Archive for the ‘Illness’ Category

A Weighty Matter

November 17, 2010

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.

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Flu!

November 3, 2010

Doctor: “What’s wrong with you?”  Patient: “Flu.”  Doctor: “Looks like you crashed!” – Old Joke

Ready for Cold and Flu Season?

Colds and Flu can be rough on someone living with a Congenital Heart Defect. We tend to heal slower than others, and with our less than perfect Circulatory Systems, chest colds can be a nightmare. Whenever I catch a cold, it’s usually going to hit me harder than the next guy. The same cold that will keep him in the bed for a day could keep me in the bed for several days. That is, if I can lie down. It is liable to clog me up to the point that when I lie down, I feel as if I am drowning. Often I wind up sleeping upright in the big recliner in the living room, tucked under a blanket.

Heart parents today have a yearly debate, trying to decide how to care for their child during the winter months. Some parents just bundle them up tighter than usual, others decide that the best thing to do is to go into lockdown, rarely coming out during the winter months. My parents were of the “bundle him up” group. Not because of any instructions from my Cardiologists, but rather the lack of instructions. I was born in 1966 and most of my childhood that I can remember occurred during the 1970’s. The ’70’s were “back then” as far as Congenital Cardiology was concerned – no Pediatric Cardiologist had a good answer for most of my parent’s questions because there weren’t that many Cardiac Kids around. The usual answer was “I don’t know!” or something close to it.

I had a Cardiologist who wasn’t much on the bedside manner – a visit to his office was almost like playing hockey and continually being slammed into the walls – but he was pretty smart. He told my parents that “If you want him to be a normal child, you have to treat him as close to normal as possible.” So my folks just let me go – with limits. During winter I had on so many clothes I felt like a turtle; if I fell over there was no way I could get up. I’d just lie there and roll around on the ground. If someone at church was sick I had better not sit near them, or move as soon as I realized that they were ill. I missed a few services over the years when several people had colds, and even missed a few days of school for the same reason (which highly irritated one teacher!) But I muddled through. I caught the occasional cold and suffered through it, but that is a normal part of childhood.

I can’t say this is what you should do, only your Cardiologist can advise you on what to do during Cold and Flu Season. And be sure to ask your Cardiologist – your Primary Care doctor will have good advice, but you have a heart defect. Ask the doctor who specializes in hearts, he or she will have a better answer.

Most of the time – not always – the Flu Vaccine will be recommended for us. If you are in doubt, again – ask your Cardiologist. As a general rule we’re told to get “dead virus” vaccinations. At the current time vaccinations in the United States can be either “dead virus” or “live virus”. Live virus vaccinations have actual, living virus cells in them – they are weakened, but they are living. With a dead virus vaccination the virus has been deactivated. Even deactivated, the body still realizes that a case of the Flu is present and starts building antibodies to stop it. As far as I know, only the FluMist vaccination is a live virus formula.  Be certain to inform the person giving the vaccine that you have a chronic health condition and need the dead virus formula.

While you should always be cautious, you should never be scared to live your life!

Saving Grace

August 20, 2010

To the tune of Saving Grace by Everlast:

Two days ago she gave birth
Momma’s little girl fighting for all she’s worth
Don’t say her child isn’t perfect

So pretty & oh so bold
Got a heart full of gold but her hands are so cold
She said “I don’t even think that God can save her.”

Are we gaining ground
Am I losing faith
Doc can you help save my little girl Grace
I’m so thankful for this gift my Angels gave me

Don’t wanna leave
Won’t go home
Worried her child will be so alone
Just waitin’ for a miracle

Street wise from the boulevard
Jesus only knows that she tries too hard
She’s only tryin’ to keep the sky from fallin’

Day sixteen in Intensive Care Hell
Day or night she can’t tell
You think she’s strong but she’s just surviving

Operating room like a gambling hall
Walk in and bet it all
Surgeon smiles and says “She’ll make it.”
Throw your hands up and scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Amen!

One time around the sun
Another year older and your work ain’t done
It’s time to write the final chapter

Tell your story and tell it true
Tell everyone what your Grace went through
Until this disease is no longer

Then we’ll all scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah…. Amen!

You’ve been warned

July 6, 2010

Hey Heart Defect! We need to have a talk.

