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!

Balance

My Congestive Heart Failure (CHF) is worse.

I think the problem is correctable. When I was having the Gout flare-ups a few months ago, my Cardiologist took me off of one of my Diuretics. One of the side effects is that it can cause Gout, and I haven’t had very many problems with the Gout since.

But recently I’ve noticed swelling in my ankles, a constant cough, and I feel run down most of the time. So I asked my Cardiologist for permission to start taking that drug again… every other day. That ought to be frequently enough to help me, without causing the Gout.

With a heart defect everything seems to be a balancing act. We discontinued the drug to keep the Gout at bay, but it seems that I’m feeling worse. So I’m taking it again – at half the dosage I was originally taking it. So if my self-diagnosis is correct and resuming the drug will straighten me out, it will take twice as long for it to work (since I’m taking half the dose). If it doesn’t seem to be the solution, I’ll have to talk to my Cardiologist again, and we’ll have to figure out a Plan B. And there is always that thought in the back of your mind: What if Plan B doesn’t work? Plan C might, but even if it works wonderfully, that’s one more option off the table.

Stay hydrated… but with your CHF, don’t drink more than 2000 millilitres (2 liters, or 67 US liquid ounces) per day. Normally that’s more than enough to drink, but what if I pick up a stomach bug that keeps me in the bathroom constantly? Then you can break the 2000 ML rule – but be careful! We don’t want to start having too much fluid in you. You also need to limit your salt intake to no more than 2000 milligrams per day. But when you get that stomach bug, Oral Rehydration will help tremendously… and Oral Rehydration is mainly (you guessed it!) water mixed with sugar and salt.

The goal is to try to keep everything in balance, to give your medications the best opportunity to help your body. If your doctor says to exercise, do so. (I’m one to talk! I have walked very little since hurting my knees in my July fall.) Don’t just fill a new prescription, question the doctor about the medication. What is it supposed to do? How will it help me? And what side effects should I look out for?

And be sure to ask the most important question: What can I do to help myself?

On the cutting edge

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

A new blog!

Mary Knudson is a health journalist, good enough that she has been a writer for The Baltimore Sun and teaches science and medical writing to grad students at Johns Hopkins University. Her new blog about living with heart failure opens with the sentence:

I got to know something about heart failure the hard way, by having it.

Heart failure affects millions of Americans, including me. The odds are that you (or someone you love) will have to deal with it, eventually. But as grim as it sounds (Oh my God, Heart Failure! My heart has failed!) it is survivable and you can live with it. Mary is – and she’s learned enough that she’s written a book, along with Johns Hopkins Chief Cardiologist. The blog is an offshoot of her book.

The first entry is a story that many Congenital Heart Defect patients and their parents are familiar with: a misdiagnosis and a roller coaster ride to figure out what is really going on. Mary’s heart failure blog is the feature today and will move into the blogroll tomorrow.

TELL HIM WHAT HE’S WON!

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!

No more heart transplants?

Will heart transplants one day be a thing of the past?

I think the answer is yes – one day. Not today, and certainly not tomorrow. But there are a lot of options being worked on that hopefully one day will help patients avoid a heart transplant. One of these we have discussed before: The Ventricular Assist Device, or VAD. The VAD is a small pump that is surgically implanted into the body and connects the ventricle to the Aorta. Technically, they can assist either ventricle, but the majority of them are connected to the Left Ventricle, the name “Left Ventricle Assistance Device” and the acronym LVAD are sometime used to discuss any variety of the pumps.

The LVAD was originally thought of as a temporary device to be used to assist a heart until a transplant organ became available, a “bridge to transplant” option. But the units have improved so much that today they are also considered as a permanent implant – “Destination Therapy” that will allow the patient to resume his or her life. With that viewpoint in mind, two important tests have recently begun.

