Posts Tagged ‘Heart Disease’

When the box says “Heart Healthy”, they don’t mean YOUR heart

October 21, 2008

“Blam-O Cereals are fortified with nutrients!”

“Every box of Blam-O Cereal is fired out of a cannon, to give you that extra POP in the morning!”

“Blam-O Cereals have been certified Heart Healthy!”

That’s one of the things that irritates me when I shop… the numerous labels that say their products are “heart healthy”. Because they aren’t.

They aren’t Heart Healthy for me. For someone who has suffered a heart attack or is trying to get his cholesterol down, they very well might be magic in a box. But not for me.

It’s a common problem for CHDer’s: A lot of times, the phrase “heart problems” bring to mind acquired heart problems. The problems you get naturally from age, or by “misbehaving”. That thought conficts with reality, as a lot of CHD patients are of below average height and weight, especially when they are young. I’ve actually been told “But you don’t look overweight!” The speaker should be glad that I was 14 at the time and was too shy and reserved to challenge them. If that happened today, they’d get an earful. Not only are they insulting me, they’re judging all of my friends who happen to not meet society’s artificial norms.

I’m sorry to shatter your assumptions, but I did not overeat, undereat, smoke, drink, or do anything else “wrong.” In fact, a CHDer’s heart usually makes them “be a good kid”. We look before we leap, think before we act, and because of dietary or physical restrictions, you’d probably think we’re a bit boring. Also, our minds work better than yours does. Can you keep track of ten (or twelve, or fifteen) different medications?

Didn’t think so.

Oh, by the way, it is not our mother’s fault that we have a Heart Defect. No one know why or how a heart defect occurs, but it happens early. By the time a woman looks her man in the eye and says “We’re going to have a baby!” the heart is already forming. So if you are dumb enough to think momma contributed to my problems, show some discretion and keep that opinion to yourself. Heart Moms are a special breed of woman, someone who was thrown for a loop during what should be the happiest time of her life. For the rest of her days she’s going to have an inner strength that the rest of us will envy… but she’ll live her life waiting for the other shoe to drop.

My eight year old niece has the perfect advice: “If you’re waiting on the other shoe to drop, sell that shoe on eBay! You can sell anything there!”

The wisdom of children!

Not on MY life!!!

October 9, 2008

This is unreal.

My hospital is not going to be doing the prothrombin test anymore: That’s the test of the Warfarin level in my blood that gives me my INR number. And it isn’t really their fault — their accreditation agency told them to stop offering the test. Apparently, if your Hemocrit is above 55%, they have to hand-calculate the results to determine the correct INR. The hand calculation means they can not guarantee the accuracy of the results, and so they ordered the hospital lab not to offer that test anymore.

I’m not mad at the lab techs. They are some of the nicest people I’ve met, and always bend over backwards to help me out or to hurry up the process if I ever need a test rushed. And they can still do the CBC test for me. But I’d really like to talk to someone from the accreditation agency. if you aren’t offering this test to people with a Hemocrit over 55%, what about the patients in the hospital? And if you suddenly can’t speak for the accuracy of the results, then what about all my previous results? I’ve had that test done once a month for SIX YEARS; are those results suddenly no good?

But like I said, I’m not mad at the hospital lab. I’m not mad at the accreditation agency, though if I sat down and asked them some questions, I’d probably be steaming before we were through. You are about to meet the people I am really mad at.

Before I even knew there was a problem, my doctors and nurses in Atlanta learned about it and were trying to work out the problem. One of my Nurses Googled my area and found this group of doctors, who have an office about half a mile from the hospital. She called them, explained the situation, and asked if they would be willing to do the prothrombin test for me.

Now don’t let the fancy name fool you. They aren’t a state agency, what they are is a group of 24 cardiologists who, along with their Nurses and Nurse Practitioners, work at five offices spread throughout the middle part of the state.  So my Nurse asks if they are set up to do a prothrombin test on a patient with a Hemocrit above 55%.

Certainly! came the answer.

Can you do it for a local patient of ours, and forward the results?

Absolutely not.

Before they will do a lab test for me, I would have to transfer all of my cardiac care to them. Look down their list of doctors — there is not a Pediatric Cardiologist in the entire group, much less an Adult Congenital Heart Specialist. But they are arrogant enough to demand that I leave the doctors and nurses that I trust, and who specialize in care for my heart, before they would stick a needle in my arm.

I’ll answer them with the same answer they gave my nurse: Absolutely not.

South Carolina has the highest death rate from heart disease in the country. Heart disease – the problems you have when you age, nasty stuff builds up in your arteries, and you have heart problems because of that. If you have a heart attack followed by a bypass, these are the guys for you. Congenital Heart Defects are pretty consistent throughout the population: 1 in every 125 people have a CHD; slightly more in some areas; slightly less in others. The composition of their staff shows that they are not interested in dealing with Congenital Heart Defects; I guess it just isn’t a “growth industry.”

