Walking shoes, Liquid Plum’r, and Cholesterol

There was a pretty big announcement at the American Heart Association’s Scientific Sessions 2010 meetings last week: the new drug Anacetrapib is very good at raising “Good” cholesterol (HDL) while at the same time lowering “Bad” cholesterol (LDL) with very little side effects!

Why is this important? (Part 1): Here’s a good way to remember the difference: HDL is Happy Cholesterol and LDL is Lousy Cholesterol. Lousy Cholesterol gunks up your blood vessels and causes blockages. Blocked arteries are official, certified BAD THINGS. Happy Cholesterol, on the other hand, eats Lousy Cholesterol and then drops it off in the liver, where it is processed out of the body.

Why is this important? (Part 2): Drugs don’t always work like you think they will. A few years ago there was a big clinical trial for a new drug that would also raise your HDL while lowering your LDL. Suddenly the trial was cancelled… a significant percentage of the trial participants suffered from high blood pressure and/or heart attacks. Some of them actually died.

Ouch.

So there was a lot of excitement when anacetrapib came through the clinical trial with acceptable results. Dr. John M. has a good post on the new drug, including how it is more like Liquid Plum’r. Or maybe Pac-Man.

We’re still a long way from this drug going to market, the next step is another clinical trial involving 30,000 people. But in a few years it will be available – and someone will promote it as “an alternative to exercise.”

In the words of the great philosopher, Mr. Bruce Hornsby, “…don’t you believe them.” A pill can not replace exercise, no matter how much LDL it gets rid of. Your heart and lungs are muscles – If you push them just a little past their optimal range of use on a regular basis, they’ll get stronger. If you don’t – if you sit on the couch and take your pill – they’ll slowly wear out. It’s a rule of life; you can’t stop it. We all age, but some of us do what we can to slow it down.

The new drug won’t be cheap. New drugs never are, there is too much Research and Development funding sunk into it. No one knows what the price will be yet, so let’s make a guess. The new anticoagulation drug Dabigatran will probably cost about $240 per month. That’s not taking into account any insurance plan you may use, but if you walked up to the pharmacy counter with your prescription and paid cash.

Using this as our estimate, a one year supply of Dabigatran would cost $2,800 per year. You can figure that Anacetrapib’s price will probably be somewhere in that range.

But one pair of good walking shoes will cost you $85. Shoot, let’s splurge a bit and get one of the more expensive brands. That will cost us $130. If we just use them for our high intensity walks, they’ll last a while. If we use them as our everyday shoes, we may need a new pair in a year. Cost of drug: $2,800 per year. Cost of shoes: possibly $260 per year, more likely to be less.

Exercise is cheaper than drugs – and a lot more fun!

A Weighty Matter

Some not so wonderful news to report: Children with Congenital Heart Disease (CHD) are more and more overweight.

That’s not good. While Cardiac Kids may be slow to add weight when they are young, most of us “catch up” later. We may be a little bit thin, but our weight is acceptable. But this study contends that once we catch up, we keep going! The reasons are many and varied, and usually just as applicable to Heart-Healthy kids: video games, fast food… you’ve heard all this before, I am sure.

But CHDers need to keep their weight under control. (…says the Funky Heart, who could stand to lose a few more pounds himself.) Every extra pound we carry means that our hearts have to work harder to pump blood through our body. That may not be a problem for the average kid, but our hearts are already bruised and beaten up; they have been cut apart and stitched back together again.  We need to make it as easy on them as possible.

So how much should you weigh? The research article cited above mentions the Body Mass Index (BMI) as one of its comparison tools.  The BMI is OK for use as a comparison, but don’t use it as your source for your proper weight. Ask your Cardiologist for advice about a good weight range to stay in. Many people contend that the formula used to calculate your BMI number is flawed. You have to wonder if they may not be on to something, since according to their BMI numbers, former President George W. Bush is a fatso and actor Tom Cruise (five foot, seven inches tall; 160 pounds) is plump.

So find out what your healthy weight range is, and do what you can to keep it there. Be sure to discuss any exercise plan with your doctor first – overdoing it and damaging your heart while you are trying to take care of yourself defeats the entire purpose, after all. Go outside and play; don’t think about exercising, just go have fun. Take a walk through the neighborhood, at your own pace. Get FitDeck Exercise Playing Cards. FitDeck Junior is great for Cardiac Kids, providing that their Cardiologist gives their approval. It’s all fun and games… but they are really exercising! (Shhhh! Don’t tell ’em the secret!)

I often remind my readers that CHDers are living longer and better lives as modern medicine develops new ways to overcome our Heart Defect. But it doesn’t “just happen”, we have to contribute to our own well-being.

Left foot, right foot….

