Posts Tagged ‘Cardiac’

Arrrgh! Send the little mates to camp, me hearties!

July 7, 2010

My friend Rachel (I’ve appeared on her Blogtalk Radio show! We talked hearts for 90 minutes!) has a great post over at Blog4CHD on why you should send your Cardiac Kid to Camp del Corazon. Camp del Corazon is a free non-profit 501(c)(3)  organization that provides year-round experiential opportunities for children faced with the challenges of growing up and living with heart disease – and it looks like a heck of a lot of fun. I wonder if the CdC folks have ever considered expanding to the East Coast, because I never went to anything like this when I was growing up.

Why send your Cardiac Kid to camp? Rachel gives ten reasons, including…

There is absolutely NO COST to your family!

Thoroughly enthusiastic counselors (such as myself!) are there for the kids…

ALL activities have a nurse stationed at them!

But Rachel lists the best reason – and I mean the greatest possible reason to send the kids packing – at number five! And what reason could that be?

PIRATES! How can you go wrong with an awesome theme like pirates?

Cardiac Kids, camp, fun, and PIRATES! Sign me up!

Seriously, a camp like Camp del Corazon would be an amazing experience for your child. If you can go, please do!

Growing blood vessels

November 20, 2009

Here’s a medical discovery made by cancer researchers that can benefit Funky Hearts, too. Researchers at Uppsala University in Sweden have recently discovered a protein that controls the growth of new blood vessels. These researchers want to limit blood vessel growth in cancer patients, at least temporarily: if a tumor connects to a blood vessel, it then has access to all the resources it needs to grow. It’s almost like throwing gasoline on a fire.

But for someone with a Congenital Heart Defect it could be useful to encourage blood vessel growth. Everyone is born with a set of Collateral Blood Vessels – these are tiny “extra” blood vessels that are the body’s backup blood delivery system. Normally, they never really have to do anything.

But if you suffer a heart attack (or are born with a Heart Defect) your collaterals can “wake up” and begin to pump blood to the affected heart muscle while avoiding regular blood vessels that are damaged or missing.

Now that we are learning how to slow down or stop blood vessel growth, perhaps we can figure out how to make certain blood vessels grow more.  Wouldn’t it be really cool if a doctor could diagnose a heart defect and then take steps to counter it by injecting a localized drug right where it is needed?

The main stumbling block to this idea is the fact that even when they are active, the collaterals are still tiny blood vessels. We’d need a lot of them, and there is really no rhyme or reason in determining where they are located. They grow as needed. Right now we don’t have any visualization equipment that is sensitive enough to find all these extra blood vessels. And surgery of any kind in an area where the location of the blood vessels aren’t known would be pretty risky. There are a lot of obstacles to be overcome before this idea could ever be a reality.

But who knows what the future holds?

Requires 2 AA batteries!

September 15, 2009

I was at my ACHD Cardiologist in Atlanta in November of 2007, and everything was going smooooooth. I was doing well, feeling great, and the staff seemed very pleased. I also had a checkup at the Pacemaker clinic scheduled. The Clinic is in the rear of the Cardiology department, and both departments worked well together. A lot of times, you could go to your Cardiology appointment and mention the Pacemaker appointment to the nurse. The Cardiology staff would check your blood pressure and do an EKG trace, then send you back to the Pacemaker clinic during that “lull” when you are waiting for the doctor.

So I was sitting in the Pacemaker Clinic with a chest full of EKG leads and the magnet resting over my pacer, when the tech says “Your battery needs changing!”

Whoa! Hold on a sec – “Battery change” is a code word for “surgery”, not an easy word to hear. In a moment the Pacer tech had the telephone in her hand, then she hung up and said “We’ve got a slot open in the surgical schedule, do you want to get it changed today?”

HOLY COW! Wait a minute, now… a moment ago I was golden. Now I need surgery! Let’s not rush into anything, I need a moment to catch my breath. I asked the pacemaker tech how long the battery had and when she said about three months, I told her that I wanted to put it off for a while, I needed to wrap my head around the idea of surgery. I had the replacement done about a month later.

