Backscatter Scanners and Pacemakers

As you may remember, I almost flew to Atlanta for the recent Heart Walk, but changed my mind when my parents decided to attend, too. While getting my gear organized for the trip I thought about the new “Backscatter” full body X-ray scanners being installed in airports: how do those things interact with pacemakers? The Transportation Security Administration (TSA) recommends that those of us with Pacer Power avoid the metal detectors, and since I got my pacer I’m not cool around large magnets. After all, the doctors use a magnet to set my pacemaker; it stands to reason that another magnet could scramble it! So I pull out my plastic card and tell the TSA agents that I have a pacemaker and request a hand patdown, and just avoid all that.

But what about the new scanners? Friend or foe? Not knowing, I called my pacer lab. The short answer: We don’t know.

The longer answer: There hasn’t been any testing done on pacemakers yet. It’s not really safe to get a human volunteer to test the scanner (“We don’t think anything well happen, Fred, but just in case… sign this release form.”) so the next best plan is a series of tests, usually involving calibrating a pacemaker, taping it to a mannequin, and sending him through a scanner – simulating what would happen to a traveler who happens to have a pacemaker.

If the pacer checks out, you run the test again, and again, and again, to see if going through the scanner multiple times will affect the pacer. Then you run the test yet again – with longer scans and higher radiation levels, to see if that affects the pacemaker. And you keep repeating these tests to eliminate the possibility of a fluke reading.

Wow, that’s pretty involved. It would probably be better if we could borrow a scanner for a few weeks, but I doubt that is going to happen. TSA like to keep things close to the vest, and I bet that goes double for their newest secuity tool. So I figure that the best thing to do if you have a pacemaker is not to risk it – just keep asking for a hand search.

Thankfully, my home airport is so small that they only have three gates. It will be quite a while before they get a Backscatter scanner!

When the light fades

With new life extending technology comes new ethical questions – often not can you take advantage of it, but should you? A recent report by the Heart Rhythm Society offered detailed guidelines concerning shutting down a pacemaker or Implantable Cardioverter Defibrillators (ICDs) near the end of life. The purpose of the document is to outline the rights and responsibilities that patients, family, and caregivers have. Fully 10% of doctors may feel that deactivation of a pacemaker – even at the request of the patient or their family – is wrong.  (The percentage that see ICD shutdown as wrong is 1%, as an ICD can be changed to “pacemaker only mode”.)

A recent Mayo Clinic study found that withdrawing a Left Ventricle Assistance Device (LVAD) was ethical, if the patient (or their surrogate) recognized the eventual outcome of such an act.  While a heart may be strong enough to continue beating for a while without a pacemaker, shutting down a LVAD is an extremely serious step. The LVAD is a pump, and the heart is a pump; the only reason to hook a pump to a pump is because the first pump can no longer do its job. Death could come fairly quickly after LVAD shutdown. The writers of the Mayo Clinic study contend that turning off a LVAD (or refusing it altogether) is not physician assisted suicide or euthanasia.

But why would someone want to deactivate a pacemaker or LVAD? There are many illnesses that steal the body while leaving the Circulatory System functional. A stroke or Alzheimer’s can leave you incapacitated while your heart beats on. Or perhaps you have reached the end of your life, and your heart just can’t go any further, so it shuts down…. only to be zapped back to life by an ICD. Blogger Dr. John M. notes that things change, life changes – and occasionally he has to tell a patient “Sir, an ICD will no longer help you.” And Dr. Wes is there as a gentleman plays the last few notes of his life’s song.

80% of all Americans will probably die of an incurable chronic illness. Most of those people want to die at home, with as much dignity as possible and as little pain as possible. I plan to fight for as long as I can stand – Rage, rage, against the dying of the light! But in the back of every CHDer’s mind is the knowledge that one day our hearts will give out… and it will probably happen slowly.

Our light will fade away rather than being snuffed out.

Pacemakers without batteries

My pacemaker battery wears down pretty quick. Not because I am that active (What do you mean, you don’t chop down a dozen trees with a steak knife every morning?!?) but because of a combination of things. I am “100% paced” – meaning my pacemaker is on the job all of the time.

Also, my pacemaker is not in my shoulder. Usually the controller unit is in your shoulder with the leads traveling down the Superior Vena Cava into the heart. (CLICK HERE for a diagram of the standard pacemaker placement.) So my pacemaker is in my abdomen with the leads leading up through the Inferior Vena Cava.