I go walking,  after midnight... – Walking after Midnight,  Patsy Cline (1957)

Actually I walking early this morning, before the temperature went up. After my fall and the Gout, I’ve walked very little for the past month and my body isn’t used to it. I’ve not walked in so long that my dog barked at me! One bark… almost as if she barked and then thought  “I didn’t recognize you! Oh man, don’t take this personally, OK?”

I didn’t walk much at all before I was exhausted – I’m going to have to go alllllllll the way back to the very beginning of my walking plan. The first time my Cardiologist told me to get out and walk, I planned to circle the driveway for 15 minutes.

I barely lasted seven minutes before I felt like my lungs were going to explode. But I was back at it the next day, and slowly built up my stamina. It’s the only way I know how to do it.

So…. see ya on the walking trail tomorrow!

The Long Walk

“Improvise, adapt, and overcome.” – Heartbreak Ridge (1986)

Heart parents are understandably worried about their Cardiac Kid’s activity level. It’s a balancing act – we know that exercise and activity can help strengthen a weak heart, but how much is too much? And couldn’t something bad happen if he pushed him/herself too hard?

A 1997 research report concluded that parents worry about their children who have a Congenital Heart Defect (CHD). The study identified seven specific concerns but was unable to determine if these were specific to parents of CHD kids. The study was very limited – only eight parents participated – and drew no conclusions.

Sort of leaves you wondering. One of the major questions on my parents mind was my activity level, and what I could do physically. I think they were finally convinced by a Pediatrician who told them that he really had no idea what my limits were. “But I do know that when he gets tired, he’ll stop and rest,” he said. “I’ve seen thousands of children do that.” And…. he was right. No matter how much fun I was having, when I got tired, I’d quit and rest, and rejoin the game later. It all happened naturally, no one had to teach me how to do that.

One problem CHD kids can have is a lack of self-efficacy (in other words, we sometimes don’t believe we can accomplish a goal.) And honestly, sometimes we can’t – not in the normal, accepted way. This is where we have to convince ourselves that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog:

“…its about having the self-confidence to find another way when you reach a roadblock.”

And we all get a case of  “I don’t want to!” at one time or another. I know that walking is good for me, but I also know that walking in cold weather is going to cause my joints to hurt. I’ve got on thermals, coats, gloves, a scarf, and a heavy sweater; I’ve tried hand warmers and foot warmers (both thermal and electric) but it still happens – probably because of my cyanosis and/or my bloodthinners. My hands are going to ache; the joints of my fingers are going to hurt so much that they feel like dead weights until I get back inside and warm them. So in the winter months you can’t pry me out of the house and I wonder how the CHDers I know who live in cold areas survive.

This report outlines some exercise and physical activity guidelines for CHDers.  Even though those of us with a univentricular heart (a cool phrase for someone with one working ventricle, like my Tricuspid Atresia) have a reduced exercise tolerance, physical activity can help us, too. We just need to make sure that we don’t overdo it. And recent studies show that physical activity usually doesn’t trigger an ICD shock.

So the bottom line, Mom and Dad, is don’t become Helicopter parents and “hover” all the time. And for us CHDers, it’s probably OK to get out and exercise or play. Naturally, check with your doctor first.

And for me, to get up the enthusiasm to get out in the cold!

On the Trail

Steve be hurtin’.

I keep a chart of my walking, and right now it’s pretty embarrassing – I walked three days in September. That’s it. First we had a couple of days when the weather just was too nasty to get outside, then my grandmother fell. Hitting her head put her in the hospital for a week before she passed away, and then my hernia acted up.

And I know what did it, too. We stood in the receiving line before my grandmother’s funeral for three hours – and I think that is what triggered it. My niece was brave enough to go to the viewing but not the funeral, so when she was ready to go, my brother gave me a wave and made the “telephone” sign with his hand. I nodded and walked her outside to call home for someone to come and get her, and I swear that I couldn’t move my feet for a few steps, I had been standing that long!

And the hernia just didn’t get mad at me, it was in a full blown rage – it has hurt every day from September 10 until yesterday! Walk? I was glad to be able to hobble to the bathroom at times!

But yesterday it didn’t hurt – what’s wrong down there? – and today it has been well behaved also. So today, gingerly, I got outside and walked. My watch said that I walked 15 minutes and my pedometer records that I walked 1,637 steps. That’s about half a mile. Not much.

But I sure feel it. I’m “wore out”, as we say here in the South, because all of my stamina has trickled away during my month of inactivity.Today was my first day back, and it really took it out of me.

