December 13, 2009: SurgeXperiences, the Blog Carnival of Surgery, hosted at Adventures of a Funky Heart! The current edition of SurgeXperiences is HERE.
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)
Every now and again I will mention this book, because I think it is so useful and important. I own a copy, but I am not affiliated with the publisher. I’m not earning anything if you choose to purchase this book.
A book that I highly recommend for any heart family is The Illustrated Field Guide to Congenital Heart Disease and Repair. This book is a great guide to Congenital Heart Defects – the book lists 35 seperate defects – and the operations used to correct them. There are also chapters on Echocardiograms, Electrophysiology, common cardiac drugs, and catherizations.
There is a little bit of Doctor-Talk in the text – an experienced patient or heart parent won’t have any difficulty with the terminology, but someone entering the CHD world for the first time may have a little bit of trouble understanding it. This really isn’t a problem, since there are many diagrams – you can see what you may not be able to read!
There are two versions: The pocket sized version is 4 inches by 7.5 inches, small enough to slip into a purse. It’s a little big for your pocket, but a man could carry it between their belt and the small of their back. A wire binding allows the book to lay flat on a table.
The larger version (7 inches by 10.5 inches) has a little bit different content that the smaller version. The Large format contains a section of “abandoned” heart surgeries – the Classic Glenn Shunt and the Waterston Shunt are two examples. Other than that, the two books have the same content.It also has a wire binding.
You can purchase the Guide here. Both versions are available, but do not let the need for a purchase order scare you (or the $200 minimum order for a purchase order, either!) This company sells a lot of items to doctors offices and hospitals, situations where a purchase order is needed. But they also sell retail, and have no problem sending you one copy of anything. Apparently they recognize the fact that there are a lot of non medical people who need information about Heart Defects. (Good for them!)
They also sell The Illustrated Guide to Adult Congenital Heart Disease. A friend tells me this book is very informative, but I have never seen a copy, so I can’t recommend it.
But I have used the CHD Guide, and I highly recommend that book!
On of the hardest parts of recovery from heart surgery is the time it take for the sternum (breastbone) to heal. A sneeze feels like a hammer blow to the chest, and even the littlest things are painful – you just don’t believe how many activities involve your chest muscles and breastbone in some way.
I always seemed to be dropping things – the law of gravity is still being enforced, so I would have to bend down and pick up whatever I had dropped. That HURT! I even started keeping my back straight and squatting down (the proper way to pick up a large object without hurting your back) but that didn’t seem to help very much at all. Grabbing an item from the floor still hurt, just not quite as bad. So I got pretty good at grabbing small objects – pencils, forks, etc. – between my toes and lifting it with my foot! Not the most sanitary trick ever invented, but once I got it off the floor I could wash it off. Actually getting down to the object was difficult, so I used that little foot-grab a lot!
There’s a new surgical technique being used in Calgary that can really reduce the pain and recovery time of heart surgery: gluing the breastbone back together. instead of staples and wire, these surgeons are using a new adhesive that is compatible with the human body to seal the breastbone. Patients are reporting less pain and shorter recovery times.
Glues used in wound recovery aren’t new, but it is the first time that this type of wound closure has been tried. Although the number of cases is low (about 20 patients so far) a larger research study using the patented adhesive has just kicked off. With luck the glue will soon be a standard part of surgical recovery!
“I’ll be back.” – The Terminator (1984)
I thought that we had already fought this battle – CHDers have been to Washington DC to lobby for the Congenital Heart Futures Act earlier this year, 250 of us. And in early March our efforts were rewarded by introduction of the Act into BOTH the Senate and the House on March 18, 2009. The Act was given an identifing number for both versions (The Senate version is known as S. 621 and the House bill is marked H.R. 1570.) We’ve even got some good sponsorship, the most prominent being Senator Richard Durbin, the Democrat from Illinois.
So I thought we had fought this battle.
“Just when I thought I was out, they pull me back in!” – The Godfather Part III (1990)
Looks like I was wrong – the Congenital Heart Futures Act is stuck in Committee. It has happened to a lot of bills; National Healthcare Reform has dominated this session of Congress and it seems that everything else has to wait its turn.
So we’re going back to DC, to lobby for the Congenital Heart Futures Act again. And hopefully this time we can get it moving. Lobby Day 2010 is set for April 22, and I’m hopeful that you will make plans to join us in DC.
We need every voice to speak out – not only for the current generation of Congenital Heart Defect Survivors, but for the generations yet to come. And if you can’t come yourself, please consider writing a letter of support for the Act. Every little bit helps!
The Funky Heart plans to be there, once again liveblogging the event and keeping you informed of what’s going on. You can’t just say that you are working against CHDs, you have to get in the fight, put your feet on the ground and be willing to do the grunt work.
We’ll be right there in the middle of it!
“I’m on my way!” – Dick Tracy (1990)
I just don’t “get” the Fontan. At all.
