NCIS AND MY PACEMAKER – Marilyn Armstrong

EPISODE: Need to Know (2012)

Alan Katzenbach, a lawyer, waits for Gibbs with his client, a chief petty officer named Leland Wiley. Wiley was busted for drugs and wants to trade his info — which he says is about national security.

It concerns Agah Bayar, the arms dealer. Gibbs is interested. Wiley comes over to talk, but grabs his heart and drops to the ground.

ncis-need-to-know

Gibbs comes for the update from Ducky. Turns out, Wiley had top security clearance and his workstation is locked down. They haven’t been able to connect him to Bayar yet.

Abby calls Gibbs to the lab. She tells him Wiley’s pacemaker was linked into a computer to monitor it. Someone hacked in and jacked his heart rate up to 400 beats per minute.

“Somebody murdered Wiley by remote control,” she says.


What does this have to do with me?

Well, glad you asked. This episode so intrigued the heart surgery team at Beth Israel Deaconess in Boston (where I had all that heart surgery in March 2014), that they decided to find out if it really could be done. One of the people that performed the experiment was my surgeon.

They did it. My surgeon did point out as far as they could tell, to actually hack a pacemaker you had to be no more than a couple of feet from it. Nonetheless, they made the manufacturer change the programming.

In theory, nobody can hack my pacemaker.

I find this comforting. Garry finds it disturbing and I suppose I can see where he’s coming from. He doesn’t like thinking about the mechanical and electronic stuff that keeps me alive. It would creep me out too, but I’m a bit of a geek.

RBB-pacemaker

I find the technology sufficiently interesting to overcome its inherent creepiness. It is creepy. However, it doesn’t matter. No matter how I feel about it, I’ve got this thing in my chest. It keeps my heart beating. If my heart would beat on its own, I wouldn’t need a pacemaker.

In the beginning, they used to stop my heart will beat without it. My heart stops beating. Talk about creepy. It is a very unpleasant — and indescribable — sensation.

The blue tooth remote functions still work. They are (in theory) more secure than they were a couple of years ago before the NCIS episode aired and the guys got curious about it. Remote functionality is important. After all, I might need a tune-up. Blue tooth lets my doctor access my pacemaker from … how far? I don’t actually know. A considerable distance, whatever that is.

Garry — again — doesn’t want to know about it. I pointed out if someone murders me, this is potentially important evidence. He would still rather not think about it.

So there we are. Too creepy?

I can feel my pacemaker. It sits on my left shoulder. The outline is visible. I can feel the wires, the connections through my skin. I find it impossible to ignore. I might as well find it interesting. It’s part of me, after all.

And no matter what, I will always have that Pacemaker because, after all those tests, my heart absolutely will not beat without it.

WHOLE BODY HEALTH: I KNEW IT! – Marilyn Armstrong

I was sure that the damage to my heart was related to the drugs they gave me for cancer which had been dealt with just four years earlier.

Tonight, on CBS News, they are finding a direct link between breast cancer and cardiomyopathy. The wrong chemo, an incorrect amount of radiation, the wrong drugs and what has kept them from making the connection before was that the heart damage often doesn’t show up for years following cancer … as long as a decade. My time was 4 years.

I had been saying to other people I know who are having heart issues … specifically myopathy … involving damaged valves and thickened ventricle walls which make pumping more (and more) inefficient who also — earlier — had cancer. Asking them if they think the treatment they got for cancer may have been the starting point for their heart issues. The answer is a long pause and “I don’t know. I always wonder about that.”

I have always said that the problem is that we are not pieces that you put together like a jigsaw puzzle. Everything is connected to everything else. I’m sure of it and no, I don’t have statistics to prove it. It takes dozens of years for these stats to finally be proven, but you know. You are just sure, but you’re not a medical professional and you don’t have the facilities to run the tests.

I did put the idea to my oncologist and all three of my cardiologists. While no one would confirm my feeling that these issues were not separated, they were also unwilling to tell me “no way, can’t happen.” Because they see how many people who have previously had cancer show up with cardiomyopathy. You don’t necessarily need years of testing to spot a trend.