But if you want to stay healthy, you have to stay active. This is especially true when you have a Congenital Heart Defect (CHD), so I did a little bit of walking today. I had a feeling the rest of the day was going to be spent nursing little aches and pains, but I was out there anyway. Because for a while there my world was limited almost exclusively to either my bed or the couch, and that was not very appealing at all. And when I did go somewhere, it wasn’t very long before I was out of gas and just couldn’t go any further. I’m still not 100% certain what I’m supposed to do with my life, but holding down a couch probably isn’t it.

So I’ll be back out there again tomorrow, and I’ll probably be hurtin’ again tomorrow evening. But walking is a major part of my exercise routine, and I do what I do to defeat the evil that lives within me.

New Adult Congenital Heart Defect book from Emory!

By now I think you know how much I appreciate the Adult Congenital Heart Defect (ACHD) group at Emory University Hospital. They aren’t just a group of doctors and nurses, they’re a team, and I’m glad to have them on my side. If my heart defect ever wants to cause trouble, I’m bringing them to the fight with me. I want every advantage I can get, and I do not plan to fight fair!

Emory’s ACHD group has produced a new 64 page book for Adults with a Congenital Heart Defect! Although the printed version won’t be out until next week, it is already available online! Author Teresa Lyle (my nurse practitioner!) says that the online copy is not the final version, but the changes are minor and mainly involve artwork.

This book can be especially useful  to older teens with a heart defect. Pretty soon you will transition into the adult world, where a lot of Heart Defect patients get “lost” – they fall away from care and stop going to see their cardiologist. This booklet can help you find a good doctor and keep you in the loop. Modern CHDers tend to do well, but things go a lot better if we have good doctors and nurses that understand our defects. It can also help you take control of some aspects of your life that you may not have even realized are affected by your heart problem. We need to make sure we take antibiotics before dental appointments, for example.

This is going to be a valuable resourse both for older teens, and also for us older Heart Warriors who may be moving on in life: it will help keep us on the straight and narrow if we decide to move, start a family, or change jobs. And I highly recommend it!

Work It!

There really shouldn’t be any doubt about it – if you have a chronic illness such as a heart defect, you have got to take care of yourself. Obtaining health insurance is difficult if not impossible – yet we are the ones who need it, as we’ll need doctor’s appointments and prescription medication more often than most people. Public assistance (Medicare or Medicaid here in the United States) is available, but both programs make you jump through bureaucratic hoops and limit the amount of pay you can earn. Most CHDers I know have bum hearts but sharp brains, and we’d rather not go that route.

One of the best things you can do for yourself is exercise: you’ll feel better, and hopefully you’ll be able to hold the doctor at bay for a little longer. You usually can’t weight – lift yourself off of your medicines, but improve your health and the doctor might not need to see you nearly as often. After I went into heart failure and then had a stroke, my cardiologist wanted to see me once a month for eight months – That’s the cost of gas to from my home to Atlanta and back (about 500 miles one way), meals, and a hotel room every 30 days. It adds up.

So do what you can to take care of yourself. First of all, discuss your exercise options with your doctor. If you propose to start walking, he’ll probably be cool with that. If you want to climb Mount Everest… I doubt he’ll agree!

As you may know, I walk. I would have loved to have walked the Bolder Boulder, but my cardiologist had said “No.” because of the altitude, and I followed his advice.  A good brisk walk that gets your heart rate up is a great thing. It gives you time to sort through your problems and make important decisions. It also gives you a natural high, a sense of feeling good and actually doing something to help yourself. And recent research has shown that feeling lasts a lot longer than you might think – even though you don’t “feel” it, your body is supercharged! Obesity and Diabetes make a case of heart failure worse, so it stands to reason that if you are susceptible to heart failure, avoid the other two. Exercise can reduce your risk of both conditions.

So go for a walk. Play in the neighborhood. Put some music on the stereo and dance around the house – I promise I won’t laugh, I can’t dance either! Just do something. Just get up and start taking care of yourself!

Do yourself a favor and move those muscles;

Defeatin’ evil!

I was worried that I would not be able to function properly while in Boulder because of the higher altitude, but I am doing a lot better than I expected. I went out and saw some of the city – I didn’t pack my pedometer so I can’t tell you how far I walked, but I wouldn’t be surprised if it was two miles or more. My pulse ox is about 77% ( down from the 80% I usually have at home.)

At home, I set my watch for a certain amount of time and walk a fast pace until the time runs out, or I get too tired to continue. Here, it was city walking: Stop and start, walk into the store, wait for the light to change, etc. I have no idea how I would do on one of my timed walks and really have no desire to find out! I’m just very happy that things are going so well.

It’s also a balancing act – I’ve been told by the Denver ACHA chapter and my cardiologist to stay hydrated… BUT my cardiologist has also said to be careful because of my Congestive Heart Failure restrictions (2000 milliliters of liquid per day). Because I am feeling good, I am assuming that I am doing it right. (Famous last words….)