My pacemaker battery wears out relatively quickly. Since it doesn’t “plug in” to the heart’s electrical system at the optimal point and I am 100% paced, it uses more energy than usual. I usually get about three years of use – in fact, at my last check-up a few weeks ago, they told me that it would need to be replaced in 16 to 21 months.

But there is new battery technology available – Lithium Carbon Monofluoride (Li/CFx). Li/CFx batteries can hold just as much energy but are lighter. The US Navy has been studying Li/CFx batteries to determine if they can tolerate different environmental conditions, and have been pleased with the results. The batteries are stable – they do have “performance issues” in temperatures of -20 C (4 degrees below zero on the Fahrenheit scale) but do not pose a problem in a 98.6 degree (37 C) environment such as the human body. They also discharge at a fairly constant rate, which gives the new Li/CFx battery developed by EaglePicher Medical Power the ability to predict when it will run out and give doctors up to six months warning. I think that is what threw me for a loop – I was fine, and then I needed to get my pacemaker replaced… and they were talking about doing it that day! That might be a little too much to absorb at once!

Did researchers just find the cause of CHDs?

July 6, 2009

It looks like they actually hit it.

Stem Cells have been discovered inside of embryonic hearts that may actually be the basis for all three kinds of heart tissue (the smooth muscle, the striated muscle, and the endothelial cells. (Cells that line the heart and all of the blood vessels). These cells contain a protien called Islet-1 that has been found before in embryonic mouse hearts, and recently researchers at Massachusetts General Hospital found them in human embryonic hearts. The initial hope is not that Islet-1 Stem Cells can be manipulated in to cures for various heart problems – you need a lot of Stem Cells to affect any portion of the body, more than the normal human usually has available – but that heart tissue can be grown as a template, and used to study the effects of various heart drugs.

An unexpected bonus is that these stem cells seem to be more prevalent in the areas of the heart that trigger Congenital Heart Defects. Obviously much more study is needed – researchers are years away from even a test of their theory – but this looks promising.

Advice to a friend

July 2, 2009

What follows was written by Stephanie to Heather Magee, before Heather underwent a surgical procedure last year. (If you missed it, Heather is recovering nicely. I saw her while in Colorado, she looks good but says she is still a little weak.)

Stephanie, also a Heart Warrior, sent this note to Heather about getting through an operation and what comes next. Heather wanted me to share it with Funky Heart readers:

I can understand the fear and doubt that races through your minds about the actual surgery. The surgery is not the problem. It’s the aftermath. It’s the emotional part of having Heart Disease. Be prepared to NOT be afraid to ask for professional help. Maybe before surgery reach out to others to see how they have gotten through it.

Be patient with your body. Your mind is always going to move faster and be ready for more than your body may be able to handle, which is beyond frustrating. However, you may discover a new hobby this way. Try to find a way to turn your negatives into positives. But please know that you are not alone if you are having suicidal thoughts, are extremely irritable, or have days where you see no point of getting out of bed. Do not be afraid to ask people to leave you alone, just to be nice. This is a time to heal physically, emotionally, and spiritually. Stress is harder on our hearts than we often think.

Be thankful you have had such a strong heart up to this point. After surgery, you will only be stronger. Never give up hope for tomorrow. Always be thankful for yesterday. Overall, please do one thing for me. Have a moment to yourself where you are standing in front of the mirror naked, with the lights on, and really look at your body. Even if you are crying, and your stomach is twisting, force a smile to your beautiful face, look into those survivor’s eyes and say “I am beautiful. I am in fact a Heart Disease Survivor.”


The battle is joined!

February 12, 2009

I flip out my cell phone and text a message to a friend living in Los Angeles. I write an e-mail to another friend: he’s living in Arkansas, but he drives a big rig. I have no idea where he is, but he’ll read my e-mail on his laptop. I post on this blog and I receive comments from Canada, Great Britain, and even Australia.  Instant, worldwide communication is a wonderful thing.

I was born on a Tuesday, the doctors didn’t detect my heart defect until Friday. There was no resource except the local library, and they had practically nothing.

