Posts Tagged ‘Cardiac Kid’

On the cutting edge

November 5, 2010

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.

Miracles

September 27, 2010

If only you believe in miracles, baby (like I do)
We’d get by

Miracles, Jefferson Starship (1975)

I was concerned about traffic (traffic in downtown Charleston,  South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.

When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.

Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.

I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.

Staying by the bedside.

Waiting for a miracle.

That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.

You’ve come a long way, baby

August 17, 2010

Jill and Shane continue to report on Joshua. Diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), Joshua was delivered at a major medical center and was immediately sent to a Neonatal Intensive Care Unit. By contrast, I was born in a community hospital of less than 100 beds. My grandfather – only an occasional smoker – was so nervous that when I didn’t show up on time, he unwrapped the celebratory box of cigars that he planned to give away and lit up. He was chased outside (smoking was accepted almost everywhere in the mid 1960’s, but a nurse wasn’t comfortable with anyone smoking around the newborns) so he stood under a dogwood tree and smoked until he just had to find out how things were going. Then he jammed his cigar into a fork of the tree and rushed back inside. He never said anything about retrieving his cigar, so for all I know, it could still be there.

Joshua’s parents knew they would be on a roller coaster ride from the moment he arrived. I looked normal. There were no prenatal tests in the 60’s, not even a way to tell if the unborn child was a boy or a girl. Only my mother’s intuition led her to notice that something wasn’t exactly right, and she consulted a pediatrician. The pediatrician that they had used for my older brother was out of town so they talked to the New Guy.

The New Guy realized he was looking at a heart problem but wasn’t sure of the details, so he sent my parents and me to the BIG HOSPITAL 200 miles away. The Doctors at the BIG HOSPITAL figured out that I had Tricuspid Atresia… and stopped. They had never successfully treated a Tricuspid before, so they gave my folks the diagnosis and told them to take me home and enjoy the time I had. I was not long for this world.

New Guy hit the roof. BIG HOSPITAL may not be able to do anything, but he knew of places that would at least try. He found one, and to make a long story short, I was a patient of New Guy until I was 20 years old. The “new” had worn off by then, but he’s one of only two doctors to really understand what is going on inside of me – him and my current Cardiologist. I still see him around town every so often!

By contrast, Joshua was pegged as a Cardiac Kid long ago, while he was still being knit together in his mother’s womb. The moment he was born he was handed off to a skilled care unit. Their only job is to keep him stable until it is time for his repair. And while we thought 200 miles was quite a way to travel to a hospital, that’s no longer true. 200 miles is a short trip.

We’ve literally come a long way.

Back to school CHD Letter

August 9, 2010

Sending your Cardiac Kid back to school, or to school for the first time? Worried about what could happen if there were to be a medical emergency? I would think every Heart Parent would be concerned. Thankfully, the group Hypoplastic Right Hearts has a template for a letter you can send to your child’s teacher to help make sure everyone is on the same page. The letter also gives the teacher more information concerning the child’s heart defect and even includes a few tips about trouble signs to look for.

Feel free to rewrite this letter to fit your and your child’s needs!

