Archive for the ‘Medical Records’ Category

REACH for the goal!

August 12, 2010

Great news: The Adult Congenital Heart Association (ACHA) announced today that the Research Empowerment in Adult Congenital Heart Disease (REACH)  initiative would receive a one million dollar federal grant! The money will be used to activate CONGENERATE – The Congenital Evaluation, Reporting, and Tracking Endeavor. CONGENRATE is an Electronic Health Record (EHR) designed for Adult Congenital Heart Defect Survivors!

REACH is a joint project between the ACHA and the Alliance for Adult Research in Congenital Cardiology. The two groups are already working together on HEART-ACHD, a two-year study of why adult CHDers “fall through the cracks” and  get away from good Cardiological care. And we aren’t in this alone: CONGENERATE will be tested at Oregon Health Sciences University, Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Boston/Brigham and Women’s Hospital, and Children’s Hospital of Wisconsin.

Whenever I travel, I take a large folder with me that contains basic health information, my diagnosis, the names of my doctors (Including my team of Cardiologists in Atlanta and that I would rather they be the first doctors contacted) EKGs, and a diagram of my heart. It comes in handy – it was with me when I went to the Emergency Room in Houston, and I have a smaller version in my back pocket when I leave the house.

If CONGENERATE had began five years ago, I wouldn’t need my folder. I’d have an ID card or an access number that could have been entered into a computer and everything you need to know about me would appear on a computer screen! CONGENERATE should be ready to roll out sometime in 2012…. and if it is a success, perhaps the next project would be a similar application for Cardiac Kids!

ACHA’s vision for every CHDer is “a life unlimited by congenital heart disease.”  Projects like CONGENERATE are small baby steps in that direction.

Did you cause your child’s Heart Defect?

April 9, 2010

There has been some recent news coverage that contends that you just might have, if you were obese when you became pregnant.  But just in case you need to be reminded, News organizations make money by selling their product. There are lots of ways to do this, but two of them are really effective: 1) Make something so appealing that you just have to know more; and 2) Scare you so bad that you tune in/buy a copy to learn how to protect yourself.

How many Heart Moms look at their child in an ICU unit and ask themselves “What if…?” I’d wager that the answer to that question is all of them.

So you need to take health news on TV and in magazines with a grain of salt. A big grain of salt, really. The first thing I would recommend is that you drop by Gary Schwitzer’s Health News Review Blog. Gary has been in the Health Reporting field for 30 years, and he’ll tell you if the latest news report is wrong, and how it is wrong. This is a great resource to check out all those “We’re doomed!” news stories for yourself. Gary can teach you how to look at those news stories with a critical eye and not be scared to death.

Don’t take everything you read or hear at face value; if possible, try to find the original research. Read the information for yourself; then make an informed decision.

Did you cause your child’s Heart Defect? No one can tell you for sure. The new report that is stirring so much concern says that there is a better chance of having a child with a Heart Defect, but obviously it is not a certainty.

The heart begins as a straight tube, much like a drinking straw. As the heart develops it actually starts to beat in this configuration! Later, it will twist and fold over onto itself, forming a loop that will begin to grow together and form the organ that we are all familiar with.

All this happens before you even think that you might be pregnant. By the time you see the doctor to confirm it, the heart has formed. If you are destined to be a Heart Mom, it has already been decided.

Now this doesn’t mean that you can ignore all of your doctor’s advice! But think about it – millions of women have been like my mom – she did everything right, tried to follow their  doctor’s instructions to the letter, and still  I was born with a Heart Defect. Other women had every vice known to man, and their children were born healthy. So what causes Heart Defects?

I think that the main cause is a combination of genetics and environment. Research funded by the March of Dimes has found several genes that interact to help the heart form. Of special interest is the GATA4 gene – something it does helps the heart split into the left and right sides and form the Septum.  Figure out what is happening there, and maybe you can stop ASDs and VSDs!

The National Heart Lung and Blood Institute (NHLBI) has also determined that genetics play a part in the development of Hypoplastic Left Heart Syndrome (HLHS). A study of the family medical history of HLHS patients found that their ancestors also had a specific heart problem: a Bicuspid Aortic Valve. So apparently there is a genetic cause for HLHS – now the challenge is to find it.

