Archive for the ‘Cardiology’ Category

Replace the PulseOx test for CHD!

September 30, 2010

Just a few weeks ago the Pulse Oximetry test (also known as PulseOx) became part of the Newborn Screening Uniform Panel. In a post on this blog, we discussed how the PulseOx was a good test, but not perfect.

But what if we could discard the PulseOx, in favor of a better test?

Hot off the press – really, it hasn’t even been printed yet, it was electronically published before a print version is available – is a study by the University Medical Center in the Netherlands. Appearing in the European Journal of Clinical Investigation is a study (CLICK HERE to read the abstract) showing that certain biological markers do show up more often in children with Congenital Heart Defects! In the study, higher concentrations of S-adenosylmethionine, S-adenosylhomocysteine, and folate RBC were observed in children with heart defects.

(Don’t ask me to explain all that; it’s DNA and Molecular Biology with a little Chemistry thrown in for good measure!)

Could this test replace PulseOx? Perhaps… but not tomorrow. The study was a relatively small study, with only 329 children participating. (143 CHDers with 186 heart healthy children as a control group) The researchers themselves even stress that more research needs to be done.  But we could very well be looking at the first steps to a foolproof, 100% accurate “GOTCHA!” test for heart defects. And by studying the DNA changes that occur with a CHD, we could unlock the secret to how heart defects occur… and stop them before they begin!

Special thanks to Amy Basken for bringing this research to my attention. Amy is tireless, working for several different CHD groups. Today she represents Mended Little Hearts!

Don’t you let my chest be hurtin’!

September 28, 2010

Another gem from the files of Dr. Wes:

The doctors and staff of Vanderbilt Heart and Vascular Institute in Nashville, Tennessee are a crazy bunch!

The Nashville Heart Walk (sponsored nationally by the American Heart Association) is coming up on October 2nd, and Vanderbilt Heart is the local sponsor. They could have put an ad in the paper, a few radio ads, and even a TV commercial or two. All that has been done before, and it works. Years of advertising have proven that.

But Nooooooo…. the Vanderbilt team created a MUSIC VIDEO!

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

What is a Health Registry?

September 19, 2010

Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.

So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.

A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)

No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.

The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.

So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)

What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.

Hearts in the fast lane!

September 17, 2010

Life in the fast lane

Surely make you lose your mind

Life in the fast lane

Everything, all the time!

Life in the Fast Lane, The Eagles (1977)

I found this information through Facebook friend Mary Ellen:

London’s Great Ormond Street Hospital (which has the unusual acronym GOSH) had a problem. One of the most critical times in heart surgery is the transfer – the process of moving a patient from the operating room to the recovery room. It is not a simple task of just moving the patient from the operating table to a gurney and rolling it down to the recovery unit; monitors have to be unplugged and reconnected to portable equipment, IV’s have to be prepared for transport, and any life support must be switched to portable units. It is a complicated, involved job that has to be done perfectly – the first time, and every time.

Patients weren’t doing so well, and some were running into real problems after surgery, so GOSH Surgeon Marc De Leval asked a group of “Human Factor Specialists” to study a series of Arterial Switch operations and try to determine what the problem was. The Arterial Switch is one of the more difficult Congenital Heart Surgeries and one that seemed to be causing more than its fair share of problems.

The evaluators determined that both the surgical unit and the recovery team was up to the task; the problem was based in the transfer. Too many things to do, too many things that could be missed, and it could be slow. But it had to be done slowly and carefully, because if you missed something, things could go very wrong for the patient. So even though they recognized the problem, the surgeons of GOSH seemed to be unable to do anything about it.

Until the day when a surgeon and the head of the Pediatric Intensive Care Unit were watching TV. What they needed, they realized, was a team approach – a group of people who could work together to get the job done correctly and the patient on their way to Recovery.

So they asked a Formula One race team for help.

Americans (especially those of us in the South) are more familiar with NASCAR racing. A Formula One pit crew is just as fast as their NASCAR counterparts – and considering that Formula One allows more people working on the car simultaneously, they are probably better.  So the race team came in, and spent some time with the hospital staff. The speedsters made many suggestions, and while not all of them could be implemented, several important ones were: One person was placed in charge of the transfer process and everyone involved was trained on their new task. Problems don’t just happen, they learned. A small error that slips by can turn into a larger problem, which can become an even larger problem. So if the small problems are eliminated, the larger problems should not occur.  They were also trained to have clear, concise plans on what to do if something went wrong. “Plan B” works best when everyone is familiar with what Plan B involves.

So far, the “Pit Stop” approach is working. GOSH reports medical errors that occur during the transfer period are down 30%!

What you need in a hospital

September 16, 2010

In an earlier post I discussed what we need in a Congenital Heart Surgeon. Reader Heather let the cat out of the bag by mentioning that wasn’t all you needed… you need a good hospital, too.