Yeah, you and me – I just wanted to warn you that things are about to get ugly.

I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.

I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.

But I’ve learned better, and while you weren’t looking, I started paying attention.

I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.

I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up.  Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.

And from now on we’re going to be playing by my rules.

New gene therapy for Heart Failure shows promise

June 28, 2010

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.

Patients of Wal-Mart medical?

June 21, 2010

OK, this is one I’m not really sure I want to think about just yet.

Wal-Mart (yes, Wal-Mart!) is getting into the health clinic business. The company that brought you $4 generic medications is planning to open walk-in medical clinics, usually staffed by Nurse Practitioners, in many of their new stores.

Before you start thinking I’ve lost my mind, look at this from the point of view of  Wal-Mart High Command: 130 million people a week visit a Wal-Mart store.

130,000,000 each week. If I did the math right, that’s almost Thirteen Thousand Wal-Mart visits per minute each week.

Wal-Mart plans to have 400 clinics open by 2011, and they expect 2,000 clinics to be open by 2014. With prices for a clinic visit expected to be about $55 (per visit), that’s a pretty good deal. And Wal-Mart is predicting that by 2014, there will be at least 11,000 patient visits to their clinics. These aren’t hospitals,  of course – they aren’t even Urgent Care Centers. But for low-level needs like Flu shots or when allergies get the best of you, they could be exactly what you need.

And Wal-Mart is a game changer. At one time the only “groceries” you could find in a Wal-Mart store was the candy located in the checkout aisle. Now they are one of America’s largest grocery retailers. So when Wally World gets involved, this might be the start of something very big.

Time will tell.

In case of Emergency, Break Glass

May 18, 2010

Note: This is the entry I posted last night. It was active for about five minutes before I pulled it down to tell you about Gabriella’s heart transplant. (She’s awake and doing well, at last report!)

The day is going normally and suddenly you (or your Cardiac Kid) have a problem. And it’s not a stubbed toe or a skinned knee, it’s a We need to go to the hospital right now problem. What do you do?

Your first move should be to grab your Heart Book. What’s a Heart Book? Glad you asked!

One of the most frustrating things about Congenital Heart Defects (CHDs) is that they affect each one of us differently. My Atrial Septal Defect (ASD) is slightly bigger/smaller, it is in a different location in the Septum… whatever. The end result is that two people with the same defect rarely have the same symptoms.

And you need to assume that when trouble happens, you’re going to be quickly overwhelmed. You’re suddenly stressed out, you aren’t thinking clearly, and if you are the patient you could be in pain. No matter why, just assume that mentally you aren’t going to be much help.

So the first thing you should do (or do after calling 911) is to grab your heart book. Since CHDs affect everyone differently, your treatment plan is going to be different – and the information your doctor needs is in your heart book.

First, your book needs to contain all your important personal information: Copies of your driver’s licence, birth certificate, insurance policies, Organ Donor Card… what ever you need to prove that you are you, that goes in the front of your heart book. If you travel internationally it wouldn’t hurt to put a copy of your passport in there, also.

Next, you need a drug chart. CHDers medications are usually pretty involved; so I’ve included one as a .pdf file in the blogroll. (or you can CLICK HERE to download it) Save a copy to your computer (you’ll need another copy when the doctor changes your meds!) print out a blank copy and fill in your medications and dosages. Keep a current copy in your Heart Book.

Have a page outlining your heart defect, the name, address and phone number of your cardiologist, and general treatment options. Also be sure to note what shouldn’t be done. Saline? Ok, but I’m on a low sodium, controlled liquid diet, so I’ll probably need an extra dose of diuretics later. Keep pumping me full of saline and things might get ugly. MRI? No way Doc, I have a pacemaker! Echocardiogram or CAT scanner for me!

Get your cardiologist to draw a diagram of your heart with all the surgical corrections. Speed may be critical when you have an emergency, so don’t make the Emergency Department doctors get an x-ray to figure out what is going on inside your chest.

You can also include EKG forms in your folder, that will be helpful. You’re going to have a strange beat pattern, so it will help if you have an EKG strip taken at a regular checkup, so they can see what your heartbeat normally looks like. Getting an EKG strip isn’t hard – the next time you have one done, just ask. Some will just run two strips and give you one, others will photocopy the original. You may have to sign a form that says you asked for it, in case there is every any question, but there shouldn’t be any problems getting your EKG. Be sure to update it occasionally and keep it current.