And that is why I am miffed. They have offices in the larger cities, but they also have some offices in smaller areas. It would be the perfect situation for them to hire a Pediatric Cardiologist and move him/her between these smaller offices, providing good health care to sick kids (and adults) in the rural parts of the state. But it seems that they are chasing the dollar bill. Maybe that heart on their sign should be green, not red.

EVERY heart…

September 10, 2008

Did you watch How to Look Good Naked Tuesday night? I did, and was even more proud of my friend Heather. She’s every bit the fantastic young lady that you saw on TV.

Heather was born with Tricuspid Atresia, the same heart defect that I have. I met her when we both attended the Adult Congenital Heart Association’s (ACHA) National Conference this past May, and it seemed as if every time I saw her she was holding a video camera. She’s responsible for filming and editing the two ACHA videos you may have already seen. She even danced at the gala with the camera, filming the crowd! (I haven’t seen that film yet, but I’d love to. Adult Congenital Heart Defect patients know how to get their groove on!)

ACHA membership is open to any adult with a heart defect, and membership is FREE for those with a CHD. Join the group, get involved in our message boards, and trade information with others who share your experiences. Attend our national events, and plan to join us on Lobby Day 2009. Some of our larger local groups have monthly meetings and hold public events.

If you were inspired or brought to tears by  Heather’s story, I invite you to Join the Adult Congenital Heart Association. Get involved with a fun group of people, work to improve the lives of all of us with Heart Defects, and learn more about your heart health than you ever have before.

Because “Every heart deserves to live a lifetime.”

Heart Defect or Heart Disease?

August 10, 2008

It really should be a no-brainer. After all, a defect is a design flaw. A disease is an illness. But a lot of people, including me, use the terms interchangeably.

Actually, both words can be used together. My heart defect (Tricuspid Atresia) causes me to have various heart diseases, such as Cyanosis, Congestive Heart Failure, and Atrial Flutter. I occasionally use the phrase “Congenital Heart Disease”; when I do, I use it as a plural of the phrase “Congenital Heart Defect.” (Example: In an earlier post titled The Great Eight, there is a photo of eight people with Congenital Heart Disease.)

Helen Taussig, acknowledged as the Mother of Pediatric Cardiology, preferred the phrase “Congenital Malformations”, (her book is titled Congenital Malformations of the Heart) but even she fell into the Heart Defect/Heart Disease trap occasionally.

Today, the phrase Heart Disease is correctly associated with the various illnesses that can affect a person’s heart as they age. But it is being mutated into a code phrase for unhealthy behavior. After all, you wouldn’t have clogged arteries, high cholesterol, hypertension, or suffered a heart attack if you had taken care of yourself… right? Obviously, so this “logic” goes, you’ve been misbehaving.

I have been sitting in the Cardiologist’s waiting room and been asked “So what are you in for?” (In the same tone of voice used to ask Prisoner #6298965 what he is in for!) When I replied that I had a heart defect, I was told in no uncertain terms that I should have been more careful! Her husband had the exact same problem and she had thrown the salt shaker away, cut out the cholesterol, and didn’t fry any foods at all! I sat there with a bemused smile on my face as I wondered if her husband actually enjoyed eating cardboard boxes at every meal and how often was he able to slip away for a McDonald’s Double Cheeseburger.

It seems to be a grim comment on our society that it is assumed if you have an illness, you’re automatically at fault. When I volunteered at the museum, my boss was participating in a county fair parade when he suffered a heart attack and fell off of his horse. During his recovery period we occasionally heard comments about how he was going to have to lose weight, watch what he ate, and other advice. But my boss was as healthy as the horse he fell off of — earlier in life he had had a bout with Bacterial Pneumonia. Recent research has shown that some types of Bacterial Pneumonia can increase the possibility of a heart attack.

This has also led to almost making “obesity” a crime. The problem is, today’s definition of an “obese” person would have been quite acceptable in the past. Look at any of the paintings by the great masters: since most of the subjects were at least partially nude, it is easy to tell that they carry a few extra pounds. But what was recognized as healthy and attractive back then is seen as repulsive today.

And it is not because we have gotten smarter or more health conscious or “nutritionally aware.” Young people today, especially young ladies, are held to an impossibly high standard. Anything less than perfection is unacceptable, and open to ridicule.

CHDer’s have proven to themselves that despite their limitations and the funny lines on their chests, most of us have an inner strength that others can only dream of.  We’ve been through at least one heart operation, usually more. We’ve given gallons of blood, one vial at a time. Countless doctor’s appointments and hospital stays have caused us to come to grips with our mortality. We get knocked down all the time, but rarely are we beaten.