As you look at that pacemaker diagram, you see that the pacemaker leads extend down into the Right Ventricle. That’s not happening in my heart – remember, with Tricuspid Atresia you don’t have an opening where the Tricuspid Valve normally is. So my pacemaker leads end in the Right Atrium, and the pacer needs a bit more of a “Jolt” to push my heart along. So I usually have to get my battery replaced every three to four years.

The initial surgery is hard, they do have to cut you open. The replacement is easier – they make a two-inch incision above your control unit, disconnect the leads, and remove it. Then they attach the new unit, test it, and if all is well they sew you up. Long time readers will remember that my doctors are worried about what might happen if I am put to sleep, so they give me a sedative. I call the sedative Happy Juice for a reason: I’m awake and can talk (and make pretty good sense!) but I am flyin’. Let me tell ya, Happy Juice is some good stuff, and next time I’m going to ask for the recipe!

Of course, the Happy Juice will wear off in a few hours, and then I won’t be quite as happy. So before I was discharged the Outpatient OR gave me a prescription for some painkillers, and that is when the trouble started.

Sometimes ordinary things cause the strangest reactions in people. I have a friend who will not drink Orange Juice – it makes him hyper! A small glass of OJ hits him like a sugar rush, and you almost have to sit on him to get him to be still! Now usually, meds work the way they are supposed to when I take them, but this painkiller never killed any pain… all it did was make me sleepy.

Ugh. Sleepiness wasn’t helping, because I was hurting so bad that I couldn’t lie down or sit up without help. And because the incision was in my abdomen, I couldn’t even roll over. I was trying to sleep sitting up in a straight-backed wooden chair, and a local ER doctor wouldn’t help me. Apparently he thought I was trying to work the system, since his advice was to “grow up.” I had to go back to my Cardiologist in Atlanta to solve this problem.

Thankfully he’s seem me enough over the years to realize that I wasn’t kidding around or trying to scoop some free drugs. He changed the prescription and for the first time in a week, I could lie in bed and sleep.

At one of my worse moments I declared (loudly) that if getting the pacemaker changed was going to hurt like this, then the next time I would just let the battery go dead and take my chances. Thankfully that was just the pain talking, I haven’t lost my sanity. But maybe I can get lucky and get one of those new pacemakers that generates its own power!

Researchers at Princeton University are working on a flexible rubber sheet that can power a small electronic device. The rubber sheet is coated with ceramic nanoribbons and generate energy by movement. In theory, a pacemaker control unit could be placed near a lung (the two current pacemaker placement locations – shoulder or abdomen – should do the trick) and as you breathe, the motion of your lungs would generate the power needed to operate the device.

Meanwhile, they are taking a slightly different approach at the University of Michigan. Tiny generators can “capture” motion and use them to generate power – more than enough to power a pacemaker. This really isn’t new: There are already “Self-winding” watches that create their own power from the back and forth motion of our arms as we walk. This generator can use vibrations from smaller, less rhythmic motions to create their power. The problem right now is energy storage – the research team needs to find a way to store the power generated for the times when motion is low. I know that I would hate for my pacemaker to run dry just because I was sleeping!

All joking aside, I would love to have one of these pacemakers. Even though it is a simple operation and (usually) there isn’t much pain involved, a pacemaker replacement is still a surgical procedure. And as a wise man once said, “Minor surgery is any surgery that they do to someone else!”

Are you Iron Man? Nope! Just a Funky Heart!

This originally came from Salon.com, but I found it on Dr. Wes’ blog:

Iron Man’s powers are generated from an implant designed to keep his weakened heart from failing. Of course, there are differences in our individual circumstances. Tony Stark, the man beneath the Iron Man armor, designed his own implant in an effort to save himself from a piece of shrapnel traveling to his heart. Not only that, he created the device using material provided by his unwitting captors (Asian Reds in the original “Tales of Suspense” comic; Middle Eastern terrorists in the movie). I am not nearly that clever; my device was built by Medtronic, a Minneapolis company that was started in a garage and is now the largest medical device company in the world. We have so much in common, and yet I have so many things to learn from him. Sure he’s a little smoother in social situations, and better connected, yet at our core we share something rare. We are both cyborgs.

New ICD moves leads, reduces chance of infection

Implantable Cardioverter Defibrillators (ICDs) are cool. For people who are prone to tachycardia, V-Fib, or other rhythm disorders, it could be a lifesaver. An ICD is like having your own medical team with you all the time. The moment there is trouble they get out the paddles, shout “CLEAR!” and give you a life saving jolt. And very few people have to know you even have one.

But in most cases, the patient population for new ICD are older citizens. This 2007 clinical trial specifically tested the efficiency of pacemakers in patients that were 75 years old or older. But what about us younger folks who need an ICD? They usually aren’t recommended for the youngsters.

