Archive for the ‘Research’ Category

A Cure for Heart Defects!

November 26, 2010

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

 

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year.  Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science.  And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

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Backscatter Scanners and Pacemakers

November 16, 2010

As you may remember, I almost flew to Atlanta for the recent Heart Walk, but changed my mind when my parents decided to attend, too. While getting my gear organized for the trip I thought about the new “Backscatter” full body X-ray scanners being installed in airports: how do those things interact with pacemakers? The Transportation Security Administration (TSA) recommends that those of us with Pacer Power avoid the metal detectors, and since I got my pacer I’m not cool around large magnets. After all, the doctors use a magnet to set my pacemaker; it stands to reason that another magnet could scramble it! So I pull out my plastic card and tell the TSA agents that I have a pacemaker and request a hand patdown, and just avoid all that.

But what about the new scanners? Friend or foe? Not knowing, I called my pacer lab. The short answer: We don’t know.

The longer answer: There hasn’t been any testing done on pacemakers yet. It’s not really safe to get a human volunteer to test the scanner (“We don’t think anything well happen, Fred, but just in case… sign this release form.”) so the next best plan is a series of tests, usually involving calibrating a pacemaker, taping it to a mannequin, and sending him through a scanner – simulating what would happen to a traveler who happens to have a pacemaker.

If the pacer checks out, you run the test again, and again, and again, to see if going through the scanner multiple times will affect the pacer. Then you run the test yet again – with longer scans and higher radiation levels, to see if that affects the pacemaker. And you keep repeating these tests to eliminate the possibility of a fluke reading.

Wow, that’s pretty involved. It would probably be better if we could borrow a scanner for a few weeks, but I doubt that is going to happen. TSA like to keep things close to the vest, and I bet that goes double for their newest secuity tool. So I figure that the best thing to do if you have a pacemaker is not to risk it – just keep asking for a hand search.

Thankfully, my home airport is so small that they only have three gates. It will be quite a while before they get a Backscatter scanner!

Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

Dabigatran approved!

October 21, 2010

For the first time in nearly 50 years, patients with Atrial Fibrillation (A-Fib) have a new blood thinning option: Dabigatran. The talk is already starting about how this could replace Warfarin (which is really RAT POISON… we’re just given it in doses too small to kill us!)

One can hope, but there is still a lot that we need to learn about the drug. The US Food and Drug Administration has approved it only as a preventive for stroke caused by A-Fib. Will it even work for anything else? The odds are that it will, but it still needs to be tested. How are people with mechanical valves going to react to it? Somebody’s going to have to take a deep breath and test it. Yet another problem is the cost. Dabigatran is estimated to cost $8 to $12 per day; Warfarin has been around so long that the cost is a pittance. But that is just the cost of the drug – with Warfarin, you also get the required monitoring, in the form of the INR Test. Dabigatran doesn’t require monitoring. Does the cost of Warfarin plus the cost of the test plus supplies make its cost roughly equal with Dabigatran?

There’s another major drawback for certain CHDers: Dabigtran is currently not recommended for “patients with the presence of a severe heart-valve disorder.” That sounds like Tricuspid Atresia patients, Hypoplastic Left Heart Syndrome patients, and those with several other defects are out of luck. Perhaps it is not for us because of lack of testing; if that is the case, the recommendation may change in the future.

At the moment, Dabigatran looks like a drug with a limited potential. Hopefully real world experience will change this.

CHD and Childbirth

October 12, 2010

“…sometimes, important things get ignored or don’t get said.” – Judge Tolliver, The Jack Bull (1999)

Can a woman with a heart defect bear a child?

The answer is… perhaps. The question varies from woman to woman. Having a defect does increase the chances of having a child with a heart defect, and I am sure that is a “gift” that no parent wants to pass on. Perhaps the better question is should a woman with a Heart Defect attempt to get pregnant?

I can’t answer this question… you need to discuss this with your Cardiologist. Sometimes a defective heart can’t take the stress of nine months of pregnancy. Other times, with the help of a OBGYN trained in high risk pregnancies, the mother can have a child. And there are women who have a CHD who won’t need any extra precautions at all. As I have said before, every heart defect is a little different, and affects the owner differently. A friend of mine should not, under any circumstances, get pregnant… but she and her husband are exploring other options. She’s on her way to becoming a momma, just taking a different path. I’ve met Heart Moms who are really Heart Moms – they’re the one with the defective heart. I’ve met young women who are supremely frustrated because their Cardiologist keeps telling them it would be a bad idea, and I have met childless women who seem to be at peace with their situations.