HeartWare International recently won approval from the Food and Drug Administration (FDA) to test their LVAD system as a Destination Therapy device. HeartWare has plans to select 450 patients at 50 U.S. hospitals for the study. Patients must be in “end stage heart failure who have not responded to standard medical management and who are ineligible for cardiac transplantation.” Every patient enrolled in the study will receive an LVAD. Two thirds of them will receive HeartWare’s system, while the rest receive any other FDA-approved LVAD. The study is expected to last at least two years.

Meanwhile, World Heart Corporation is testing its new LVAD, the Levacor VAD. The Levacor VAD unit is being tested as a bridge to transplant only right now, but it is a pretty amazing little machine. The Impeller (a rotor inside the unit; the part that actually pushes the blood through) doesn’t touch anything – it is suspended in place by magnets above and below it. It turns smoother, and since it doesn’t rub against another part it should never wear out. And it is small, too – the unit is about the size of a hockey puck.

The drawback is that both LVADs require battery packs that are outside the body. Unlike pacemakers, no one has been able to implant a LVAD battery unit in the body yet. But I think that is coming, though I can’t predict when.

New gene therapy for Heart Failure shows promise

A new option for combating Heart Failure (or Congestive Heart Failure, also known as CHF) is showing promise as the CUPID Study

Heart Failure occurs with the heart muscle begins to wear out and lose its elastic properties. It isn’t a Congenital Heart Defect (CHD) itself, but a CHD can trigger it as a patient becomes older. And since I have CHF, I’m interested in keeping an eye on it!

The normal heart contains a protein that has a long medical name that I can’t say and can barely type. Thankfully, it is also known as SERCA2a. In a heart going through Heart Failure, the levels of  SERCA2a begin to drop. All is OK for a while, but it is like driving a car without ever checking the oil. You can take care of yourself, eat right, exercise, and write a letter to your mother every week, but if your heart isn’t producing SERCA2a then you’ve got a real problem on your hands. Eventually the CHF wins.

You can’t drink this stuff or take it in pill form. Instead, the gene that makes this protein is inserted into a virus. Not a virus that can make you sick, but acts as a transport mechanism for the gene. The virus (which in its commercial form is called MYDICAR) is inserted directly into the heart by catheter. In the study, there were 39 patients in total and the ones receiving the drug received low, medium, or high doses. And while there were no “adverse outcomes” the results were rather strange. Sometimes patients had the best response to lower doses of the enzyme. That really doesn’t make any sense.

It does look promising, if they can figure out why some people respond better to lower doses of the therapy. But this was a Phase 2 clinical trial studying a limited number of patients. We’ve got a few years to wait before this becomes available.

Tougher than a salt shaker!

Remember: Grand Rounds hosted on Adventures of a Funky Heart! June 15, 2010! Entry guidelines are HERE.

I hate salt.

Actually, I love a little salt; but salt doesn’t like me. I have Congestive Heart Failure (CHF), which is caused when the heart muscle weakens to the point that it has difficulty pushing the blood through the body.  Think of it like this: You buy a red rubber ball. Day after day you bounce your rubber ball – against the floor, toss it against the wall, ricochet it off the ceiling (I’m assuming you live in a house with unbreakable furniture!) and your rubber ball always works as designed. It always bounces just as high and just as well as the day you bought it. That rubber ball represents a normal heart.

Now imagine that you buy a red rubber ball and bounce it all day long. But as time passes, the ball doesn’t bounce as high as it once did. Either through some flaw in the manufacturing or a flaw in the rubber itself, your ball begins to lose its “bounce” and soon you have to toss the ball twice as hard to get it to bounce as high as it once did. That rubber ball represents a heart going through Heart Failure.

Since your heart can’t pump blood as well as it once did, you have to help it any way you can. One of the ways you help is to go on (and follow!) the diet plan. The diet has two rules: Consume no more than 2000 milligrams of sodium per day, and consume no more than 2000 milliliters of liquid per day. The 2000 milliliters of liquid isn’t that difficult to comply with – that’s a two liter bottle full of liquid per day. I have friends who drink a lot of water, especially when it is hot, and they may find it difficult to keep their consumption to under two liters per day, but for most of us it is not a problem. The problem is the 2000 milligrams of sodium.