No other survivors in the area. No support groups. No internet.

Every answer the doctors gave began with the words “The books say…” We didn’t have those books, and probably couldn’t understand them if we did.

No Echos… No MRI.

As my father has said, “We were grasping at straws.”

How in the world did parents raise a sick kid in the bad old days? Especially when there was next to nothing known about the illness? When it feels like you are just struggling in the dark, trying to find the light switch in a room that you have never been in before?

One of the few answers available is “The best you can,” but that is a throwaway answer. A platitude. Like the TV shows when the cop tells someone “I’m sorry for your loss.” – you know he probably doesn’t mean it, or isn’t truly sorry, but that is what is required of him. So he spits it out and everyone knows it is a false sentiment.

Our personal philosophy is that we live to fight another day. In fact, that has actually been said before: Albert Pacifico looked my father in the eye and told him I was bleeding profusely in the operating room. It was possible to continue the operation, but the outcome was liable to be bad. What would you have me to do? And my father told him to stop operating and get out the best he could. We’d live to fight another day.

The actual quote is “He who fights and runs away will live to fight another day.” That implies weakness… the inability or the unwillingness to stand and fight. But really, it means that we pick the battlefield and the weapon. At that time – 1988 – daddy told the surgeon to get out, we’d fight this battle on our own terms. Pacifico probably thought there was no battle left to be fought: You can’t open his chest without massive bleeding, therefore no more surgeries. Now you can do some operative procedures without opening the chest… and more are coming.

We choose the battlefield and we choose the weapons. I always choose a major medical center and a team of exceptional, never say quit cardiologists. Because when I fight, I refuse to fight fair!

What do you think you are doing?!?!

January 15, 2009

You know it had to happen. Especially right after I had written about volunteering at a training school.

I was scheduled for a Prothrombin test today, so I dutifully appeared at the doctor’s office, filled out the form, and waited my turn. It wasn’t long before my name was called and I went into the examining area.

The first unusual thing to happen was when we reach the cubbyhole they have set aside for bloodwork, and the nurse grabs my left wrist, searching for my pulse.

“You aren’t going to be able to find it there,” I tell her. “Use my other arm.”

“Oh, I usually don’t have any problems,” the nurse says. Ut-oh. Attitude alert!

After a few moments she admits, my pulse is hard to find. “I have a shunt on that side of my body,” I said. “The pulse isn’t readable on my left side.”

My answer earned me a Why didn’t you tell me that? glare. The next thing was the blood pressure – that was also new – and then she pulled out the lancet for a Prothrombin test via finger stick.

By now I have already rolled up my sleeve. “The finger stick test doesn’t work on me,” I tell the nurse, but I’ve got a feeling about what will  happen next.


I’ve tried to use one of the home test machines, but my Hemocrit is so high that the machine just reads error code number 5. So they have to do the blood draw from my elbow joint.”

“Let’s try it anyway,” she says, and snaps my finger with the lancet. In a few moments my blood is transferred to the reader; it whirrs and clicks and reports ERROR CODE 5.

Another glare for me. And to make it even better, my sleeve is still rolled up. Yes ma’m, I’ve done this test before!

While it’s true that you have the medical knowledge, I’ve been fighting this illness all my life. I know my body. And I’m familiar with most of the diagnostic tests that I may have to have. Just take a moment to slow down and listen to what your patient (in this case, me!) is saying. We’re not just another sample, another form to be filled out, another person to get a medical history from.

We’ve figured out a lot about how to live with whatever we are fighting. And we’ll usually share what we know… if you just take a moment and ask.

Basic Cardiology: How the Heart Works

December 14, 2008

95% – perhaps more – of Heart Moms and Dads have no medical training. You probably have a normal, non medical job, and never really thought about the heart until that fateful day when a doctor sat you down and said “We think there could be a problem with your child’s heart…”

If you want to try to stay one step ahead of a Congenital Heart Defect, you’d better learn all you can about a complex organ in a very short time. It can difficult, especially when you are under pressure – how many times have Heart Parents asked their doctor to hold on just a moment and explain what he’s saying? You’d be surprised at how much heart parents without medical backgrounds know about the human heart, but when you are trying to learn so much as rapidly as possible, you get swamped. It can feel as if you are trying to trying to drink from a fire hose.