Meanwhile, as more of us sense the increasing tendency of the medical community to use smaller specialization, the rest of us are sensing this approach is inconsistent with reality as we feel it.

I have been saying for a long time that there aren’t a lot of things wrong with me. There’s one thing and all these other issues are merely a part of a much bigger picture.

I can’t prove it, but I believe it. Doctors need to look at us as a unit. They need to look at all of our working parts. Not just look at our hips without making sure the spine is functioning. To not look at one’s hands without understanding how the wrist is coping or for that matter, the shoulder and elbow.

It is incredibly frustrating to know in your gut that there’s something important happening in your body, but no one is LOOKING at your whole body.

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.

RDP #23 – I HAVE A HEART — Marilyn Armstrong

RDP #23 –  HEART

I have a heart.

Everyone (living) has one. These days, the issue is whether or not it works like it ought to. You know, compassion. Caring, love, concern. That stuff.

Mine is a little more complicated. I have two replaced heart valves – mitral and aortic. I also had a myocardectomy involving removing an oversized muscle in the left ventricle which had grown exponentially because the mitral valve wasn’t working. There was also a bypass and implanting a pacemaker.

A fantastic amazing wonderful heart surgeon.

After they opened my chest, it never properly healed. This has made full-scale recovery difficult. There’s nothing that can make the chest heal if it doesn’t want to.

Sometimes, injuries don’t heal. They should, but for some reason, don’t. The medical team will tell you it will, but it depends on your body’s ability to recreate cartilage. Your chest isn’t solid. It’s a mobile design so you can breathe.

Until my chest didn’t heal, I had no idea how many different parts of my body were connected to my chest.

I didn’t know there was anything wrong with my heart except for that annoying murmur I’d had since I was a child. I knew I was out of breath often, but I was still recovering from a recent bi-lateral mastectomy (cancer), so I wasn’t at my peak. Whatever my peak might be. I’m not sure I’ve been at a peak for years. Like maybe 15? Or maybe never?

Note the dog hair. It makes it “smell right” …

Anyway, they told me that after all this repair work was done, I would feel MUCH better. Except my heart wasn’t bothering me. It’s my back that really kills me.

Four years later, I feel better. I’m 7 years past cancer and almost four years post heart surgery and I’m gradually becoming human. Unfortunately, I’m also 7 years older which, at my age, is a not an inconsiderable difference. You don’t bounce back from surgery the way you did when you were younger.

Nonetheless, I am better. I haven’t been sick except for a cold and a stomach virus and they only lasted a few days. What’s left is a woman with a badly damaged spine, a seriously screwed up digestive system, two fake breasts, and a redesigned heart.

As for the digestion, acid reflux, left untended for a lifetime, can make a mess of your innards. If you have a reflux problem, you might want to deal with it before it deals with you.

Now, speaking of my heart, I have one. No small miracle, that. My pacemaker is metal, so I can’t have an MRI … which for some reason the medical staff of my local hospital refuses to believe, even though it’s not as if I have a reason to lie about it.

Also, to go with the spine, I have fibromyalgia. Spinal arthritis (there was a surgery involved there, too) is bad and fibromyalgia goes with serious arthritis like the horse goes before the cart.  I deal with it. I deal with everything. There’s so much to deal with sometimes, I wonder how I find time to deal with anything else.

Weirdly, you get used to it. Impossible though it seems, you learn when you are going to have a bad day. On those days, you rest. Listen to audiobooks or read. Process photographs. You do not go for long walks or explore the wilds.

I also understand that even had I not had such a long run of ill-health, I would be getting on in years, so I’d be dealing with something. It’s just one of those things. A few people enjoy brilliant health from birth to the end. Others of us? Not so much.

For all that, I do feel better. I can walk. I have some kind of MS that mostly affects my eyes but is in remission. I don’t seem to have any sign of renewed cancer. I had it twice so I’m hoping that was all of it.

There’s not much more they can do to my heart except change the battery in the pacemaker and no surgeon wants to do anything to my back. As long as I can walk, no one will touch it.