One of the potential problems are the ICD leads. The wires that run from the ICD have to go into the heart and connect inside of the heart muscle to deliver the shock if one is needed. Leads have to be strong, but flexible. You can have one or the other, but usually not both. At the Broken Hearts of the Big Bend Regional Forum on Congenital Heart Defects I attended in February, electrophysiologist Dr. Randy Bryant  said that most children who have either a pacemaker or an ICD needed to have their leads replaced. One of the more common reasons for the replacement is the Belly Flop into the swimming pool. Leads seem to have difficulty dealing with that!

And every time you change a lead, you run the risk of giving an infection a chance to get inside the body. The odds are low, but toss the dice enough times, and you’ll finally roll snake eyes.

And leads can just, for lack of a better word, wear down. They have to be connected to a certain spot inside of a muscle that is constantly in motion, with an owner who could turn, twist, or bend in any conceivable direction. As Dr. Martin Burke, Director of the Heart Rhythm Center at the University of Chicago Medical Center puts it:

“It’s a 98.6 degree, dynamic environment that pumps like a piston 60 to 100 times a minute; it’s a miracle they last 15-20 years in my mind.”

Burke has been part of a team that has tried to rethink the Defibrillator, take a good idea and make it even better. It looks as if they may be onto something: An Implantable Cardioverter Defibrillator (ICD) with leads that are not in the heart, but rather just below the skin. Putting the leads just below the skin (they don’t even go beyond the breastbone) means that the ICD has to deliver a shock that is two and a half times more powerful that the average ICD. But the computer that controls the ICD has also been improved. It can better detect heart rhythms that are unusual but not dangerous, and deliver fewer shocks.

The new Defibrillator (which is known as the S-ICD) has just entered clinical trials, so you won’t be able to go to your doctor and demand one. But in the future, hopefully it will become a common tool for CHDers and other heart patients.

The Devil’s Drug

Woe to the CHDer who develops an arrhythmia. (irregular heart beat) The problem is, it seems we all develop one sooner or later, and the choices we have to combat it are limited. Certainly pacemakers and ICDs are available, but those are expensive. So is an ablation; so often, we start with a drug regimen.

One of the best Antiarrhythmia drugs is Amiodarone, because it can control the irregular beats fairly well and there is less of a chance of a proarrhythmia. A proarrhythmia is a new or more frequently occurring arrhythmia that is triggered by the use of antiarrhythmia drugs. It’s diabolical – using the drugs that can calm down an irregular heartbeat can actually cause more irregular beats!

Oh, boy.

Amiodarone is pretty good about not causing proarrhythmia, but that is probably it’s one positive factor. Dr. Rich is convinced that Satan himself invented it – it’s that nasty!

For the drug to become effective, it has to saturate the body. So at first you are given a “loading dose” – a high dosage of the medication to get the patient to the proper level of the drug in their blood quickly.

Most of the time a drug is eliminated through the bloodstream, taken to the kidneys where it is filtered out, and the eliminated through the body’s natural waste disposal system. Not Amiodarone, no sir. The only way you get rid of it is by getting rid of cells. That’s a naturally occurring process, but it is slow and you can’t speed it up. Sometimes it takes a year for the Amio to completely clear your system.

And while it is in your system, it sets up shop in every organ of your body.

Possible liver damage? Yep!

Possible lung damage? Got you covered!

Thyroid damage? Amio is on top of that, too! In fact, you know that rough spot on the bottom of your left foot… well, you probably can’t blame Amiodarone for that one.

But every year you are on the drug, you’ll be visiting your eye doctor for an examination. Not the usual eye exam, mind you, but he’ll be looking for deposits in your eyes caused by the drug.

And you’ll have a lung function test every year, also. You’ll sit in a small walled in area that looks like a phone booth with a plastic tube in front of you. You’ll be asked blow as hard as possible into the tube, blow, blow, come’on empty your lungs! Then you’ll inhale as much as possible; you’ll hold your breath then blow it out – several different lung exercises. You’ll want to bring a friend with you – there’s no reason that you can’t drive home yourself, but you’ll be exhausted from the exercises. And they’ll repeat this test every year to make sure that your lungs aren’t being damaged by the Amiodarone.

If you haven’t guessed, this stuff isn’t very usuer friendly. There are newer drugs available that do not cause proarrhythmia (Yay!) and do not have the side effects of Amio (Yay again!) but isn’t as effective. (Aw, man!)

So if this drug is recommended to you by your doctor, you probably do need it. But have a long, honest discussion with your physician about the benefits and side effects of Amiodarone.