There are certain things that someone with a heart defect should NOT do; we should avoid caffeine overload. Here’s an article about a young man who ran into problems after consuming energy drinks. Thankfully he survived. And since he didn’t know he had a heart defect, you can’t really “blame” him for ignoring his doctor’s advice.

Walking, having supplemental oxygen, drinking enough without drinking too much (and drinking things that won’t freak my heart out) may seem like a sacrifice, but I’ll do it. Because while I have a heart defect, it does not own me.

I do what I do to defeat the evil that lives within me.

The Bolder Boulder is getting closer!

The Funky Heart

(My fancy signature is on my home computer)

Heart Failure, Salt, and Exercise

The two rules of the Congestive Heart Failure (CHF) diet are 1) keep your liquid intake below 2000 milliliters of liquid per day; and 2) reduce your daily salt intake to below 2000 milligrams of sodium per day. Keeping your salt intake down is crucial: less sodium means less liquid trapped in your body, which makes it easier for your weak heart to do its job.

Lowering your salt intake is also the hardest goal to accomplish. Putting down the salt shaker usually isn’t enough – processed foods are notorious for having high salt content.  Sandwich meats are among the worst, and those “heart healthy” soups are low in fat… but the sodium is so high, you can see it from below!

A new study shows that even people who were trying to keep their salt intake below 2000 mg overshot the mark. Ouch! And this just isn’t a suggestion – for a Heart Failure patient it is a critical lifestyle change. So if you are on the CHF diet, keep a close eye on your sodium intake. It may be higher than you think!

There is also a report out on something you can do to actively combat Heart Failure: exercise! Obviously, we are all different, so you should discuss an exercise program with your doctor  before you start. What works for me may not be good for you, so check first. But CHF patients who are able to add moderate exercise to their diet and medication have a higher quality of life.

So what is considered “moderate exercise”? Walking! 100 steps per minute for 30 minutes daily, (3000 steps in 30 minutes, if you are using a pedometer) five days a week is a good exercise program. That’s a pretty fast pace, so start slow and work up to it. After all, Rome wasn’t built in a day, and you don’t have to turn yourself into a treadmill trackstar overnight.

While you are walking, why not use the new FiTrainer? FiTrainer is a pair of  headphones that also includes an ear clip with a built in heart rate monitor. It is pre-programmed with several workouts (with music!) or you can plug in your own MP3 player. An electronic voice reports your heart rate through the earphones, so you never have to check a display!

New Routine

I am still trying to get my stamina and strength back, and it is coming along. I’m satisfied, but I’m in bit of a rush because of a big event that is coming up. (You’ll read about it soon, a few final details still have to be ironed out) If I were to go to visit someone in the hospital like I did a few weeks ago, I wouldn’t feel worn out… but I need all the juice I have, and more.

*Sigh* I wish I was like my cell phone – just plug myself into the wall overnight and recharge! But it doesn’t work that way.

So I’m watching what I eat and getting good exercise. In fact, I recently tried something new: a FitDeck.

FitDeck Exercise Playing Cards are a group of exercises, each one printed on an individual card of playing card stock. There are 56 cards in the basic packs (there are several different basic packs, and also several 26 card “Booster Packs” with more specific exercises.) I purchased the Bodyweight pack – no exercise equipment needed. Just you.

Fair warning, the Bodyweight pack isn’t easy! The first thing I did was look at all the cards, and take out the one that I don’t feel I can perform just yet. I didn’t throw them away; I keep them close and if/when I get into good enough shape to try something more advanced, I’ll slip a few back into the rotation. But right now I’m a loooooong way from that happening.

So every morning, I get out and walk. After I finish my walk and rest for a few moments, I walk up and down a “flight” of stairs. It not much of a challenge with only four steps, so I go up and come down as fast as I can, and keep doing it until I’m worn down. And I aim to do it for one more second that I did it yesterday! And then after I catch my breath, out comes the FitDeck. I shuffle the deck, draw a card, and do that exercise. If I’m not “whooped” (A good Southern term meaning “to tired to carry on!”) I reshuffle and draw again.

While the Bodyweight pack is hard, I don’t want to move down to the Junior version – hey, if I can’t do the kid’s exercises, what does that say about me? – nor do I want to move to the Seniors version. What I am thinking of doing is buying several different packs and mixing and matching the cards… creating Steve’s Congenital Heart Defect Customized FitDeck!

Seriously, I tend to get bored too easy – the same routine, day after day, and pretty soon I am not looking forward to it at all. I can give you 16,735 good reasons NOT to get outside and walk, and that is without really trying. And it’s too easy to let it slip.

But my defective heart needs all the strength I can build. And if the FitDeck can keep enough variety in my exercises to keep me interested, that’s just what I need!