I have a heart. It works. It’s extraordinary what they can do to fix us these days.

Absolutely astonishing.

HACKING YOUR HEARTBEAT

You thought this was a creepy, personal fantasy.
It turns out to be real. I told’ya, didn’t I?


FDA recalls close to half-a-million pacemakers over hacking fears


Turns out former Vice President (and erratic shooter) Dick Cheney was right all along: Your heart can be hacked. At least if you have a pacemaker, that is. On Tuesday, the FDA recalled 465,000 of the medical devices — the ones that help control your heart beat — citing security vulnerabilities. The pacemakers, which come from health company Abbott (formerly St. Jude Medical), require a firmware update. Fortunately, it can be installed by a health care provider in just three minutes. The models affected include the Accent, Anthem, Accent MRI, Accent ST, Assurity, and Allure.


EPISODE: NCIS – NEED TO KNOW (2012)


Tamer Hassan guest starred as Arms Dealer Agah Bayar.

Tamer Hassan guest starred as Arms Dealer Agah Bayar.

Alan Katzenbach, a lawyer, waits for Gibbs with his client, a chief petty officer named Leland Wiley. Wiley was busted for drugs and wants to trade information he has — which he claims involves national security and Agah Bayar, the arms dealer.

Gibbs is interested. Wiley comes over to talk, but grabs his heart and drops to the ground.

Gibbs comes for the update from Ducky. Turns out, Wiley had top security clearance and his workstation is locked down. They haven’t been able to connect him to Bayar yet.

Abby calls Gibbs to the lab. She tells him Wiley’s pacemaker was linked into a computer to monitor it. Someone hacked it and raised his heart rate up to more than 400 beats per minute.

“Somebody murdered Wiley by remote control,” she says.

What does this have to do with me?

Well, I’m glad you asked. This particular episode so intrigued the heart surgery team at Beth Israel Deaconess in Boston where a group of surgeons wanted to see if it COULD be done. Can you “attack” a pacemaker by remote control? One of the people that performed this experiment was my surgeon.

They did it, though my surgeon pointed out you had to be no more than a couple of feet from the pacemaker to do it. But you could do it. So, they contacted the manufacturer who changed the programming to protect it from potential attack. Cool, yes?

 


NOTES:

I had all that heart surgery in March 2014, not 2013 (how soon we forget) — which I now know was 2014 because I have implant cards to tell people what spare parts are in my body. Unfortunately, none of them indicates which part is which — which ones are implanted heart valves and which one is the pacemaker. Just trying to find out if my pacemaker is being recalled. I mean, my car is being recalled, so why not my pacemaker?

I also had one transplant card for each breast, but that one seems to have gone missing. Oh well … I believe that number is imprinted on the silicon baggies, so I’m sure they will find it as needed.


In theory, nobody can hack my pacemaker because the surgeons fixed it back in 2012. I am safe from remote terrorists. Which is good, because worrying about it was keeping me up at night.

I find it oddly comforting. Garry finds it disturbing. I suppose I can see where he’s coming from. He doesn’t like thinking about the mechanical and electronic stuff that keeps me alive. It would creep me out too, but I’m a bit of a geek and can detach from it on a personal level and get into the coolness of the electronics.

It is  kind of creepy. However, it doesn’t matter. No matter how I feel about it, I’ve got this thing in my chest. It keeps my heart beating. If my heart beat on its own, I wouldn’t need the pacemaker.

Every time I go for a pacemaker checkup, they use a little machine and briefly stop the pacemaker to see if my heart will beat without it. My heart stops beating. Talk about creepy. It is an icky feeling. Anyone with a pacemaker knows what I mean.

The blue tooth remote functions work. They are (in theory) more secure than they were before the NCIS episode aired and the guys got curious. Remote functionality is important. After all, I might need a remote tune-up. Blue tooth lets my doctor access my pacemaker from … how far? I don’t actually know. A considerable distance, whatever that is.

Garry — again — doesn’t want to know about it. I pointed out if someone murders me, this is potentially important evidence. He would rather not think about it.