I was recently asked by a CHD organization to write an article about the Fontan Procedure for their newsletter. I had to turn them down; I had to say that no matter how many diagrams I studied, and how many textbooks I have read, I just don’t see how that operation works. Thankfully there are people who are a lot smarter than I am who know how to explain it, and a few of them understand how to surgically alter a defective heart to make the Fontan work. Thank goodness for that, because if they didn’t, there would be a lot fewer of us around.
I was scheduled for a Fontan in 1988; that surgery went completely wrong and they barely got me off the table. I never got the Fontan, but many others from that time period have needed a Fontan Revision or Fontan Conversion. (After clicking the link, pay close attention to Section V.)
One of the difficulties in understanding lies in the fact that the Fontan has several variations, and is almost “customized” for the patient. Now there is a new computer simulation available to test various versions of the Fontan on a defective heart. The simulation will help determine blood flow patterns to help surgeons choose which variation of the Fontan works best for that patient.
The two researchers who developed the computer simulation have also designed a Y-shaped graft to be used as part of the Fontan. The Y connected will be used to join the Inferior Vena Cava (The major blood vessel leading to the heart from the lower part of the body) to both branches of the Pulmonary Artery, not just the single connection that is used now. According to the Abstract, the Y graft “is expected to be put into clinical use within a few months.” I am not sure if that means it is ready for clinical trials or has passed the trials and is ready for real world use.
Either way, these developments look promising!
There is a growing movement in the Congenital Heart Defect (CHD) family pushing for the inclusion of testing newborns with a Pulse Oximeter before being released from the hospital. Such a test would provide a fast, inexpensive way to determine if a CHD is present; if the situation warrants, further tests can be conducted.
Back in July I wrote a blog post about an article that appeared in the medical journals Circulation and Pediatrics that stated that Pulse Oximetery should not be supported as a routine test for newborns.
Many readers have misinterpreted that post, the Circulation/Pediatrics articles do not say that the PulseOx test should be discarded, but that more research is needed. (Very few readers click the links in each post, I do not know why. That’s where a lot of extra information about the subject can be found. And sometimes I just might surprise you!)
Seriously, let’s visit the subject of the PulseOx again for a few moments. It’s a pretty good idea – a quick reading of the child’s blood oxygenation level can be determined by a Pulse Oximeter (sometimes called a PulseOx). The test is quick (ten seconds at the most), painless, and inexpensive. Any blood oxygenation level reading below 90% usually triggers a follow-up test: usually an Echocardiogram or an ECG.
While the medical journal article cites its own reason why there needs to be more research into the use of PulseOx, I can see one major flaw they did not mention: A PulseOx test can only detect a Cyanotic Heart Defect. And only about 25% of all heart defects cause Cyanosis.
So what we need, in my opinion, is overlapping tests: PulseOx combined with an Echocardiogram AND an ECG. And perhaps add a Fetal Echocardiogram for mothers who are in high risk groups.
But when you do all that, the CHD test for newborns is no longer fast, and certainly not inexpensive.
And the bad news is that even with overlapping tests, a few CHDs will still slip through. On May 4 of this year I blogged about Nick Heine, the police officer who died of an undiagnosed Congenital Heart Defect while answering a call. Nick had a problem in his heart’s electrical conduction system, and certainly he had undergone a complete physical exam before becoming a police officer. He probably had to have physicals all during his career, but that heart defect never showed itself until the instant it killed him.
So this is where research comes in. Keep looking at the results of the PulseOx; the more we know, the better we can make the test. Research will also make other medical procedures – of all types – better, faster, and less expensive. So perhaps one day there will be one single test, cheap, fast, and reliable, to determine if a child has a Heart Defect.
And until then, we work with what we have – PulseOx.
I’ve spoken to two other Congenital Heart Defect (CHD) survivors over the past couple of days, and both of them have commented that I am easy to talk to. Not because I have the gift of gab, I’m certain, but I’m easy to talk to because all three of us share the same problems. Not the same CHD, but the same experiences. “I can tell you that I’m having a bad day and you know what I mean,” one of my friends said. “If I tell someone else I have to explain it.”
Perhaps that is the reason that so many of us in the CHD community are so close – shared experiences. Exactly how do you describe the effects of a heart defect? When I was a part of the Adult Congenital Heart Association’s (ACHA) group that appeared before the Social Security Administration last year, we gave the Commissioners a folder of letters from ACHA members and Adult Congenital Cardiologists. Glancing through the folder, I read a great description of the effects of a Cyanotic Heart Defect:
Hold your breath while you run around your house twice.
If you are Heart Healthy, you may try doing that as an experiment, and feel winded and a bit lightheaded for a few moments. You may even feel as if you may pass out if you don’t sit down. But you’ll get your breath and your color back, and soon you won’t even feel tired. But when you have severe Cyanosis, you feel that way all the time.
