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.

It’s time for another CHD Blog Carnival! For those of you who may not know what a blog carnival is, it is like a magazine: different articles are provided by various writers, but all of them focus on the same idea or subject. The name come from the very first collection of like minded blogger links: it was hosted by a blog named “Carnival of the Vanities.”

If you are a CHD blogger, all you need to do is write a post on the chosen subject, and forward the link to me. I’ll put all the links together and present them as our work, and every writer will get credit and his/her blog mentioned. If you need an example of a blog carnival, click HERE for the carnival based on the patient’s experiences,  Patients for a Moment; click HERE for Grand Rounds, which is the best known medical blog carnival; or click HERE for the Nurse’s edition, Change of Shift.

Please note there has been a subject change: The subject of this edition of the CHD Blog Carnival is “How a heart defect affects my life”, so please make your contribution on that subject. When you are ready to submit, send the following information to me:

Your name

Your blog name

The URL of the post you are submitting

The title of the post you are submitting

Type CHD Carnival Submission in the heading line and that’s it!

Send it to Wildca   t3@gm   ail.com (spaced strangely to make the spammers scream; remove all spaces for the correct address)

The deadline is November 25, 2009, and the carnival will be published on November 30.

A 31 page .pdf report on the statistical relationship between motorcycle helmet laws and the availability of organs for donation.

Here’s the short version:

Q: What do you call a motorcycle rider who refuses to wear a helmet?

A: A future organ donor!

Well, it certainly seems that way! The people who run Medicare have this brilliant idea to save money: If you are admitted to the hospital with Congestive Heart Failure (CHF), Medicare will not pay if you are readmitted within 30 days.

How mind-numbingly stupid is that? But it gets even better: There is a plan to tax the manufacturers of medical devices. What’s a “medical device”? Oh, things like pacemakers, ICDs, electric wheelchairs…stuff like that. Congress doesn’t see these items medical innovations, they see them as a cash cow. They’re even planning to tax bedpans and tongue depressors.

Nothing in the health care bills address the real problem: The looming shortage of Primary Care Physicians (PCPs). We’re already running short, and an analysis of the plans estimate that PCP workload would increase 29% over the next 15 years… and you thought getting an appointment was difficult now.

Meanwhile, back at the hospital, Cardiologists are facing a cut in Medicare payments. (The actual numbers have just been published.) But before you start thinking we’re finally saving money, think again: The money is just being shifted around. Payments to specialists are being cut, but payments to PCPs are being increased – the pie isn’t any bigger or smaller, it’s just being sliced  differently. The idea is to increase payments to PCPs to help offset their medical school debts. Since Primary Care doctors don’t make as much as specialists, their debt is relatively higher. But the government has managed to mess this plan up, too: PCP payments won’t increase very much.

The PCP shortage is causing doctors to be swamped and patients to be frustrated. The wait times for an appointment are getting longer and longer and there are so many patients that the doctor has less and less time to spend with an individual patient. We’ve all had doctors who seem to walk into the room leaving! Often patients who want to see a doctor ASAP go to the Emergency Room – they are almost as crowded as your “regular” doctor’s office. The EMTALA law (Emergency Medical Treatment and Active Labor Act) says that a patient who presents at an Emergency Department with a medical problem or in labor must be treated, regardless of ability to pay. It was designed to stop patient dumping (and for the most part, it has) but abusers use it as a direct route to a doctor. Since there are no payment provisions in EMTALA, guess who pays the bill of a majority of EMTALA patients? Medicare… in other words, you.

One option that is becoming more popular for PCPs is Concierge Medicine, sometimes called Executive Medicine. Instead of payment per service, the patient pays a set “fee”, usually yearly, for the services of a Primary Care Physician. In return, the patient receives longer appointments, better service, and access to the doctor by phone or well beyond normal business hours. (Here’s an example) This is often scoffed at as “Care for the rich” but the idea is catching on. In fact, Concierge Medicine is growing despite the recession. Even a former White House physician has entered an Executive Practice. Doctors offering this service have smaller practices and only see patients who are part of their group, although you can usually “buy in” at your first appointment. Costs can run anywhere from a few thousand dollars yearly for access to a smaller practice and more time with the doctor during your visits; up to tens of thousands of dollars per year for special access, 24 hour consultations, telephone contact with your doctor 24/7, and a super-intense yearly physical. The yearly fee eliminates many potential patients, basically creating a private physician.

By committing the doctor to care only for patients who are willing to pay a set fee, practices can avoid the red tape of dealing with private insurance or Medicare. Some Executive Medicine practices no longer accept Medicare or insurance, cash or plastic are their only acceptable payment options. The national population of working physicians is already low; when an Executive Medicine group offers a doctor better working hours, a smaller patient load, and better pay, it will be hard to get him to leave it.

The current healthcare plans will solve very few problems but have the potential to create many more.

Ethan is our newest Cardiac Kid, he’s listed in our blogroll! I met his mom at the CHD Symposium at Duke Children’s Hospital this summer!

Ethan’s Aunt is making Red and Blue Ribbons to celebrate Red and Blue Day! Click this link to be taken to Ethan’s blog and find out how you can get one!

Old friend, here we are; after all the years and tears and all that we’ve been through… Bette Midler, Every Road Leads Back to You

Every person in this video is an adult living with a Congenital Heart Defect.

The Funky Heart has another friend! Meet Kylee, a Cardiac Kid fighting Downs Syndrome, Tetralogy of Fallot, and Atrioventricular Septal Defect (AVSD). Kylee’s mom is looking for Heart Moms and Heart Dads, so drop by her blog and say hi!

“How long has it been since you posted those cool videos?” a friend asked me. “You ought to post them again. When you showed them the first time there were about five people reading Funky Heart. You’ve got lots of new readers since then.”

She could be right… I can’t recall when I posted them. And trust me, if you’re having a bad day, this will cheer you up. And another video will follow on Friday!

Put on your headphones and turn the volume UP; here is Mark O’Shea and the staff of the Pediatric Cardiology department of Vanderbilt Children’s Hospital with the song, Look at You Now!.

Patients for a Moment is being hosted by Kairol Rosenthal over at Everything Changes, and  she’s chosen A Beautiful Heart as an entry! Thank you, Kairol!

Patients for a Moment is the premier Blog Carnival focused on one of the most overlooked facets of medicine: the patient. There’s some great reading from various Chronic Illness bloggers this month, so scoot over to Kairol’s blog and read! Just leave a trail of breadcrumbs so you can find your way back here!

I was able to get my H1N1 flu shot last Saturday! My State Health Department has a hotline for information on the H1N1 vaccine; since I am in a high priority group I called every few days to check on the availability. I think I got to be on a first name basis with most of their phone staff. But last Tuesday, instead of telling me the usual “Check back in a few days,” the operator asked if I would like to make an appointment to receive the vaccine! I took the earliest time available! Check your State Health Department’s website and see if they list an information line for the H1N1 vaccine and start calling!

Here’s a startling and sobering fact that you need to know: So far, 1 out of every 25 pregnant women who has contracted H1N1 has died. