CHD Blog Carnival Deadline: November 25! Subject: “How a heart defect affects my life.”
Red and Blue Day: Show your support of Congenital Heart Defect Survivors by wearing red and blue on Sunday, November 29.
Support ACHA through laughter! Gotham Comedy Club, New York City
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)
Here’s a medical discovery made by cancer researchers that can benefit Funky Hearts, too. Researchers at Uppsala University in Sweden have recently discovered a protein that controls the growth of new blood vessels. These researchers want to limit blood vessel growth in cancer patients, at least temporarily: if a tumor connects to a blood vessel, it then has access to all the resources it needs to grow. It’s almost like throwing gasoline on a fire.
But for someone with a Congenital Heart Defect it could be useful to encourage blood vessel growth. Everyone is born with a set of Collateral Blood Vessels – these are tiny “extra” blood vessels that are the body’s backup blood delivery system. Normally, they never really have to do anything.
But if you suffer a heart attack (or are born with a Heart Defect) your collaterals can “wake up” and begin to pump blood to the affected heart muscle while avoiding regular blood vessels that are damaged or missing.
Now that we are learning how to slow down or stop blood vessel growth, perhaps we can figure out how to make certain blood vessels grow more. Wouldn’t it be really cool if a doctor could diagnose a heart defect and then take steps to counter it by injecting a localized drug right where it is needed?
The main stumbling block to this idea is the fact that even when they are active, the collaterals are still tiny blood vessels. We’d need a lot of them, and there is really no rhyme or reason in determining where they are located. They grow as needed. Right now we don’t have any visualization equipment that is sensitive enough to find all these extra blood vessels. And surgery of any kind in an area where the location of the blood vessels aren’t known would be pretty risky. There are a lot of obstacles to be overcome before this idea could ever be a reality.
But who knows what the future holds?
Update: My friend is out of surgery and doing well!
The three operation Norwood Procedure was developed in the 1980’s as an answer to Hypoplastic Left Heart Syndrome (HLHS). Since infant heart transplant was developed at about the same time, HLHS was 100% fatal before the invention of the Norwood.
But the results from those early Norwood Procedures varied wildly, especially in the early days when the Norwood consisted of only two surgeries. When the Sano Shunt – a direct Right Ventricle to Pulmonary Artery connection, using a “tube” made of Goretex – was introduced in early 2003, matters improved greatly. The Sano Shunt provided the heart with much more stability and increased survivability rates.
But while we know that the Sano works better, there hasn’t been much research into how much better it works…. until now.
The Pediatric Heart Network studied the cases of 555 infants with HLHS. Through random selection, roughly half of the infants received the Stage I Norwood with a Sano Shunt, the other half received the Stage I Norwood with a Modified Blalock-Taussig Shunt (MBTS).
Followup with the children showed that 26% of the Sano Shunt children required a heart transplant before the age of 1; 36% of the children with the MBTS version needed a transplant. But after two years, the number of children who needed a heart transplant was within four percentage points of each other. Good Pulmonary Artery growth helps in the success of Stage II and Stage III of the Norwood, and the MBTS seems to encourage Pulmonary Artery growth.
Meanwhile, the Sano Shunt had more complications that required a balloon or a stent to keep the shunt open. True, this is not as serious procedure as open heart surgery, but the fewer, the better. After all, minor surgery is any surgery that happens to someone I don’t know – when it is YOU, your child, or a family member, things quickly become very serious!
Overall, it seems that the Sano Shunt gives an HLHS patient better results over the first two years – after that, the odds even out. These children will have to be followed for years to determine the long term success rate of either the Sano Shunt or the Modified Blalock-Taussig.
Jenni Prokopy, writer of the Chronic Babe blog (and the Chronic-Babe-in-charge herself!) as selected a Funky Heart post for the 12th edition of Patients for a Moment!
Patients for a Moment is a blog carnival dedicated to the experience of the patient. Click on over to Chronic Babe and read some of the best writing by the people who fight their illness on a personal level. And if you are a young lady living strong in spite of a chronic illness, look around the Chronic Babe site. In addition to being a Funky Heart, you very well could be a Chronic Babe also!
And don’t forget that submissions are still being accepted for the CHD Blog Carnival. The deadline is November 25 and the subject is “How a Heart Defect affects my life.”
My friend (see the post “Won’t back down”) has arrived at the Mayo Clinic and her surgery is scheduled for November 18.
I’m sure she and her husband have had THE TALK.
Anytime you face any type of surgery you need to have The Talk. This is supposed to be pretty routine, the proverbial Walk in the Park, but there is always a chance that something just might not work out.
If you read Adventures of a Funky Heart! with any regularity, you know that I am very optimistic. My glass is usually half full. But still – this is heart surgery we’re talking about, and things could happen.
So every now and again – before a major procedure is a good time – you need to think about “What if…?” and make some decisions about should happen if the worst were to occur. No, you are not being fatalistic and you don’t have a bad attitude. You’re facing reality.
A smart patient will consider every outcome – good or bad - and plan for it.
With best wishes to my friend, and to you and yours;
Frank had a stroke, and then the doctors diagnosed him with Dilated Cardiomyopathy. That is not a Good Thing to have, as the heart muscle has become enlarged and weakened. Frank was in heart failure, and at the moment, he was not long for this world.
So doctors at the Texas Children’s Hospital placed Frank on the heart transplant list. And to help him survive until the transplant, they placed a Ventricular Assist Device (VAD) inside his body. The VAD will literally help his heart function until a donor heart can be found. But Frank is different – he’s the very first pediatric patient to receive a VAD and be able to leave the hospital!
In the bad old days before VADs (which wasn’t that long ago) it was a race – the time it took to find a suitable donor heart verses the time it took for the patients original heart to finally just give out. And it was a high stakes race, too: if the patient lost this race, they lost their life. And too many patients were losing.
But a VAD can help a weak heart keep going, and give it a chance to win the race.
Here’s a good post by The Happy Hospitalist about the mental checklist a doctor goes through whenever a patient is examined. In this case, however, the doctor misread an important sign and decided to send the child home. Happy describes what happened next:
Several hours later the child was complaining of a mild headache, was having a bout of diarrhea and was not interested in moving or eating or drinking. He was still wheezing and he was still having fevers… When I heard about how the child was acting, how his oxygen saturations left no wiggle room for safety, how he was complaining of a headache (which could be a sign of low oxygen levels), how he sounded lethargic, how he had a history of asthma and SVT, and how the H1N1 virus was disproportionately affecting the young in adverse ways, Mrs Happy and I recommended that she ignore her physician’s advice for watchful waiting and take her child in for an emergency assessment and emergency medical care.
This is a situation in which a parent excels – watch your child closely when he/she is sick. No one knows them better than you do; often you are the first person to detect that something just isn’t right. You may not have the medical education, and you may be following a gut feeling, but if that alarm bell starts going off in your head, act on it. Many a CHDer was first diagnosed by “Dr. Mom”… who may have had no idea what was going on, but they realized that something was wrong.
As the mother, you have to do what you think is right. That means if you think your child is in danger, you take them in for an emergency assessment and emergency medical care, regardless of what anyone else says, including the physician.
PalMD of the blog The White Coat Underground continues the theme as he discusses the best thing you can bring to the hospital with you: an advocate. Going in to the hospital doesn’t automatically make you an idiot, but it can be extremely difficult to keep your head in the game:
Even minor illnesses change the way we think, not just about mortality and finances, and other “big things”, but it changes our ability to think…Trying to parse through this complex information when in pain and stoned on Dilaudid is a challenge.
So plan to be out of it – and if you aren’t coherent, you need someone to look after you. Perhaps not 24/7 but as often as possible. A perfectly healthy friend of mine lost all the feeling in her right side and collapsed one Friday afternoon, and was rushed to the ER of a “Regional Hospital”. After some tests were run, the doctor came in, sat down, and announced that she has suffered a stroke… and that they would do an MRI first thing Monday morning to determine the damage and start treatment.
I was sitting on my couch 35 miles away; yet I clearly heard her husband scream “The hell you say!”
Take a friend to the hospital – or be a friend and go with someone you know.
As I have mentioned before, I worked at an agricultural museum for ten years. We were a small operation – so small, almost every task had to be shared. I’ve set up exhibits, taken down exhibits, repaired exhibits, run the Admissions Desk, worked in the Museum Store, led all of our educational programs, given tours, answered the phone, moved items from the front to the back (or from the back to the front) and even went on the daily lunch run – and that was on a slow day! There was a lot to do and not many of us to do it, so everyone had to help out.
Our museum is usually a self-guided tour, but a group could arrange for a guide to lead them through the exhibits, describing them in depth and giving facts that aren’t highlighted on the signage. One of the things I enjoyed the most was acting as a tour guide, because I got to use my storytelling abilities and interact with an audience.
Some see the tour as one long speech: First you say A, then you follow that with B; talk about C, and then move on to D. All in a straight line, start here, end there, and everything will be all right.
But that rarely worked for me. That technique is all based on memorization, and the tricky thing about memorization is that once you start, you really can’t stop. If you get off of the prepared script to answer a question, it is difficult to get back on track. And from that moment on, your timing is off and you are much more prone to error. If you ever run into a tour guide who does not like to answer questions or interact with the group, they are probably following a memorized script.
I was taught that a tour is not a long, unbreakable speech, but a series of stories. When we pause at the first exhibit, I tell you one short story – and because it is short, I’m able to interact with the audience and keep the narrative flowing. And then we move on to the second exhibit, where I tell you one short story… and so on and so on. It sounds difficult, but it really isn’t. Instead of thinking of something as one long event, break it down into smaller segments – the smaller, the better.