So there we are. Too creepy?

I can feel my pacemaker. It’s in the hollow by my left shoulder. The outline is visible. I can feel the wires, the connections through my skin. It’s impossible to ignore. I might as well find it interesting. It’s part of me, after all.

HACKING THE PACEMAKER

EPISODE: NCIS – NEED TO KNOW (2012)

Short Synopsis:
Tamer Hassan guest starred as Arms Dealer Agah Bayar.

Tamer Hassan guest starred as Arms Dealer Agah Bayar.

Alan Katzenbach, a lawyer, waits for Gibbs with his client, a chief petty officer named Leland Wiley. Wiley was busted for drugs and wants to trade information he has — which he claims involves national security and Agah Bayar, the arms dealer.

Gibbs is interested. Wiley comes over to talk, but grabs his heart and drops to the ground.

Gibbs comes for the update from Ducky. Turns out, Wiley had top security clearance and his workstation is locked down. They haven’t been able to connect him to Bayar yet.

Abby calls Gibbs to the lab. She tells him Wiley’s pacemaker was linked into a computer to monitor it. Someone hacked it and raised his heart rate up to more than 400 beats per minute.

“Somebody murdered Wiley by remote control,” she says.

What does this have to do with me?

Well, I’m glad you asked. This particular episode so intrigued the heart surgery team at Beth Israel Deaconess in Boston (where I had all that heart surgery in March 2013), that they decided to see if it really could be done. Could you “attack” a pacemaker by remote control? One of the people that performed the experiment was my surgeon.

They did it, though my surgeon pointed out you had to be no more than a couple of feet from the pacemaker to affect it. But you could affect it. So, they contacted the manufacturer who changed the programming to protect it from potential attack. Cool, yes?

In theory, nobody can hack my pacemaker. I am safe from remote terrorists. Which is good, because worrying about it was keeping me up at night.

I find it oddly comforting. Garry finds it disturbing. I suppose I can see where he’s coming from. He doesn’t like thinking about the mechanical and electronic stuff that keeps me alive. It would creep me out too, but I’m a bit of a geek and can detach from it on a personal level and get into the coolness of the electronics.

RBB-pacemaker

It is  kind of creepy. However, it doesn’t matter. No matter how I feel about it, I’ve got this thing in my chest. It keeps my heart beating. If my heart beat on its own, I wouldn’t need the pacemaker.

Every time I go for a pacemaker checkup, they use a little machine and briefly stop the pacemaker to see if my heart will beat without it. My heart stops beating. Talk about creepy. It is an icky feeling. Anyone with a pacemaker knows what I mean.

The blue tooth remote functions work. They are (in theory) more secure than they were before the NCIS episode aired and the guys got curious. Remote functionality is important. After all, I might need a remote tune-up. Blue tooth lets my doctor access my pacemaker from … how far? I don’t actually know. A considerable distance, whatever that is.

Garry — again — doesn’t want to know about it. I pointed out if someone murders me, this is potentially important evidence. He would rather not think about it.

So there we are. Too creepy?

I can feel my pacemaker. It’s in the hollow by my left shoulder. The outline is visible. I can feel the wires, the connections through my skin. It’s impossible to ignore. I might as well find it interesting. It’s part of me, after all.

I’M JUST FINE. THANKS FOR ASKING.

BLAST FROM THE PAST:

A mere two years after a double mastectomy, I’m facing another medical crisis. I’m not handling it gracefully. Too many crises. Dozens of surgeries. I can’t bore you with details; I have, thankfully, forgotten them.

Fake breasts

I’ve spent more time in the hospital than most interns. I’m a professional patient with the scars to prove it. When I die, they should stuff me. Put me in some kind of museum proving with enough medical attention, even the totally unfit can survive. Each doctor who redesigned some portion of me can tattoo his signature along the appropriate scar, assuming all the doctors are still alive. Probably they aren’t because I started my career on the wrong side of medicine while still a teenager and apparently am not due for retirement anytime soon.

I need a new mitral valve. I used to joke and laugh, saying the only major system in my body that continues to work is my heart. I laughed too soon. Probably jinxed myself.