So let’s slow down, and take a walk through a healthy human heart. First, here’s a nice diagram we can follow. If you have an engineering background, or a chart just makes more sense, you might want to look at this schematic. (You can click this chart and make it bigger!)

The heart is not a pump. It’s actually two pumps fused together – The right side pumps blood to the lungs and back; the left side of the heart pumps blood through the body. Blood that has already made the trip through the body flows through the Superior Vena Cava and the Inferior Vena Cava into the Right Atrium. This blood has little oxygen. The Atrium contracts, squeezing the blood through the Tricuspid Valve into the Right Ventricle. When the Right Ventricle contracts, the blood is squeezed through the Pulmonary Valve into the Pulmonary Artery, and then to the lungs.

There are two large blood vessels on top of the heart. The Aorta rises out of the Left Ventricle, loops downward and carries blood to the lower half of the body, which makes it look like an upside down U. The Pulmonary Artery splits just after it leaves the heart, taking blood to the right and left lung. This makes it look like a T, and it is tucked neatly into the arch created by the Aorta.

The Pulmonary Artery is also misnamed. Every artery in the body carries blood with a high oxygen content… except the Pulmonary Artery. Yes, it sounds strange, but it matches an older definition of arteries and veins: Arteries move blood away from the heart, veins move blood towards the heart.

In the lungs carbon dioxide is exchanged for oxygen and the blood returns to the heart, arriving in the Left Atrium. The left Atrium contracts, and blood flows through the Mitral Valve into the Left Ventricle. When the Left Ventricle contracts, blood flows through the Aortic Valve into the Aorta, and out into the body.

You’ll notice that while the Right Ventricle is larger, its heart wall is not as thick. The Right Ventricle is not a very strong pump, but that’s ok… all it has to do is move the blood to the lungs and back. The Left Ventricle is just a little smaller but the heart wall is thicker. It’s the heart’s main muscle, delivering a powerful squeeze to send blood throughout the entire body. This is one of the main reasons why right-side heart defects (like Tricuspid Atresia) have been survivable for some time while left-side defects are much more difficult. As I’ve mentioned before, Hypoplastic Left Heart Syndrome (HLHS) was almost 100% fatal until the mid 1980’s, and the oldest HLHS survivors are just reaching adulthood.

I hope this basic look at a heart has been helpful to you. Some of Funky Heart‘s readers learned all this long ago, and they may find it a little boring. But in the United States, someone  is born with a Congenital Heart Defect every fouteen minutes. There is always a need to review the basics!

Tell your Story: Being Asked

December 5, 2008

I broke one of the major rules yesterday – I changed subjects in the middle of the conversation! But I felt that the information about Medicare part A was important enough to “interrupt myself.”

Now, where were we…

You’ve decided to speak up for those of us who have a Congenital Heart Defect (CHD) and I’ve given you some tips about how to shape your story. You’ve thought about it, perhaps written it out, and honed it into a great presentation. So where do you go to to tell it, and how do you get asked to share?

Volunteer! If you are in a meeting of your CHD support group and the moderator asks if anyone would like to say a few words, that’s your cue! Now here’s the hard part – this is not the time for that presentation we’ve put together. This group isn’t looking for your “Four score and seven years ago” speech – right now, they just want to hear who you are and what you are doing here. You’ll keep it simple and get right to the point. This is what I would say:

“My name is Steve, I’m 42 years old, and I was born with Tricuspid Atresia. I’ve survived three heart surgeries and even though I’ve managed to hit most of the bumps in the road, overall I’m doing pretty good.”

And that’s all. I never mention my pacemaker, or this blog, or heart failure. That can come later, all I’m intending to do right now is introduce myself to the group. If it is appropriate to mention that you’re willing to talk one on one with other members, do so.

