The 2010 Funky Heart (and Friends!) Tour!

The Funky Heart and his friends are fighting Congenital Heart Defects (CHDs) from sea to shining sea! Join us at any one of these events!

Funky Heart in Florida! February 13, 2010 – I’ll see you at the Broken Hearts of the Big Bend Regional CHD Forum!

Paul Cardall in Concert! February 15, 2010 in Salt Lake City, Utah! Purchase your Tickets online here! Tickets go on sale November 2, 2010, 1000 Mountain Time (1700 GMT)

Hope for Hearts CHD Benefit Concert! February 28, 2010 in Tampa, Florida! Click Here for ticket information!

Funky Heart in DC! April 22, 2010: Lobby Day to support the Congenital Heart Futures Act, Washington DC! CLICK HERE TO REGISTER FOR LOBBY DAY!

Sherlock Holmes, Consulting Detective

Trisha Torrey gets it.

We don’t see eye to eye on everything, but Trisha gets it: The days of Marcus Welby style healthcare are over – if they ever really existed at all. So remember this rule:

You are on your own out there.

So we have to become what Trisha calls “Empowered patients.” Unusually, she’s not a big fan of her own word – “Empowered” tends to imply that someone gave you power. Not so… you have to take it.

And how do you take it? Remember the cliché “Don’t hate the player, hate the game”? Let’s change that just a little bit: Don’t hate the game – learn the game, and play it better!

So how do we play it better? Trisha has several points, but it all comes down to one general idea: Take control.

Whatever is going on is happening inside your body. Taking a pill affects your body. Having surgery leaves scars on… your body. So guess who has the biggest stake in taking care of you – YOU!

It’s your body, your health, and your responsibility. Get in the game. Take control of your own health – learn what is going on inside of you, what your treatment options are, and what other choices you may have. Learn, learn, learn. Become your own medical detective!

You know my methods, Watson.  There was not one of them which I did not apply to the inquiry. – Sherlock Holmes

Taking Tallahassee by storm!

I am really looking forward to the Regional CHD Forum sponsored by Broken Hearts of the Big Bend. We’ll be at Sittig Hall in downtown Tallahassee – not very far from the State Capitol building!

Just like at Lobby Day and the Duke CHD Symposium, I plan to liveblog the event. Check Adventures of a Funky Heart! around 8:30 AM Eastern Time Saturday morning; If you see a new post, I’m hooked in to the Wi-Fi and I’m blogging! I’ll add information pretty often. Just keep refreshing the page, and you can keep up with events LIVE!

And if there’s no Wi-Fi available, check the blog that night. I’ll be keeping notes and will type up a post later. I’ll also post the text of my presentation after I present it. (Wha..? You expect me to blog AND speak at the same time? I’m not that good!)

I also have a little surprise for you -

there might…

possibly….

with a little luck….

be some VIDEO!

Video depends on if the unit actually does what the manual says it will do, so it’s still up in the air!

The Forum is going to be a lot of fun… and if you live in the area and fight CHD, the organizers would love to have you join their team! So if you like what you see, check them out!

For Jim

A true friend is gone.

Jim Wong, who I highlighted on this blog way back in August of 2008, lost his battle with Thyroid Cancer Saturday (February 6, 2010) about 6:00 PM Eastern Time.

Jim was the Moderator of the Adult Congenital Heart Association’s (ACHA) message board; he helped select me as the second Moderator and got me up to speed on how things worked. Not just on the message board, but how hearts worked, how Congenital Heart Defects (CHDs) work, and even a little about how life works. And even before that, he was one of the first people I physically met after joining the ACHA in 2006.

If you didn’t know him, he could be intimidating. He was Jim, but his official title was James Wong, PhD. And you wouldn’t think that a PhD would have much patience, or suffer fools gladly, but we got along well. I think I’m the biggest fool to ever come down the pipe – I like to laugh, and cut up, and enjoy life.

PhD’s are supposed to be so serious. But Jim took it all in stride; he was a rock – for me and for a lot of other people. I think that no matter what he did or where he went, down deep he realized he was just someone looking for answers. And when he found them, he wouldn’t hesitate to share with the rest of the CHD community.