I go into each surgery with fear and resignation. I know how I’m going to feel when I wake up from the anaesthesia. I will hurt. I will be sick and disoriented. I will realize I must have survived because I’m aware how totally miserable I am. Again.

Last time I woke up and the first thing I did was look down at my chest to see if I had a semblance of breasts. I did. Lumpy, not flat. Though I knew they weren’t original equipment, I was comforted by the familiarity of the landscape. With all the pain, drains and anger at my body for betraying me, it was nice to know I would at least appear — on the surface — female.

75-BostonView__09

View of Boston and Fenway Park from the Baptist Hospital

That was when I said: “Never again. I’m never going through this again.”

I should just shut up. How stupid am I? I can’t remember how many times I’ve woken from that weird deathlike anaesthesia sleep and have fought my way back up to the light. Each time, just a little weaker, a bit less sure of the future — but alive. Hanging on.

Lobby of the Dana-Farber in Milford

Lobby of the Dana-Farber in Milford

It’s too soon. I’m not ready. Maybe this time the magic won’t work. My first husband died following complications of mitral valve replacement surgery. I watched him die. After the surgical accident that killed his brain, he remained technically alive, but in a vegetative state for 9 long months. I took care of something that looked like him, but whose eyes were empty. When finally he passed completely, I and the rest of his friends gratefully wished him well on a journey he should have taken nearly a year before.

Probably no surprise that this particular surgery holds a special terror for me.

Less than two years since I vowed “Never again,”  again has come. I suppose I’ve already made the choice to let them fix me, or try anyhow (does “or die trying” sound too ghoulish?). The alternative — slowly dying while my heart becomes less and less able to pump blood — doesn’t sound attractive. An attractive option does not seem to be available. But, there’s no advantage in waiting. I won’t get younger or healthier. The older I get, the more dangerous surgery is.

75-UpwardsNIK-31

Glass shaft at the Dana-Farber.

I gave myself a little gift of time. I put off my appointment with the surgeon until the beginning of September. I need to get my head into a better space, to settle down emotionally. A few weeks of denial before I tackle another scary reality.

So for the next three weeks If you ask me, I will tell you. I’m just fine. Thanks for asking.

NEED TO KNOW (NCIS, 2012) AND MY PACEMAKER

EPISODE: Need to Know (2012) – SHORT SYNOPSIS:

Alan Katzenbach, a lawyer, waits for Gibbs with his client, a chief petty officer named Leland Wiley. Wiley was busted for drugs and wants to trade his info — which he says is about national security. It concerns Agah Bayar, the arms dealer. Gibbs is interested. Wiley comes over to talk, but grabs his heart and drops to the ground.

ncis-need-to-know

Gibbs comes for the update from Ducky. Turns out, Wiley had top security clearance and his workstation is locked down. They haven’t been able to connect him to Bayar yet.

Abby calls Gibbs to the lab. She tells him Wiley’s pacemaker was linked into a computer to monitor it. Someone hacked in and jacked his heart rate up to 400 beats per minute.

“Somebody murdered Wiley by remote control,” she says.


What does this have to do with me?

Well, glad you asked. This episode so intrigued the heart surgery team at Beth Israel Deaconess in Boston (where I had all that heart surgery last March), that they decided to find out if it really could be done. One of the people that performed the experiment was my surgeon.

They did it. My surgeon did point out as far as they could tell, to actually hack a pacemaker you had to be no more than a couple of feet from it. Nonetheless, they made the manufacturer change the programming.

In theory, nobody can hack my pacemaker.

I find this comforting. Garry finds it disturbing and I suppose I can see where he’s coming from. He doesn’t like thinking about the mechanical and electronic stuff that keeps me alive. It would creep me out too, but I’m a bit of a geek.

RBB-pacemaker

I find the technology sufficiently interesting to overcome its inherent creepiness. It is creepy. However, it doesn’t matter. No matter how I feel about it, I’ve got this thing in my chest. It keeps my heart beating. If my heart beat on its own, I wouldn’t need the pacemaker.