How much is 2000 milligrams? A packet of Sweet’n Low contains 1 gram (1000 milligrams). So open up two packets of Sweet’N Low and pour the contents out on your counter. That’s how much sodium you are allowed per day.

You can cry now, I’ll certainly understand!

But you need to follow the diet plan that you doctor give you (your plan may not exactly be 2000 milliliters/2000 milligrams, it will be what your doctor feels is best for you) because you need to have to get the excess fluid out of you. Fluid makes you weigh more, and your heart has to work harder to get your blood through your body. Every pound you can lose helps your heart do its job better. So tighten up, we’re gonna fight this thing.

When you go to the store you are going to learn how to read a nutritional label. For the CHF diet, you are interested in two things: Serving size and sodium content. Both are clearly marked. Be careful – a common strategy to reduce the numbers is to reduce the portion size! So double-check that – can you really limit yourself to 2 ounces of chocolate? (My answer is “No!”)

You will find that many processed meats are no longer your friend. Soups don’t pass the sodium test very easily, either. And when labels brag about how they contain Sea Salt, your response should be “So what?” Sea Salt, Regular Salt, Moon Salt – they all contain sodium!

There are many salt substitutes available; Mrs. Dash is popular. I am not a fan of Mrs. Dash, but that’s just personal. it doesn’t appeal to me, but if you like it, enjoy it. You have to be careful with your salt substitutes – some of them replace the sodium with a little extra sugar, and some of them drop the Sodium Chloride in favor of Potassium Chloride. Some medications don’t mix well with Potassium, so read the label. I use Benson’s Gourmet Seasonings – it tastes really good, I recommend Table Tasty, their salt substitute, and Bravado, their chili seasoning. (And I’m not getting anything from Benson’s if you order, I’m just telling you what I like. You may find something else that appeals to you!)

CHF patients also need to monitor their weight. The best way to do this is after getting up in the morning, go to the bathroom and then weigh yourself. Do this before you shower or get dressed. When you are done, write your weight down and keep track of it day by day. If your weight goes up more than three pounds in a 24 hour period without an explination (birthday party, for example) call your doctor – you probably need a medication adjustment. Most likely you’ll be told to take an extra dose of diuretics (water pills) but the doctor may ask you to come by his/her office. Weight gain is usually a sign of fluid retention, and you already know that is not good for someone dealing with heart failure.

Fighting CHF will not be easy, especially at first when you are trying to get used to the new diet plan. But you can tough it out. After all, you are stronger than a little salt shaker, aren’t you?

More than you think

June 15, 2010: Grand Rounds Blog Carnival! Entry Guidelines HERE

Wastin’ away again in Margaritaville, searching for my lost shaker of salt… — Margaritaville, Jimmy Buffett (1977)

Don’t bother looking too hard for that salt shaker, Jimmy.

What did you have the last time you ate out? Or better yet, how much did you have? A 2007 report from the research journal Obesity that states that chefs regularly overestimate portion sizes. To make matters worse, the average diner underestimates the amount of food they have consumed. It’s tempting to try to fight this “portion creep” with willpower – after all, I don’t have to eat everything on my plate, do I? (If you are less than ten years old, the answer to that question is usually “YES!”) We can’t… if it is in front of us, we’ll eat it. Maybe mom and dad really did ruin all of us when they told us to clean our plates.

Portion creep doesn’t help when you are trying to watch your weight or eat healthy. It even affects our beverages – we’ll buy a “single” drink in a 16 ounce or 24 ounce bottle. I serving isn’t nearly that big – read the nutritional label. Or just ask anyone over 30 what a “Short Coke” is. (A 6 and a half ounce bottle of Coca-Cola) Interestingly enough, older chefs routinely serve less food than younger chefs, who honed their skills in the “Supersize me!” era.

Still trying to control your diet? I’m not helping much, am I?