Jim’s friends will be glad to hear that his heart hung in there until the end. Let the record show that Jim Wong, PhD, never lost his battle with his heart defect.

I’m still looking forward to going to Florida and speaking at the Regional CHD Forum; it’s going to be a wonderful trip. But right now I’m taking a moment to remember a friend.

Rest in Peace, Jim.

SQUIDs could replace PulseOx!

LATE ANNOUNCEMENT: Hypoplastic Right Hearts will sponsor a showing of the movie Hearts of Hope at the Children’s Hospital of Denver. The showing will be at 2:00 PM Denver time on the second floor in the Mt. Oxford Room.

Pulse Oximetry tests on newborns may soon be a thing of the past.

Researchers at The University of Leeds have developed a new portable magnetometer that is so sensitive, it can detect heart abnormalities in a fetus. The new unit is smaller, faster and cheaper than other magnetometers that are available, and it is better - it can detect heart problems earlier than any technology now in use.

The human heart produces a magnetic “signature” as it beats, one that can be detected with the right equipment. A magnetometer measures magnetic fields, and this one is a special type of device known as a SQUID (Superconducting QUantum Interference Device) that is super-sensitive. In fact, the reason that they are not used more often is that they are too sensitive – the patient has to be inside of a magnetic shield or the magnetometer might pick up other magnetic fields. The new SQUID gets around that problem by better shielding the detector unit. It is also simple to use, so almost anyone with the proper training can conduct the test. (Though I am sure that they will still have to be read by a Magnetocardiologist.)

“We don’t do PulseOx tests anymore,” A nurse may tell you one day. “The prenatal SQUID test tells us everything we need to know.”

The Early Special at the Funky Heart Cafe

Let me remind you about two events that you want to be a part of if you live in the Palmetto State: Heart Parents Justin and Shannon are going to be hosting a Congenital Heart Defect (CHD) Awareness Breakfast this Saturday (February 6, 2010) at the Fatz Cafe on Broad River Road in Irmo, South Carolina. If you aren’t from around here, just head for the center of the state: Irmo is a suburb of our capital city, Columbia. The breakfast starts at 7:30 AM and continues until 10:30 AM, and for $7.00 you can get Pancakes (Butter and Syrup will be available, but remember, the arteries that get clogged will be yours!) Sausage, Fruit, and a beverage. And your $7.00 will go to the Medical University of South Carolina (MUSC) for CHD research! Their son Derrick is recovering from heart surgery (Less than 3 weeks ago!) but he says that he will make an appearance if his busy schedule allows. Hey, he’s lost some important “Kid Time” during his hospital stays, he’s still trying to catch up! Derrick is also a coin-carrying member of the Funky Heart team; ask him nicely and he might show it to you.

Once you have eaten so much that you need a hand getting to your car, drive over to The Inn at USC for the Palmetto Hearts CHD Conference! The Inn at USC is located at 1619 Pendelton Street, which is downtown. You could use a good walk after that big breakfast you just ate, but Fatz Cafe and The Inn are too far apart. Park up the street and walk the rest of the way.

The CHD Conference starts at 1:00 PM and lasts until 5:00. Featured will be several doctors from MUSC and Kim Russell, an adult CHD Survivor and author of the book In a Heartbeat. I’ve met Kim; she’s a classy woman and a strong advocate for CHD Survivors.

It’s going to be two great events – and I can’t be at either one of them, due to previous obligations. So it’s up to you to go in my place!

Never trust your heart to the Network News

Did you happen to see NBC’s The Today Show segment concerning catheter ablation of atrial fibrillation? It looked all snazzy and cool, and the patient was cured!

Or was she? As will often happen, TV news manipulated the presentation for maximum effect. In other words, they lied.