9/1/10
Dear Mr./Mrs./Miss___________,
I wanted to first say hello. _______(Child’s name) is excited to be in ____ grade and will
hopefully be a perfect addition to your student body.
I wanted to let you know a little about _________(child’s name). I will send this to
___________(school nurse, gym teacher, and any other relevant staff) as well, so I
apologize if it was passed on but as you will see it is rather important that everyone
dealing with __________(child’s name) is aware of his/her special circumstances.
_________(Child’s name) was born with a Congenital Heart Defect called
__________________________________________________(give child’s diagnosis).
I know, it’s a lot to read, and basically it means, s/he was born missing the right
ventricle, and has “half a heart.” _________(child’s name) has had to have ___(number
of surgeries) open-heart surgeries to reconstruct the pumping function so it pumps to
his/her entire body.
We have been enjoying the time since the last surgery and do not expect any procedures
in the near future (or state if there is a plan for surgeries/procedures during the school
year), but with a condition this serious the future is never crystal clear. He will see his
cardiologist in _________(state upcoming appointments if any) and if anything is turned
up, we will of course let you know if it will affect his school time.
Just to let you know some tidbits about him and some warning signs and things to watch
for. ___________(Child’s name) oxygen levels are slightly lower than that of other kids.
The weather can affect heat/cold regulation so there needs to be the ability to rest when
s/he needs to and hydrate as much as possible during physical activity, this is very
important. I will make sure s/he is appropriately dressed for the weather.
Physically s/he is to be treated as normal as possible. S/He is not allowed hard contact
sports or any kicking, hitting, direct ball contact etc in the chest. Running is fine and most
physical activity is ok as long as s/he can rest if s/he needs it or get a drink of water.
Things to watch for: Nostrils flaring/rapid irregular breathing. Bloodshot eyes or rolling
of the eyes, extreme sweating, redness of the face and body that doesn’t go away with
shade/rest, blueness of the lips or hands or vomiting. Any signs of an adult heart attack,
the dizziness, fainting, pain in the arms, etc. also would of course be signs of emergency.
____________(Child’s name) does have to take ____(list medication), which I give at
home. (Also list any meds that the school will have to administer). I would like to let you
know that aspirin (or Coumadin) increases bleeding and bruising risk.
As I mentioned, I will have spoken with all the staff that deal with ________(Child’s
name), and obviously if s/he is in distress of any kind, 911 should be called before me,
but if s/he’s just “normal” sick, I can be called.
Please forgive me if this comes across as a lot of information. We wanted to provide it so
everyone is on the same page in regards to __________(Child’s name) care. There really
should be minimal impact the heart defect has on day to day life at school, but we felt
very strongly that everyone who is in a caretaking role be made aware of this issue.
We are all looking forward to a fun school year. Thank you so much for taking the time
to read this, and if there are any questions you have, I would be more than happy to
answer them for you. Thank you again.

Sincerely,
MOM & DAD
Home 555-5555
Mom Cell 555-5556
Dad Cell 555-5557

We’ll meet Joshua soon!

August 8, 2010

We have a new Cardiac Kid in our Blogroll, Joshua.The link is to his mom’s blog, as officially Joshua hasn’t made his appearance yet. He’s scheduled to be here on Monday, August 16.

Joshua will be born with Hypoplastic Left Heart Syndrome (HLHS) and his Mom and Dad will be glad to finally meet him… but understandably, they are worried. Any good parent would be! As of right now his first surgery is scheduled for Thursday, August 19.

I am asking each of you to consider passing our story along to your friends, family, and churches. Either just pass our names, a little snippet of what we will be facing soon, or my blog address, his mom writes.

We can do that! In fact, we can do better than that… Everyone take a moment to head over to Joshua’s Mom’s blog and let her know that we’ll all be pulling for them.


Words of Wisdom

July 15, 2010

Question: What’s black and white and read all over?

Answer: Paul Cardall’s new book! 

Paul Cardall, the award winning musician and Heart Warrior who received a heart transplant in September of 2009 has added “Published Author” to his list of accomplishments! His new book Before my Heart Stops: A Memoir is now available for Pre-Order! Clicking the photo will take you to the order form!

Paul is an inspiration – not only a great musician, but a good writer (Check out his blog, Living for Eden). I had the chance to interview him late last year (Click the “Heart Warrior” link to read the interview) and I learned that Paul is both a Gentleman and a gentle man. Even though I have not read his book – Hey, I had to Pre-Order it just like everyone else – I highly recommend it.

Paul has an amazing story to tell. Pull up a chair, have a seat,  and get ready to hear it.

GAMECHANGER

July 10, 2010

You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.


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!

Paying for your surgery with words!

April 13, 2010

Malkolm Poyer is a third grader who needed heart surgery. Born with a heart defect (“…a condition that forced his heart to work much harder than normal to pump blood,” are the only details given by the Atlanta Journal – Constitution) Malkoln needed surgery at Children’s Healthcare of Atlanta to implant a defibrillator.