Now here’s the hard part – we’ve got to take this information and condense it. Remember, this is your secret weapon that you only use when there is an emergency, so we don’t want to present the doctors with a copy of War and Peace. You need to get the important information across clearly, concisely, and quickly. Ask your doctor. Better yet, catch an Emergency Department doctor when he isn’t on duty and ask him/her: If I came into your hospital with this information, would it help you do your job?

I hope this information will help you put together a terrific Heart Book that will be invaluable.

And I hope you never have to use it.

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!

The Other Side of the Coin

April 7, 2010

Despite the fact that the overall time doctors and patients spend discussing medication is going down, there are still doctors out there that will go to bat for their patients. When you find one, grab on and don’t let go… an intelligent, proactive patient coupled with a doctor who goes above and beyond the call of duty are hard to beat!

That’s one reason I love my Adult Congenital Cardiologist and his team at Emory University Hospital. There have been some changes recently that make it a little harder to get in touch with them than in the past, but these all seem to be because more and more patients are being seen. (That’s great news! More and more of us CHDers are hanging around!) But they will get back in touch with you, especially if it seems that a problem is developing. I’ve had the Nurse practitioner that works with my doc to call me at 8:00 PM at night – say, don’t you people ever go home?!?!

Laurie Edwards knows just how important it is to have a doctor who is on your side, and she give us a good example – not by bragging on a good doctor, but by showing us the exact opposite. In this case, Laurie has to hold her tongue while a friend lives the nightmare.

The Professional Patient has a good post titled Accepting that you might be like this forever. “Congenital” means occurring at birth, so someone with any kind of congenital problem needs to drop the word “might” from that statement. Even if you have a corrective procedure, you’ll probably have residual effects and need to be monitored all your life. A doctor/advocate can help you not only with your general health and medications, he can go to bat for you when questions arise about your health status. For example, try to apply for any kind of medical coverage with a pre-existing condition! Even if you are successful, there are going to be forms to fill out and examinations, and someone is going to want to look at your medical records. It is going to be a pain in the *ahem* – but having a medical professional who will handle their part of the paperwork quickly and efficiently will make the road a little smoother.

When you find a good doctor – grab him and don’t let go!

Ask Questions!

April 6, 2010

Here’s a scary report, courtesy of Kevin, MD: Patients don’t ask questions of their doctors.

While there are a precious few patients who are totally involved in their health care, the vast majority just take their doctor’s advice at face value. A 2008 study found that when 181 people were prescribed a new medication, they asked a total of 199 questions (or made a comment) about the new drug. That’s an average of 1.09 questions/comments per patient!

What’s worse, the same study showed that the doctors didn’t talk, either. The average office visit was 15.9 minutes, and the patient and doctor spent an average of 49 seconds discussing the medication. The length of discussion ranged from a high of 351 seconds (5.85 minutes) to an amazing 1.9 seconds! (What can you say in 1.9 seconds?!?!)

As noted before, patients who are more involved in their own health care ask more questions. That’s you. Having a Congenital Heart Defect means that you are, for all intents and purposes, a patient pool of ONE. Others may have the same defect that you do, but no CHD ever treats its owner like everyone else.

As I’ve written before, I have a hernia. It’s usually well-behaved, but occasionally it will get pretty angry with me. A hernia repair is a fairly simple operation these days, and usually doesn’t even require an overnight stay… except for me. My Cardiologist does not want to authorize the operation, instead asking me to just fight through the bad times by prescribing couch time and TV. “I could spend a day explaining your anatomy to the surgical team,” he has said. “And they still wouldn’t understand it.” It’s not that he can’t, my doc has a couple of teaching awards to his credit. I’m complicated.

So if you don’t know what’s going on with your body, it is time to learn. And ask questions – what is this medicine supposed to do? What are some of the side effects? What do you think would happen if I decided not to take this drug? Are there any other options available? All of these are legitimate questions – and if your doctor gives you an answer in 1.9 seconds, ask another question. You can control how long he talks to you. Conversely, you can find a doctor who will spend the time needed to help you make a good decision.

It’s your body, and the medical decisions you make affect you, and rarely anyone else.