You see, there are different types of atrial fibrillation (A-Fib; or AF).You can also have Atrial Flutter, which is what I have. Flutter responds much better to an ablation procedure. The medical literature reports that Flutter patients have better success rates – Paroxysmal AF (Flutter) patients can have a successful ablation 38% to 78% of the time, with most programs reporting a success rate of 60% or higher. (The awesome Dr. Wes has the numbers). For persistent AF (A-Fib), the numbers are lower: 22% to 45%; most centers reporting 30% or less.

Bummer! However, there was NBC’s “expert”,  Dr. Nancy Snyderman, standing there telling us how great this new technology was.  Nancy must not have read the Medicare report that said more research was needed to see how effective it was in the Medicare-age population.

Also, an ablation is a two- step process. Once the catheter is in, the first thing doctors do is stimulate the heart to find the source of the A-Fib or Flutter. Once that is done, then you use the catheter to deaden the source and prevent the irregular heartbeats from happening again. Yet there was Dr. Snyderman, saying that the procedure was a success before the mapping procedure had even been completed.

Here’s the bottom line: Medical advances are the result of a lot of work and slow, steady progress. unfortunately, people want results now.  It doesn’t always work that way… in fact, it rarely works that way.

Remember, the public relations department is trying to sell you something, and they usually don’t let a little thing like science get in the way. A few weeks ago an article appeared that said that pomegranates could help reduce breast cancer. Adding pomegranates to your diet would help you avoid that dreaded disease.

But what they didn’t say was located further down in the story:

“It’s not clear that these levels could be achieved in animals or humans because the (compounds) are not well absorbed into blood when provided in the diet.”

Say what? This only works in a test tube? It hasn’t been tested in animals or humans? Obviously someone is trying to sell pomegranates.

TV based health reporting is usually limited to one 5 minute segment per newscast and is almost always upbeat. (This is a reason why Congenital Heart Defects are rarely covered by TV news; the issue is much too complicated cover in 300 seconds.) So before you get too excited about the latest “We’ve found the cure for cancer!” story being broadcast on the six o’clock news, take a deep breath. Do some research.  Find out the advantages and disadvantages of the new treatment. If it’s the real thing, it will still be there after you’ve taken the time to research it.

We can fix that!

I keep writing about advances in cell therapy, cell transplantation, and cell replacement options that are coming in the future. You might think that this is all dream technology – the kind of ideas you have that always start with “Wouldn’t it be nice if…”

All this is exciting stuff, but it won’t be ready tomorrow. Medical research takes time – as much as you want something to work, you can’t rush it. I am sure that Heart Defect researchers know the percentages, they know that roughly 105 people per day are born with a Congenital Heart Defect (CHD) – but they also know that if they don’t get this right, they could inadvertently make a bad situation much worse. And sometimes “getting it right” means trial on human subjects. Early versions of the Fontan Procedure didn’t live up to expectations, but further research and study has made it into a better operation. Sometimes you just have to hold your breath and step into the unknown.

Since we don’t hear that much about medical research until something hits (or goes wrong), you may wonder who’s out there? How many companies are looking for answers? I can’t give you a total number, but a recent report, Tissue Engineering, Cell Therapy and Transplantation: Products, Technologies & Market Opportunities, Worldwide, 2009-2018, gives us some good information about tissue and cell research. The numbers are staggering: In the report, 148 companies are profiled (Click here for a list) and they account for a total of over $1.5 Billion US Dollars spent annually.

Whoa!

The report isn’t for “normal” people – it’s intended for corporations and foundations that might want to drop a spare million dollars or so into a research project but aren’t sure where to start.  (Of course, the only thing you need to obtain a copy of the report is $2,950!) Looking over the detailed table of contents is a real eye opener, it contains not only a list of companies working in the field but also worldwide research goals. There is not a research project titled “Limiting/Curing Congenital Heart Defects” listed anywhere, but CHD related projects are widespread. One of the major goals is combating Congestive Heart Failure (CHF) – Heart Failure often accompanies a CHD, and reducing or eliminating CHF will really cut down on some of the healthcare costs we all endure. More than half of my medication is designed to keep my CHF at bay. Another research goal is replacing heart valves, and a third is heart transplantation – issues that CHDers could very well have to deal with.