HOME!

It always seems to take longer to come back home than it does to go to Altanta. The situation was aggrivated by the weather today – cold and windy with rain (and a snowflake or two spotted while passing through Monroe, Georgia!)

My appointment went very well! My pump is pumping, my pacemaker is pacing, and all is right in my world. Once again, it looks like the best thing that could have happened to me was not getting the Fontan. Everything is funtioning quite well without it.

We’ll talk more later, right now I am road weary. So I’m calling it a night!

Wireless Pacemakers are coming!

“In five to ten years,” Dr. Randy Bryant, a Pediatric Electrophysiologist told the audience last Saturday morning, “we should be able to offer a wireless pacemaker.”

WHOA! Anyone who has ever heard the words “broken lead” knows that the  only one way to replace a pacemaker lead is surgically. You have to be cut open (again!) and have the broken lead removed and replaced. And with their active lifestyle, children can be especially hard on their pacemaker leads.

As Dr. Bryant said, wireless pacemaker technology is not available yet. But wireless monitoring systems are coming into use – including a portable, wearable, and practically invisible ECG monitor.

Corventis recently won approval to market their new NUVANT Mobile Cardiac Telemetry (MCT) System. NUVANT uses a cardiac monitor that appears to be about four inches wide and transmits to a receiver on the patients waist. The reciver then transmits the data to a monitoring center. After that, the data is relayed to the patient’s doctor. Using NUVANT, someone could have their heart monitored from anywhere in the world without interfering with their daily activities.

The XPECT clinical trial was a look at an early implantable wireless heart monitor, designed to detect Atrial Fibrillation (AF). The recorder was surgically implanted in 247 patients, and after a few weeks of healing, the monitors were turned on. Patients also wore a Holter Monitor as a “backup” for comparison purposes.

The test went well. When the new implantable wireless monitors were compared to the more traditional Holter Monitors, the implants detected an AF rhythm 96% of the time. There are limitations with the implantable monitors, but this was a succesful test.

Those wireless pacemakers may be a little closer to reality than we all thought!

CSI:Pacemaker

“I tend not to believe people; they lie. The evidence never lies.”  – Gil Grissom

According to the old saying, Crime does not pay. Here’s a good example: Two bodies were dumped in a Forest Preserve in Indiana. No witnesses, and very little evidence. Yet police were able to identify one victim through information provided by his pacemaker.

That pacemaker, you see, has a serial number encoded into its memory. The pacer was scanned by a monitoring device (the same one your pacemaker lab has in their office!) and everything the police needed to know was on the printout. The serial number was matched to the master list of pacemakers maintained by the manufacturer, and that was matched with the owner’s name and address. It’s the system they use to contact you if those pacemakers are suddenly recalled. Also on the pacemaker was information related to its job of keeping the heart in rhythm. Analyzing the data gave them the exact moment the victim’s heart stopped beating, down to the second.

And hopefully that pacemaker information can be used to send a killer to jail.

Traveling the extra mile

So where do you get your medication?

Heart Parents and Heart Warriors know our pharmacy like we know the backs of our hands – it seems that we almost live there! It seems no matter how hard we try, there’s just no way to get everything coordinated. Everything runs out at different times, and with eleven different drugs, it seems that I am at the drugstore two or three times a month. So you may be surprised to learn that I travel 68 miles (one way) to fill my prescriptions.

That’s a pretty nice trip, and yes, there are drug stores that are closer. As you may guess, there’s a reason I travel that far.

In the summer of 2002 I was a patient at Emory University Hospital after having a pacemaker implanted. I had been in heart failure at my community hospital, they had admitted me and placed me in the ICU until I stabilized. Four days later, things were getting worse and I was moved to Emory. So now I was in Emory’s ICU recovering from the pacemaker implant when I had a small stroke.

They had gotten me up and sat me in a chair, and since I was less than 24 hours post surgery, I wasn’t sat the top of my game. My foot fell asleep; but I figured it was just twisted under me at a bad angle. I certainly didn’t feel like moving it around. A nurse walked by and stopped, looking in my little cubicle. “Smile at me,” she said.

The next thing I know this five foot tall nurse was throwing me back in the bed. “I think you need to lie back down,” she said, and a moment later someone was checking my eyes with one of those little flashlights.

My right side “turned off” for three days – and that is the best way to describe it. I couldn’t feel or move anything on the right side of my body. I didn’t “fight back” – I really couldn’t get my head around it. Stroke? Couldn’t be… all that I knew was that my foot had fallen asleep. I hadn’t felt anything else, no problems breathing, didn’t feel any heart pain or funny beats. Nothing.

