The thickened heart muscle can leave a smaller space for blood to flow, causing blood to rush through your heart valves more quickly and forcefully. This increased force can prevent the valve between your heart’s left atrium and left ventricle (mitral valve) from closing properly. As a result, blood can leak backward into the left atrium (mitral valve regurgitation), possibly leading to worsening symptoms.
            • Heart failure. The thickened heart muscle can eventually become too stiff to effectively fill with blood. As a result, your heart can’t pump enough blood to meet your body’s needs.
Prevention

Because hypertrophic cardiomyopathy is inherited, it can’t be prevented. But it’s important to identify the condition as early as possible to guide treatment and prevent complications.

Preventing sudden death

Implantation of a cardioverter-defibrillator has been shown to help prevent sudden cardiac death, which occurs in about 1 percent of people with hypertrophic cardiomyopathy.

Unfortunately, because many people with hypertrophic cardiomyopathy don’t realize they have it, there are instances where the first sign of a problem is sudden cardiac death. These cases can happen in seemingly healthy young people, including high school athletes and other young, active adults. News of these types of deaths generates understandable attention because they’re so unexpected, but parents should be aware these deaths are quite rare.

Still, doctors trained in heart abnormalities generally recommend that people with hypertrophic cardiomyopathy not participate in most competitive sports with the possible exception of some low-intensity sports. Discuss specific recommendations with your cardiologist.


If this wasn’t a good news-bad news day, I don’t know what would be. The good news? All things considered, I’m doing fine. As far as I know, the valves are doing their valve-thing.

I’ve got 8 years — 5, realistically — before I’ll need a replacement battery. I also learned why I will never be able to live without a pacemaker. I had thought that maybe my heart would start doing the job all by itself one day, but that will not happen. But, assuming the rest of the tests next month indicate that all is well, I need to worry about my son, not me.

I think I’d rather worry about me.

If there is a moral to this story, it’s don’t self-diagnose. If you think something is wrong, don’t assume you have the answer. The odds are, you don’t. The internet is a good place to look up an existing diagnosis, but a bad place to get a new one. If it turns out your best guess was right, congratulations, but this is one of those times when an error can prove fatal.

I still think this problem wouldn’t have become such a life-threatening issue had I not also inherited my mother’s breast cancer. The drugs they feed you when you have cancer … well … I’m not even sure the doctor’s know what they do.

For the avoidance of goriness reasons, I decided you don’t need more pictures. You can always Google this yourself and see all the gore you want.

INTREPID BY ROAD – Marilyn Armstrong

FOWC with Fandango — Intrepid

Intrepid will always be the name of one of Horatio Hornblower’s ships. Somewhere in my 20s, I discovered Horatio Hornblower … and that’s how I learned that there was an actual use for trigonometry! If only they had mentioned this in school, I might have had a clue what I was doing instead of random calculations used to reach an answer that meant absolutely NOTHING to me.

We probably should have named The Duke “Intrepid.” He is quite the intrepid voyager. Except he likes when we come out and let him IN the yard, even though he jumped out. I guess out is easier?

Today I am off to see the wizard, also known as my cardiologist. He’s a new one. I’m trying to finally shake off Boston and get all my physicians lined up locally. Boston made the news the other night as officially (who is the official calculator of such things?) having the worst traffic of any city in the U.S. Not in the world. I think there are quite a few cities in Europe (and how about the traffic in London!) that could compete.

Boston has gotten terrible. When I moved here in 1988, traffic wasn’t great, but you could get from one place to another and generally even park when you got there. Not any more. Not only can it be impossible to get there, but if you do parking will cost the price of feeding two people for a week. Or more.

Bad. Very, very bad.

We spent something like 50 billion dollars to remodel our road and I swear they are worse than they were before we spend more than a decade redoing everything. The thing is, they move things around, but they didn’t make them bigger. Just stuck them underground (cough, cough, cough) or straightened out the crooked pieces.  So we’ve got nice straight bumper-to-bumper traffic.

Boston traffic is only for the intrepid.

We’re away shortly. As we head for UMass, a mere 20 miles away, call us intrepid. Also, please hope they don’t find anything new or interesting.

THE TIMELINE – Marilyn Armstrong

Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.

The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.

The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.

I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?

Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.

That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.

Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.

Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.

I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.

I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.

I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.

I want to be able to move and not spend most of my life fending pain.

I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.

So, following the holidays, it’s time for a long, complicated talk with the doctor.

I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.

Sensible ideas are welcome. I have choices to make and it’s time to make them.

IS THE U.S. CAPABLE OF BEING A LEGITIMATE NATION? – Marilyn Armstrong

FOWC with Fandango — Heart


Yesterday was some kind of turning point for me. My heart broke. Because the same shit that I went through as a young woman is still happening and now we are going to sit one of these shitbags on the Supreme Court.

Shame on us, shame on our political system and its keepers.

I’ll vote. I’ll write. But I think I’m losing hope, heart and any kind of faith that we are capable of running a nation.

RDP # 61: PULSE – I’VE GOT ONE! – Marilyn Armstrong

RDP # 61: I have a Pulse 


There was a time when whether or not I would continue to have a pulse was a matter of considerable discussion. Apparently, if I didn’t have a lot of surgery, it was going to go away and not come back.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough and that is supposed to make you feel better.

I didn’t like that idea much, so eventually, I had the surgery. Two pig valves, one myocardial-something-or-other-y in the left ventricle, a bypass, and a Pacemaker later, everything pulses in a reasonably tidy, efficient way. As long as the batteries don’t wear out, or one of the animal valves stops working, I’m good to go.

So far, anyhow.

I have a pulse. Check yours. It’s always useful to keep checking.