Environment also contributes to heart defects. A section of Baltimore, Maryland contains a “cluster” where the incidence of HLHS is twice as high as the national average. What is going on there? What makes that area so different that it could trigger a Heart Defect?

Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Wisconsin isn’t taking this lying down – they’ve created the Wisconsin Pediatric Cardiac Registry and are studying the data that it has generated, looking for clusters and what might be in the area that could create a Heart Defect hot spot.

What is the interaction between genetic factors and environment? What happens that triggers the formation of a heart defect? No one is certain, and the scary answer is that different factors contribute to different heart defects.  But if one day we could answer those questions, then maybe we could slam the door on Congenital Heart Defects.

Because every heart deserves to live a lifetime.

What’s your guess?

March 29, 2010

From Dr. Wes:

“We’ve got a 40-year-old male with a pacemaker and a strange X-Ray down in Radiology. One of the interns said`Whoa!’ when he saw this but I don’t think that’s his official diagnosis. What do you make of it?”

(Hold your arrow pointer over the X-Ray for the answer.)

UPDATE: Radcliffe Hospital Investigation

March 6, 2010

The inquiry into Oxford’s John Radcliffe Hospital continued today, as the British Press found a “suspect” and news came that the investigation is a lot bigger than initially thought.

All four of the children who died had Congenital Heart Defects and all were operated on by the same surgeon, Mr. Caner Salih. (British surgeons are traditionally referred to as “Mister”). Not only was Salih the doctor in all four cases, he has since left the hospital… so obviously, he must be the guilty party.

No so fast – early reports indicate that Salih may have been the person who sounded the alarm and that all aspects of patient care will be examined, not just the surgeons.

Radcliffe has a history of difficulties in cardiac surgery, dating back to the year 2000. Internal problems and surgeons failing to work together were highlighted as the main cause of the difficulties then.

The hospital also performs a low number of procedures (Estimated to normally be “between 30 and 40” in a four-month period, which would be approximately 100 per year.) The National Specialist Commissioning Group is expected to report in July that the proper thing to do is consolidate eleven Cardiac Surgery Centers down to five or six – Centres of Expertise that should have a minimum of four surgeons who perform 400 operations per year in each Center.

That’s the proper thing to do – the only way to get really good at something is to continually practice doing it. The problem at Radcliffe Hospital may prove not to lie with the surgeon, but rather with the entire Cardiac Care Unit.

Get the notes!

August 4, 2009

My main task yesterday was to get my information together and fax the Medical Records department at Johns Hopkins. I don’t know what happened to them or where they went, but I have misplaced some of the photocopies of my records that I had gotten from them.

It was rather surprising that I actually got them. I emailed them and asked if records from February of 1967 were still available.  Surprisingly, they said they would look for them! And now I have managed to misplace them! Ain’t life grand?

You really ought to have a copy of your medical records handy, just in case. The more complex of an illness you have, the more useful they will be. I have multiple copies – an 8×10 folder (Which I take with me when I travel and leave somewhere in my room that it will be easily seen), a 3×5 folder in my back pocket, and a copy stored on a USB stick clipped to my belt. If I get taken into an Emergency Department unable to speak, I ‘ve got what I need.

And you have to look through everything and decide what’s important and what is not. I edit mercilessly – that unexplained fever I had in the 5th grade probably isn’t a concern any more, so that report stays at home. This is what I have in my heath folder: my vital statistics, insurance information, who to contact, allergies, information about my defect, corrective surgeries, diagram of my heart, and the last EKG I had. The basic stuff.

What you can also have that is invaluable is your surgical report. Whenever an operation is performed, a careful record is kept of the procedure. Here’s an example: Alfred Blalock’s surgical report of the first Blalock-Taussig shunt. (Page 1; Page 2) Having them is almost like letting that doctor travel back in time and see the original operation – he might have to call for a surgical consult to help him interpret them, but he’ll know exactly what was done during your operation.

Getting your surgical records might be difficult. The older you are, the better the chance they have been stored, filed and lost, and perhaps even disposed of. If you are the parent of a young child, be sure to ask for the surgical notes. The doctor may say, “Sure, no problem!”, or he may have to ask you to sign a form to show that they were transferred legally. You might have to jump through the hoops that the HIPPA law places in your way, but if they can be obtained, get them. Hopefully you’ll never need them, but if you do, they could save your life!