Then as suddenly as it turned off, my body turned back on. My doc asked me to squeeze her hand on the fourth morning, and without thinking my brain sent the proper signals to my right hand. And this time it worked!

“Whoa! Do that again!” I could move, I felt pain… it was working but it was like my system had rebooted. Everything worked, but my right side wasn’t following orders. I was assured that this was pretty normal and that good Physical Rehabilitation could get everything back in working order. I did a week of rehab at Emory- their plan was to get me started on the path to getting better, once that was established I could be transferred to a facility closer to home to continue my rehabilitation.

That day quickly came. I was able to stand and walk just a couple of steps (with help) but they helped me out of the wheelchair and into our van. Emory’s Rehabilitation Unit and one of their “Ambassadors” (Social Workers) had been in contact with The Big Rehabilitation Hospital close to home, and they had my records, knew that I was “medically fragile”, and were prepared to evaluate me and make a rehab plan. I’m only going to identify them The Big Rehabilitation Hospital (TBRH) and that’s all – you’ll see why in a moment.

We got to TBRH and dad dropped me and mom off – he was going home and make sure all was ok, and check on our house and the pets before returning to pick us up. The nurse who met us was friendly and things were going well until she said “Let’s get you to your room.”

Whoa! Timeout… on our end in Atlanta, we were under the impression that there was going to be an evaluation and then the plan would be decided. No one had said anything about being admitted as soon as we arrived.

“Oh, we received your records and looked them over, it’s all planned out!” At the same moment she’s pushing my wheelchair towards my room. Hold  on, wait just a moment… you guys understand that my docs want –

“We’re TBRH, we cure everybody! You’ll be in good hands!”

We wanted her to slow down, take a breath, listen to us – we had been told about this evaluation (which we assumed that we would be a part of and have some input into) and told to take it nice and slow until the pacer incisions were healed, and this nurse was talking about hitting the ground running. And her response to everything seemed to be “We’re TBRH, we can cure anybody!”

“Wait just a damn minute!” – that had come out of my momma’s mouth! “We want to talk to a supervisor.”

The nurse looked a bit miffed but did as we asked, and it wasn’t very long before the supervisor appeared. He listened, but I had already been evaluated – sight unseen. As soon as my medical records had come in, they had put me on a rehab track –

That’s it, I said. My voice wasn’t working very well because of the stroke, and it took me a long time to say even a simple sentence. It sounds like I’ve been placed on a preplanned course of treatment. That worries me.

Well, you don’t have to stay here if you don’t agree with our policies, he said.

That’s what we’ll do. When my dad gets back we’ll go home, and I’ll call my Cardiology team. If my doctors say this is OK with them, we’ll come back here.

Well, you can’t come back tomorrow, he said, no one will be in the front office. You can lose track of time in a hospital pretty quickly; it took me a moment to realize that the next day would be July 4th.

We figured a little over an hour for dad to get home, about 30 minutes to check everything and feed the animals if they needed it, and an hour back. During the time he was gone, the nurse brought dinner in for my almost-roommate.

“Since you aren’t a patient here, we don’t have anything for you,” she said. That very well could have been the rules or a TBRH policy, but the way she said it sounded a lot like two can play this game, bub. Or I could have just been overly sensitive after the “evaluation” confusion.

Dad got back and we told him the entire story. “Do you know if he has had his evening medications?” Dad asked the nurse.

She shook her head. “TBRH does not provide drugs to non-patients.”

The next thing I know, I’m back in the van and we are burning rubber for a big box retailer about a mile away. I didn’t even get out of the van – how could I, I was barely moving – but my parents rushed in and got to the Pharmacy counter about 3 minutes before closing time.

“I need to get fourteen different medications for my son, who was released from the hospital today. Can you help me?” (I wrote eleven at the top of the page; thankfully I’ve been able to drop a few since this happened).

“They didn’t prescribe the drugs?” the Pharmacist asked, incredulously.

“Not their policy,” Daddy said, skipping the long explanation.

“No problem,” the druggist answered, even though she was just moments from the end of her day. And that is why we travel almost 70 miles to fill my prescriptions… because they were willing to help when I needed them.

I debated if I should write this post or not – it’s human nature to present yourself in the best light possible, especially if you are the one telling the story.  We don’t look very good, and neither does TBRH. I could have been confused , tired, still not thinking right because of the stroke, or just plain wrong. Maybe a little of each. It’s been seven years and I still don’t know.

But the Pharmacy did go Above and Beyond the call of duty, and it is really appreciated. Thank you for helping a customer!