How true, how true. As I have said many times before, the doctor you need does not practice in a town of 5,000 people. There aren’t enough patients in the community to allow him or her to sharpen their skills. Skill partially depends on volume – you do something often, you do it right, and you evaluate your results (and you keep evaluating them, constantly). That’s the only way to improve. You learn from someone who is experienced, then you do it yourself, knowing that anything less than 100% is unacceptable. As you gain skill, you learn how to do it better and faster.

That same fact applies to the hospital. You can have the best surgeon that ever put on a mask; but if the hospital you are in has very little experience with caring for post surgical patients, there could be problems. That applies to the type of surgery you are having, not to all surgeries. Caring for someone who just had heart bypass surgery and someone who just had congenital heart surgery is a lot different. Studies prove that the more experience a facility has, the better the outcome.

I love my community hospital. We have about 150 beds and I’m on a first name basis with a lot of the people there. I know the doctors and the nurses not only from the hospital, but I see them in the community. I saw one of my favorite nurses in the grocery store just last week. But that doesn’t mean I’m going to let them do heart surgery on me – they don’t have the skills. They are well-meaning people and I am sure they would do their best, but if I had surgery there, I’d probably come home in a box. We can’t have that, I’m claustrophobic!

A few months ago there was a plan being considered by England’s National Health Service to consolidate the number of Pediatric Heart Hospitals. A good number of people were understandably upset but the reasoning is logical: some of the units performed a relatively small number of surgeries. Consolidating the number of centers may make it inconvenient for some, but it will make the overall results better.

For us here in the States, that probably means a trip to a large city hospital. There are exceptions – Durham, North Carolina  (the home of Duke University Hospitals) is fairly small and Rochester, Minnesota (Home of the Mayo Clinic) is also a small city. But in most cases, we’re heading to The Big City – New York, Los Angeles, Nashville, Boston, Birmingham, Kansas City, Denver, Atlanta. These are only some of the destinations whenever the Heart Warriors I know head to the doctor. “Medical Tourism” is all the rage right now, but to us its old news. The average Heart Warrior is also a Road Warrior; we’ll go to where the best hospitals and doctors are.

And in the words of that great philosopher, Bruce Hornsby – That’s just the way it is.

He earned it!

September 14, 2010

A mechanic is making small talk with a customer as he adds up the bill, and discovers that the customer is a heart surgeon.

“Doc, I just don’t get it,” the mechanic says. “I can take out a piston and grind it down to fit better. I clean dirty valves, I fill the engine with oil, and I can work on the electrical system. You bring me an engine that won’t run correctly and I can fix that thing so that it runs perfectly. We do the same job, but you make four times the money I do! I can’t understand that.”

“Well,” the heart surgeon said. “I normally do my work with the engine running.”

Funky Heart PLUS!

September 13, 2010

Be sure to check out Adventures of a Funky Heart! on Facebook!

You will still be able to read Funky Heart! posts on Facebook, but the page offers something just a little bit different. I check over one hundred online resources daily searching for items to write about. I find a lot of things that are interesting, but that aren’t suitable for posting here. Usually, the reason is simple – it has nothing to do with Heart Defects.

I used to just save the links and hope I could use it in a post later; but more often than not time would pass and I would just have to erase the link. Good links are like homemade bread, they are best when they are served fresh!  So the Facebook page is sort of like “Funky Heart PLUS”… You get the “regular” Funky Heart posts and you get those non-heart related links that I think are so interesting! There’s really no rhyme or reason – you might see a link to the latest in Stem Cell news, a blog post that I liked,  or even an article about the very first Heisman Trophy winner… who gave his Heisman to his Aunt. She used it as a hat rack.

So look us up on Facebook at THIS LINK, check out all the cool links on the wall, and hopefully “Like” the page and hang around! Your coffee break conversations will become a lot more interesting!

Trouble coming!

September 1, 2010

I love the idea of EchoJournal; if you find something unusual on an echocardiogram you can upload the visuals, and then everyone else can “look over your shoulder”, so to speak. They can learn from you, and you can learn from them. If I were an Echo Tech I think I’d be checking this site out every few days!

For example, take a look at these two links. (HERE and HERE) They are both Echocardiograms of someone’s Left Atrium, and they have a serious problem: It’s huge! In fact the doctor who submitted it notes that this Left Atrium is 6.5 centimeters by 9 centimeters. For a male, the average size of a Left Atrium is about 40 millimeters in diameter.

Holy cow! I hope that person got the underlying problem fixed and that Atrium back down to a smaller size. Having an Atrium blow out is not like having a tire blow, you don’t just pull off the road and change it!

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!


Follow

Get every new post delivered to your Inbox.

Join 31 other followers