If you haven’t been there, it’s hard to imagine.
It has been a busy day, and promises to be busy tomorrow. So busy that I just sat down at the computer, a half hour before midnight, and I have no idea what I want to write about.
Nights like this make me crazy!
This guy might have been having one of those crazy days himself, he sat down and built a heart made of LEGO bricks!
I’ll write more later, and it will be better – I promise!
Florida Eliza coded last night, but they were able to get her back. She hanging on, and its becoming more and more obvious that this young lady needs her transplant to occur pretty soon.
“I can’t pray for a transplant, ” you may be thinking. “Because that means that I’m praying for someone to die!” Not true – go pick up today’s edition of the local newspaper. You’ll see a long list of the people who have recently passed away, so you aren’t “praying for someone to die” – that’s normal. It’s the final chapter in this amazing adventure of life. And hopefully, more than a handful are organ donors, and someone will have a nice heart and a strong lung that matches Florida Eliza.
Do you do your part to take care of the planet? Do you sort your trash out so that it can be recycled? Why not become an organ donor and recycle yourself? You can leave any or all of your useful organs, along with tissue samples – you’ll live forever, and save someone’s life in the process. Someone like Florida Eliza, perhaps.
Last week, I emailed Eliza and told her I was going to be at the CHD Forum in Tallahassee on February 13, and I was hopeful that she would be able to be there. She can’t do it on her own – so I’m asking you to give her all the good thoughts and best wishes that you can muster.
When I (or anyone else) speaks of the number of Congenital Heart Defect (CHD) cases in the United States, where do we get our numbers? And how do we know they are accurate?
An accurate estimate relies on two factors: Reliable numbers and good math. I usually start with the estimate provided by the American Heart Association. That number has changed recently: They now report that out of every 1000 births, 9 will have some form of Congenital Heart Disease. We can confirm that number by looking at data from other Heart Health organizations; in this case, most of the other prominent organizations – including the March of Dimes – contend that the correct number is 8 in 1000. So for the moment, we’ll stick with 8 in 1000, which is the number I have been using.
Which brings us to our first question: Why does the American Heart Association feel that the number is higher? Are there more heart defects occurring? Or are doctors getting better at detecting them? That’s a question I don’t have an answer for – and something to investigate later.
So if we accept that 8 children in 1000 are born with a CHD, how many is that per year? Now we need good math – The United States Bureau of the Census reports that on average, there is 1 birth every 7 seconds in the United States. Since we know there are 86,400 seconds in a day, there must be 12,343 people born every day. 12342.857 people to be exact, but since you can’t have 0.857 of a person, you round up all fractions.
8 out of every 1000 births can be converted to a decimal number: 0.008. Total number of births divided by the occurrence of heart defects (12,343 multiplied by 0.008) means there are an average of 99 people born every day with a heart defect. (98.744, to be exact)
Remember, we’re still assuming that 8 out of every 1000 births has a heart defect. Let’s assume for the moment that the American Heart Association is correct and say that 9 out of every 1000 live births has a CHD.
That doesn’t change the birth rate (1 every 7 seconds) or the number of seconds in a day (86,400), so we can still use those original numbers. The number of people born every day won’t change, it is still 12,343, and 9 in 1000 converts to 0.009, obviously. 12,343 multiplied by 0.009 equals 112 people per day. (111.087)
99 people vs. 112 people. The difference 1 person per 1000 can make is astounding.
So blow, blow Seminole wind,
Blow like you’re never gonna blow again.
Take me down to the Big Bend
To meet some new Heart Friends.
That’s where I’m headed – I’m going to be a part of Broken Hearts of the Big Bend’s Regional Forum on Congenital Heart Defects! It is going to be held in Tallahassee, Florida, on February 13, 2010. The event begins at 8:30 AM at Sittig Hall in downtown Tallahassee. You can get more information and register for the Forum by clicking HERE.
Two of the top Pediatric Cardiologists will be in attendance – Dr. Mark Bleiweis, the director of the UF Congenital Heart Center and chief pediatric Congenital Surgeon; and Dr. Jay Fricker, who is the head of Pediatric Cardiology for the University of Florida College of Medicine. I’ll have my laptop and hope to be liveblogging the forum; but if that isn’t possible I’l have a notebook and pencil and blog about the event later. (I hope there is Wi-Fi, it’s much better when it is live and in color!) Dr. Fricker and Dr. Bleiweis will participate in a panel discussion, and later on experts will show us how to advocate for your child at school, in the doctor’s office, and in the hospital. I’ll be on a panel of Adult CHD Survivors scheduled for after lunch, and possibly even speaking to the group.
The event is FREE but they do ask that you register, probably so they will have a good count for the Happy Hearts Reunion, a gathering of CHDers that will follow the event. You can register by clicking the link on the information page.
It promises to be both fun and informative, and you’ll get to meet other heart families who are fighting the same battle that you are.
Hope to see you there!