And that’s not all. Looking down the list of possible therapies, you notice that someone has a plan to replace or repair almost every body part! I’m hitting the “ol’ man” stage and my bones are beginning to creak, I’d like to have a talk with some of these people.

So take heart – we’re not out here alone.

In His Own Words

A few days ago I wrote about the Wake Forest Institute for Regenerative Medicine growing organs for transplant. Here’s the director of the Institute, Dr. Anthony Atala, talking about some of the tissues and organs being created in his lab right now. (Wait until you see the heart valve!)

Get ready to be amazed.

Original source: KevinMD.com

MRI + Metal = bad things!

I can’t have an MRI because of my pacemaker. In fact, when I was Duke Children’s Hospital for the Saving Little Hearts CHD Symposium, one of the doctors reminded me to avoid MRIs and implied that it might not be safe for me to even be on the same floor as the MRI scanner!

MRI stands for Magnetic Resonance Imaging, and the magnets are large – often weighing in at over one ton. The rule is simple: No metal is allowed in the MRI room. When the rule is broken, bad things happen:

Patient A was wheeled directly into the MRI room… and the metal wheelchair-gurney was immediately forcibly attracted by the magnet against the outer core of the magnet housing, crushing the left lower extremity of Patient A and trapping the patient between the magnet and the wheelchair-gurney.

Ouch.

I have no idea what would happen if I were to enter an MRI suite – would I be pinned to the side of the MRI until someone deactivated the magnet, or would it literally be ripped out of my body? I don’t know, and I don’t want to find out! Either way, they use a small magnet to communicate with your pacemaker, so at the very least you will have to have it examined and reset. If that is all that happens, consider yourself lucky – it almost certainly will itself be magnetized and you’ll have to get it replaced.

So when they ask about metal, don’t forget to mention your pacemaker… and your sternum wires!

Like a Rock

I was eighteen
Didn’t have a care
Working for peanuts
Not a dime to spare
But I was lean and
Solid everywhere
Like a rock

– Like A Rock, Bob Seger

I think readers of this blog will agree with me when I say that my life has been a roller coaster. Not the ups and the downs, everyone has those, but it has certainly been a wild ride. In and out of hospitals, making it through three heart operations, having a cyst taken out of my brain, Endocarditis, a stroke, getting (and replacing) a pacemaker…a lot more than the average guy. I’m also a part of medical history: I was only the fifth Glenn shunt successfully done at Johns Hopkins, and the first to be physically active.

I’ve been to Washington DC, Durham, North Carolina, and Boulder, Colorado to support Congenital Heart Defect (CHD) survivors; I’ll be in Florida in a few weeks and then back to DC. In late July I’m planning to be at Hearts Re-United 2010, a CHD conference in Houston, Texas sponsored by Hypoplastic Right Hearts. And hopefully I’ll be able to do more advocacy in the future.

Thankfully, I only have a few regrets, but I was reminded of a major error this past week. The Alumni magazine of my college interviewed me for a series of profiles that they are writing (they publish once a quarter, so I have no idea if/when it will be published) and they asked me when I got involved in advocating for other Survivors of Heart Defects. And I hate to say that I never did a thing for CHD while I was in college.

The problem was that I was too healthy. My second heart operation was in 1977, and from then until after I graduated college in 1988, I was like a rock. I only had one problem with my heart that I can recall (and I did that to myself). I went into the hospital overnight for a Catherization but that was after I decided to have Surgery Number Three, so that incident wasn’t a medical crisis. I took an average of one pill a day, not the bucket of medication that I take now. I rarely thought about my heart, and because of that, I never did anything to support others living with Congenital Heart Defects.

And that’s a crying shame. We only had about 2,000 resident students, so becoming a campus leader would not have been difficult. And even if I decided not to do anything on campus, there was a pretty large regional hospital located right across the street. I could have easily offered to assist them in some way.

I’d love a chance to go back and do something regarding CHD at my college. A lot of the students will be married in a few years, and expecting children not long after that – they’re just the group to you want to try to reach.

And if the opportunity comes again, I won’t let it slip by.