So when we eat out we’re getting a larger portions, and naturally a whole heapin’ helping of ingredients… including our old friend, salt. Most of the salt in our diet comes from processed meat and/or eating out. If you are on the Congestive Heart Failure (CHF) diet, you have to watch the salt. And a nice meal out may not be so nice for your heart. Salt is under attack from all sides, people are calling for manufacturers to lower the amount of salt in foods (gradually; don’t make the entire nation go cold turkey) and there has even been a call for legislation to make this a law. But not so fast – when you remove most of the salt from food, strange things start happening to the food.

So what’s the answer? Ultimately, it is up to us – we’ve got to learn to order and eat smaller portions (Not easy) and complain to the manufacturers. You can also pick up a copy of Corrine Netzer’s Complete book of Food Counts. This book covers most of the national restaurant chains, and lists their menus and the nutritional contest of a lot of their items. It’ll give you a fighting chance the next time you’re heading out for a meal.

(I am not getting anything if you choose to purchase this book)

It’s not in my chart

REMEMBER: Grand Rounds hosted here on June 15! Entry guidelines are HERE

This post is not mine – I found it over at Life in the Fast Lane, a medical blog based in Australia. Also, in the original, the patient suffers from Crohn’s Disease. I’ve changed parts of it to reflect the thinking of someone living with a Congenital Heart Defect.

When you come into my hospital room, you need to know the facts of my life

that there is information not contained in my hospital chart

that I am a historian and a writer

that I wanted to teach when I graduated college

that I love life, beauty, travel, eating, Horatio Hornblower, Sherlock Holmes, the theater, movies, walking, my dog, and my parents

that I have been a member of a chronic illness group for four years

that I once thought I was the only one with a heart defect, or one of a very small number

that my girlfriend is someone just like me, because we automatically understand each other

When You come into my room, you need to know the losses of my life

that I was born with a defective heart and no one thought I would live this long

that I have been hospitalized more than a dozen times

that I am chronically ill, and am seeking healing, not cure

that I have to limit my sodium and keep track of how much I drink

that I can “fake it ’till I make it” but sometimes have no energy left at the end of the day

that I have a certain item of clothing I wear to every doctor’s appointment because I think it brings good luck

that I look up area hospitals before I travel… just in case

When You come into my room, you need to know my body

that I am afraid of medical procedures done at night …

I can’t sleep in a hospital, I often wake up crying

that I know when something just isn’t right, even if it isn’t recorded in my chart …

that I am on more than 10 pills each day

that I hate doctors who confer outside of my room; I worry that they are talking about me and the news is grim

that sometimes this body seems battered, old, vulnerable, tired … but still me

that I live by medication

that I live by technology

When You come into my room, you need to know my fears

that I am emotional … a fully functioning feeling person

that I am scared of the word “surgery”

that I once felt I could not breathe in recovery

that I have occasionally lost confidence in my body

that any new symptom scares me

that I am occasionally angry at life’s unfairness

that I worry about the future

that I am anxious about aging and how I will cope

that I long for one perfect day, only one symptom-free 24 hours

that there are times I want to give up

When You come into my room, you need to know my mind and my spirit

that I sometimes wonder “Why me?”

that I sometimes wonder what my life would be like if I were “normal”

That I sometimes wonder if I would be who I am if not for my bad heart

that I have faith, lose it, and regain it – all in a few moments

When You come into my room, you need to sustain my hope

You need to know that I believe love wins over hate; hope over despair; life over death

that I hope against hope

that I pray and believe prayer heals

that some days I am able to make meaning of suffering

that I am more gentle, more compassionate, better with dying, more loving, more sensitive, deeper in grief and in joy

When you come into my hospital room, promise me presence

Sit at my ‘mourning bench” if you are my physician

listen to me, talk truthfully to me

you need to know all this if you want to heal me

And always tell me the truth – unvarnished

because I know that I will never be cured

and support my hope

that tomorrow there may be new medicines and new surgeries

and that today you care deeply

that you will do your best

promise me a healing partnership

keep hope alive

it is all I have to fight with.

Amen, and Amen;