Any CHDer, but especially a woman thinking of having a child, needs to think it through completely and discuss it with your doctor. Your Primary Care Doctor needs to be consulted, but you really need to consider the opinion of your Cardiologist.  A recent study conducted in Germany showed that nearly half of the women with a Heart Defect had not received any counsel about pregnancy or contraception. And nearly 20% were taking birth control that was contraindicated for them. (In other words, they had a health problem that was listed in the “Do not take this drug if you suffer from…” section.)

The bottom line is that all CHDers – male and female – are best served by looking after themselves. Our health challenges are so specialized that “sometimes the important things don’t get said.” It’s your health, your body, and you have to look out for yourself. The only exception is when you are young; then it’s your parents job to ask the questions. And teach you how to do the same when you grow up.

From Death, Life

October 5, 2010

Greater love hath no man than this, that a man lay down his life for his friends. – The Gospel of John; Chapter 15, Verse 13

I hate that he’s gone, and I hate everything about the CHD that took this perfect child from us. Nothing can replace him, and nothing will help us “get over” this. It is too much. – Comment left last night by Ewan’s mom.

Lord, yes. Nothing can replace him, and nothing should. This was a life cut much too short. It’s been a rough week in the Congenital Heart Defect (CHD) family, as at least six CHDers of all ages have passed. Always the optimist, my hope is that someone, somewhere learned something new from one these cases. And perhaps they can couple that new knowledge with what they already know and find the key that unlocks the mystery.

Older CHDers can help, too. Something has kept us going much longer than anyone predicted…what? When I shuffle off this mortal coil I plan to leave my heart to medical research. Let them poke and prod as much as they want, I won’t mind. And perhaps someone can figure out why some of us are only granted an hour upon the stage and then are heard from no more, while others seem to be here tomorrow, and tomorrow, and tomorrow.

There is a reason why that happens… what is it? We haven’t found it yet. But I live in the hope that if something – anything – is gleaned from such a sad event it will be knowledge. Even if all that is learned is what not to do, that helps bring us one step closer.

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!

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%!

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!

So you’re saying I don’t count?

September 8, 2010

I was taking a survey over the weekend – no, not one of those answer three questions and win a free iPad! surveys – but a survey from a major national polling company. You’ll see them on the evening news occasionally.  Everything was going smoothly until I got to this question:

Do you have any of the following health concerns? (Please check all that apply)

Diabetes

Multiple Sclerosis

High Blood Pressure

High Cholesterol

Fibromyalgia

Arthritis

Epilepsy

Autism

ADHD

Tourette Syndrome

Asthma

Cystic Fibrosis

Leukemia

Parkinson’s disease

Gingivitis

Growth Hormone Deficiency

Scoliosis

Muscular Dystrophy

ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease

Erectile Dysfunction

Infertility

Insomnia

Narcolepsy

Noise Induced Deafness

Hearing Impaired

Schizophrenia

Bipolar Disorder

Depression

Irritable Bowel Syndrome

Lactose Intolerant

Other (Specify:)

None

Refuse to Answer

So naturally, I check OTHER and type in Congenital Heart Defect. The survey form is not impressed:

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

So I try again, with Congenital Heart Disease.

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

Uh-huh… Mr. Computer, I’d love to change my answer, but that is just not possible!

Try again: Tricuspid Atresia

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

What was probably happening was that question was a “branch question”… the survey form is programmed to ask additional questions based on your answer. But it was disheartening to find that the database didn’t even recognize America’s leading birth defect. Shoot, most of the Acquired Heart Diseases are left out, too. The only thing that qualifies is high blood pressure. (That’s a good hint that this is a branch question – answer high blood pressure and the next question probably will be about the medications you are taking for it.)

In the end, I chose refused to answer since I do have a pretty serious health concern but it is not on their list. The next to the last question was Can you think of any way we can improve this survey?

Why yes, now that you’ve asked…..!