Every time I go for a pacemaker checkup, they use a little machine and briefly stop the pacemaker to see if my heart will beat without it. My heart stops beating. Talk about creepy. It is a very unpleasant — and indescribable — sensation. Anyone with a pacemaker knows what I mean.

The blue tooth remote functions still work. They are (in theory) more secure than they were a couple of years ago, before the NCIS episode aired and the guys got curious about it. Remote functionality is important. After all, I might need a tune-up. Blue tooth lets my doctor access my pacemaker from … how far? I don’t actually know. A considerable distance, whatever that is.

Garry — again — doesn’t want to know about it. I pointed out if someone murders me, this is potentially important evidence. He would still rather not think about it.

So there we are. Too creepy?

I can feel my pacemaker. It sits on my left shoulder. The outline is visible. I can feel the wires, the connections through my skin. I find it impossible to ignore. I might as well find it interesting. It’s part of me, after all.

MONEY CAN’T BUY IT

I don’t envy much. I’ve never needed the best house, the fastest car. Fashion doesn’t tempt me and success for me has always meant having enough. Spare would be nice, but enough will do.

Buds

I don’t need popularity. A really good friend and some companionable other acquaintances is more than sufficient.

But you, over there? Yes, you. The youngster, with your flexible body and the spring in your step. I bet you can sleep a whole night without having to take “something for the pain.” I bet you still have all your original parts too. That must be really nice. A spine that isn’t encrusted by calcification. A digestive system that will handle whatever you throw into it … and at your age, probably that’s all sorts of weird stuff. I hope you get over that soon. Stomachs are important. They don’t stay tolerant forever.

And feet! Oh, how glorious! You can run, jump, walk. And your eyes are clear and lovely. You can focus your camera too.How delightful. I remember when I could do that.

It’s not real envy, I guess. That would imply I think you’ve got something I might want to take from you and make my own. Which isn’t true. You are young and healthy. Your beauty is your vitality and the joy I see you take in the simple acts of daily life. To say I envy that is true — in a way — but more as if I’d like to turn back my clock. I would give anything short of life itself for a single day of being completely healthy and pain-free. I would carry that memory with me for the rest of my life. I’d treasure it.

CornGrowing300sz72

I hope you treasure what you have. I didn’t realize how much it could change. I never expected to be what I am now. In my imagined future, I was just as you are now, but maybe with a little gray in my hair. Otherwise, I’d be perhaps a bit slower. But still me.

So that’s it. I want just a day as I was to remember how it feels to walk with a spring in my step, eat an ice-cream, run across the grass, ride a horse.

Treasure what you have, young woman. It’s worth more than gold. If it goes away, no earthly treasure can buy it back. Take care of yourself. Hoard your riches. You’ll need them on the long road ahead.

How did your doctor’s appointment go?

I haven’t really processed the news yet. That my leaky mitral valve has gone from no big deal to seriously deteriorated probably shouldn’t have surprised me. Nothing should surprise me. Maybe surprise is the wrong word.

Bummer. That’s the word. The heart seems to be pumping okay (the good news) but the leak is very bad (not good news). About that surgery? No, thank you. Did I ever mention that my first husband died of complications following valve replacement surgery? If not, yes he did and that long and horrible death included 9 months in a vegetative state. It was not pretty.

Heart2

I have had so much surgery I can’t remember all of the operations anymore. I cannot list all of the body parts that have been remodeled, removed, renovated, revised or replaced. Last week they offered to remove a few small bones from my hands so they would work better and hurt less. Today, they offered to take my heart apart and repair that.

That’s it for me. I’m done. I cannot go through another major surgery.

I don’t know what this means for my future but since I’m mostly asymptomatic, I have nothing to lose by doing nothing. Wait, monitor, wait some more.

So how did my doctor’s appointment go? I never made it to the second one because I was so bummed by the first one. I needed an immediate infusion of best friend and some time hiding in my office playing mindless games which let me not think.

What ever original equipment I have left body-wise, I want to keep. I am not ready to deal with this. Not yet. Maybe not ever.