Archive for the ‘Facebook’ Category

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

The PulseOx test – not perfect, but good

September 21, 2010

If you have been reading Facebook or Twitter this past weekend, you’ve probably seen the news: The Health and Human Services’  Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) voted to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel.

According to what I have read, the Health and Human Services Secretary now has 180 days in which to consider the recommendation and decide to either accept it or reject it. Historically the Secretary acts fairly quickly and usually accepts the recommendations given by her advisors, so the major hurdle could well have been cleared. It could only be a matter of time before the Pulse Oximetry becomes standard practice.

No PulseOx testing protocol exists yet. The official recommendation by the Health Resources and Services Administration addresses this issue, by stating “The Health Resources and Services Administration shall guide the development of screening standards…

This will delay the process – with no testing protocol, the recommendation can’t be accepted on a Tuesday and the program begin at 12:01 AM Wednesday. For the results to mean anything, a medical test must be administered in the exact same manner each and every time it is given. For example, I need to have some blood drawn this week. The nurse will apply a tourniquet to my arm, inset a needle into a vein in the crook of my elbow, and draw three vials of blood. Everyone else, no matter where they are, who has those tests done will go through the same process. Protocols are an essential part of medical testing. As this 2008 report notes, “Nursing staff received in-service training in the screening protocol and performed the pulse-oximetry procedure.”

In this study the type of  Oximeter is specified (under the heading “Methods”). This is also an important part of the protocol – perhaps not the exact same type of testing equipment, but a standard that must be met, and probably an agreed on calibration procedure. If you step on and off a manual scale enough times, the pointer will no longer return to zero… and your weight will be inaccurate until the scale is “zeroed out.” A pound or two won’t make much difference, but a point or two difference on a PulseOx reading could mean alarmed parents and unneccessary testing. A proper testing protocol would even specify a testing location, as studies have shown slightly lower PulseOx readings when the test is performed on the foot. Fussy or crying babies also produced lower saturation numbers.

Despite what you may have heard, the PulseOx test isn’t that accurate when performed on heart defects that do not cause Cyanosis. Cyanosis (medical term: Hypoxemia) comes from the root word Cyan, meaning “blue,” and is caused by low levels of oxygen in the blood. Cyanosis can be hard to detect, as the oxygen level has to drop below 90% before it begins to appear. Cyanosis will cause the lips, fingers, and toes to have a blueish tinge. (SEE THIS ILLUSTRATION) Non-Cyanotic (also known as “acyanotic”) Heart Defects account for 70% of all defects. When these defects are present, blood oxygenation (and therefore the PulseOx reading) is usually normal. In fact, the recommendation is only meant for CCCHDs, or Critical (sometimes the word Complex is used) Cyanotic Congenital Heart Defects.

While the Pulse Oximetry screening test is not the complete answer for detecting Congenital Heart Defects; it is certainly part of the answer – another piece of the puzzle; another arrow in our quiver. My idea – and I don’t know if it is just a pipe dream, or a discovery we haven’t made yet – is to find a “bulletproof” test that indicates the presence of a heart defect. Does a defective heart release a gene, an enzyme, or any kind of biomarker into the bloodstream?   If we could find that marker and learn how to detect it… Gotcha!

But until that day comes – if it ever comes – you throw everything but the kitchen sink into the fight.

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!