The second thing you need to do is participate. If/when there is a group discussion, be involved. Don’t just talk to hear the words coming out of your mouth; actually have a point that contributes to the discussion. Know your facts and present them as needed. (You may want to start a research file, we’ll talk about that in a later post)

Never, ever make it up as you go along. You are trying to convince the others to trust you. If you make a mistake, that’s one thing. Acknowledge it and apologize. But if you are ever thought to be a liar, you lose all the trust you have built up – and you’ll never get it back. And please don’t give medical advice… even if you do have M.D. after your name, you may not know the complete medical situation.

Sooner or later your group is going to have an event – a fundraiser, or an event designed to raise CHD awareness. You need to get involved! You may be presented with a chance to speak; if so, shine up that eight minute presentation. If not, don’t worry about it – for every person that’s “out front”, there are a lot more working behind the scenes.

And while I am loath to tell you to “have fun” – It’s very hard to use the word “fun” in the same sentence with the phrase “Congenital Heart Defect” – I will tell you to take as much away from the experience as you can. Learning to deal with a CHD is quite a challenge. And a challenge can either destroy you, or you can overcome it. I choose to overcome it!

These people are gonna kill me!

November 21, 2008

I don’t think I’ve written much about my second operation. It went so well, I really just hadn’t thought about it. “It went well” is relative, of course… at the time, I thought that I had been hit by a large truck! And that I was going to to be beaten to death.

After being informed that Elevator Sprints was a game that I didn’t need to be playing – even if I was one of the Co-creators – I didn’t cause any more trouble for the hospital staff. But trust me, they got me back, in spades!

I left my room one day to walk up and down the halls (one of the few things you can do when stuck in a hospital) and next to the door was a gurney. Someone had written on the plastic cover

Steve C****

Bed 3, Rm 406

Surgery 3/17/77 0800

Oh, boy. I don’t think that it had “clicked” in my head before that that these people meant to cut my chest open! I ran back into my room, jumped into my bed like Pete Rose sliding into second base, and cried my eyes out. Not a manly thing to do, but I was eleven years old, so I’m pretty sure that it was OK.

The day of surgery was kind of strange, too. The operation was scheduled for 8:00 AM, but when I woke up in recovery, I was in for quite a surprise. I was facing a large plate glass window that overlooked the city, and it was night! Exactly how long did that surgery take?

It turns out that it lasted about as long as they expected it to last – but there had been a serious accident on the interstate. I never heard exactly what happened, but a lot of people came into the ER at about the same time, and a good number of them needed surgery. All the “routine” surgical patients got rescheduled while the critical patients went first.  Since I had already been sedated, they just kept me under a very light sedation until my turn came. Thankfully my parents had heard about the delay so they weren’t climbing the walls.

When my turn finally did come, the operation went smoothly. I was supposed to have a Blalock-Taussig Shunt, but they were worried about finding a vein that was large enough to act as the conduit. (No MRI scans in 1977!) Thankfully, it was big enough to do the job!

I didn’t get a Cough Bear after my surgery. I didn’t even get a pillow – remember this occured in 1977, and no one had thought about using a soft object to brace against when you cleared your lungs yet. In fact, the accepted practice for cleaning your lungs out will make most modern cardiac patients cringe.

Two nurses would come into your room and help you sit up. Then they would get you to lean forward as much as you could, and when you couldn’t go any further, one of the nurses would take you by the shoulders and lean you over another few inches. Then the other nurse would cup her hands and pound on your back – HARD!

After you were beaten like a tough steak you were told to cough into a cup. The purpose of this form of torture was to prevent mucus from building up in your lungs and causing pneumonia. I was hoping that there would be a river of mucus – enough to get these nurses (literally) off my back!

You could always hear echos of their slaps as they worked their way down the hall. To hear them getting closer and closer caused more fear than any movie Wes Craven ever made. But once, they reversed their usual pattern and started at my end of the hall. I was number one on the list. These ladies were warmed up and ra’ring to go when they hit my door.

After a particularly ferocious lung clearing series of smacks, I coughed up my liver and gasped, “I don’t know what I did to make you ladies angry, but I sincerely apologize!”