And that is how you need to approach the task of sharing your story with the world. Telling your entire life history will put an audience to sleep, so you need to hit the highlights. Determine what you consider to be the three or four major events in your life and tell one short story about each one.
People are natural storytellers; anyone can do it. Don’t believe me? Have you ever described a sporting event or a TV show to a friend who didn’t see it? Talked about your workday? You’re telling a story – develop that skill, and use it to raise Congenital Heart Defect awareness in your community.
One short story at a time.
Here’s a .pdf formatted article about how to read health news. A lot of information is out there; much more than when my parents were trying to learn all they could about their child’s defective heart. But with all this information, you also have to understand how the news media works: They’re like your easily panicked neighbor, the one who runs up to the fence and screams that the world is ending because he saw a mouse in the kitchen.
I had recently returned from Atlanta; but this wasn’t the “usual” trip to Atlanta to visit my Cardiologist. Two years earlier I had jokingly told a friend “If Atlanta gets to host the Olympic Games, I’m going!” They won the rights, and I started seriously thinking about what I had said. My friend and I sat down, made a plan, decided to split the cost and go.
We had been unable to book a hotel room, so we condensed everything into a one day trip. It was a whirlwind – our schedule was timed almost down to the minute – but we did it! We saw five different events, did some pin trading, and had a great time. That was Monday, July 22, 1996. Early in the morning of July 27 a bomb exploded in Centennial Park.
Someone called my grandmother.“They just blew up Atlanta! Everyone’s dead!” that person shouted, and hung up. Events would prove that “they” was one person (and no, it was not the security guard!) and “everyone” was a total of two people.
Two minutes later the phone was ringing at my house. “Your grandma is on the phone,” dad said, waking me from a deep sleep. “Get up and go talk to her, she thinks you’re in some kind of trouble.”
The news media is like that neighbor who called grandma, breathlessly spreading information that may or may not be true. In the words of Ronald Reagan, “Trust, but verify.” Read the story closely to see what’s being reported – or what is missing. The .pdf link above give you a good list of what to look for. Gary Schwitzer of the University of Minnesota runs Health News Review, a website that grades medical news on the accuracy of the reporting. It’s very informative – like a good police officer, he only trusts the evidence.
Remember, the phrase is “Take care of yourself.” You are your own best advocate, no matter if you have a heart defect or an ingrown toenail.
Here are two articles you need to see – one is from August, about literally “building” a tooth from stem cells, and one from just a few days ago about The Stanford University School of Medicine and the Gladstone Institute of Cardiovascular Disease working together to use stem cells to repair damaged heart muscle.
This is where cardiac research is going, though no one can predict how long it will take to get there. A lot of trials, most of them on animals, are being done to evaluate the usefulness of Stem Cells. Just the phrase stem cells generates controversy and starts a debate about the ethical use of Embryonic Stem Cells. Personally, I am opposed to the destruction of embryos to gather stem cells – but embryos are not the only source of embryonic stem cells. Cord blood, anyone?
And there may not be any need for controversy. It looks as if Adult Stem Cells work better, at least in heart muscle. But don’t go running to your doctor just yet, we’re still years away from this being useful.
And unfortunately there are still going to be cardiac surgeons and people with zippers for years to come: I doubt that we will ever totally eliminate the need for heart surgery, especially in CHDers. But through the use of artificial heart tissue (like the tissues that are being developed at Clemson University) and Stem Cells, I think Cardiac repair will be a lot different twenty years from now!
Golly darn gee whiz! We missed it!
The Funky Heart missed out on all the festivities associated with World Heart Day, which was September 27, 2009! What was I doing on September 27th? Ha’ mercy, I can’t remember… were we supposed to exchange gifts?
What’s that? Sorry folks, I hate to get you all excited, but CHDers aren’t really invited to World Heart Day. It’s for those other guys – Acquired Heart Disease and Stroke. Bummer!
But that’s OK. You can have World Heart Day. We’ll stake a claim to November 29th, the anniversary of the first Blalock-Taussig shunt (which predated your bypass operations, by the way) and we’ll celebrate then.
So when you talk about rebuilding your life after heart surgery, we’ll show you child after child who have been fighting Heart Defects from the moment they were born. We’ll introduce you to their parents, who are willing to ask one more question, go one more mile, and explore one more option in an effort to give their child the best chance to live.
We shall “strip our sleeve and show our scars” – a lot of us have more than one. And we’ll see to it that you meet some of our adults, people who may have fragile bodies but also have an iron will, who never give up and never give in.
We’re only a few, a band of brothers and sisters who fight a common enemy. And we count anyone who fights Heart Defects – Patient, Parent, Doctor, Nurse, Surgeon, Friend – as one of us.
We remember, with advantages, the battles that we have fought and the warriors who have fallen. Because our story is a story of perseverance, of hope, of determination, and courage.
And that is a story that a good man will teach his son.