Malkolm soon announced his own plan to pay for the surgery: He would write an original short story and sell copies on eBay! He’ll even autograph each copy sold! And as his mom writes in the eBay ad, “He is practicing on his own how to write cursive, so his name might even be written in swirly letters!”

Now that is too cool! When the AJC checked on March 24, he had sold 326 copies. But as of 9:00 AM April 13, it’s up to over 1200. And at $10 dollars per copy, it’s still inexpensive. If Malkolm turns out to be the next Great American Writer, watch out! It could be worth some serious money in the future!

And what’s $10 to help a kid out? (Shipping is free, by the way!)

Here’s Malkolm’s eBay ad

(Special thanks to a fellow heart warrior for bringing this to my attention)

Once a Heart Mom…

April 8, 2010

Once a Heart Mom, always a Heart Mom.

Even after your Cardiac Kid survives that first surgery (or surgeries), stabilizes, and seems to be doing well, the Heart Mom gene never turns off. It goes into “Standby Mode” – not completely deactivated, but just below the surface. Your senses will always be heightened, always aware of any change in your child’s condition.

The doctors at Johns Hopkins Hospital had told my parents that if I had any more problems caused by my heart, they would most likely happen in about ten years. Their prediction was almost perfect – I stated having trouble 10 years and one week after my first surgery.

I was 11 years old and in the 5th grade at school, on a cold February day. I was sitting with my back to the wall of the school (I had learned that the wall faced the sun so no matter the temperature, it would be warm!) drawing with my best friend. Neither one of us could draw a straight line – I still can’t – but we were certainly trying!

My stomach had been doing flip-flops all morning. I didn’t feel bad, other than my stomach. But something was really giving it a fit – finally it came to the point that I turned my head, leaned over and puked.

It was all blood.

My friend said that I might need to go to the office (Yeah! I think so, too!) so I did. They called the local Rescue Squad, then called my mom.

The volunteer Rescue Squad building was only 2 miles away, but the members were spread out all over my hometown. They were pretty quick; just a year or two earlier they had won an award for being the best small Rescue Squad unit in the state, but they were still all volunteer. Once you dialed the emergency number – and this was 1977, before 9-1-1 was in use – whomever was on duty had to take the information and then press the big red button on the radio. That caused all the beepers carried by Rescue Squad members to go off. They would then leave their jobs and hurry to the Rescue Squad building, get the ambulance, and speed off. It was usually ten to fifteen minutes from the time you placed the call until you first heard the ambulance siren.

My mom got the call at work, twenty-five miles away. Suddenly her Heart Mom gene flipped to ON and she barely remembers what happened next.

What happened was she ran to the car – an older AMC Ambassador – and put her foot on the floor. Pedal to the metal with the engine screaming, the best cars and drivers that NASCAR has to offer could not have beat momma that day. She drove that AMC Ambassador twenty five miles in a little more than twenty minutes, arriving just behind the ambulance. The ambulance parked in the parking spot nearest the door, but momma skidded to a stop with two wheels on the sidewalk!

Daddy hadn’t arrived yet when I left in the ambulance, but momma was going with me and there was no question about it. She jumped into the ambulance as  they loaded me in, and soon we were moving. The last view I had before they shut the doors was of our car, still sitting there with two wheels on the sidewalk.

How are they going to load the buses? When you are 11 years old these questions are important.

That ambulance ride ended at our community hospital, but my journey would continue to a larger hospital and from there to the University of Alabama at Birmingham for my second heart operation. Mom and Dad were there every step of the way. I’m doing well now, and Momma’s Heart Mom instincts usually don’t come into play. I can still set them off – just let me forget to set my alarm clock and not get up at my usual time!

Once you are a Heart Mom, you’ll always be a Heart Mom. No matter how old your Cardiac Kid (or Heart Warrior) is!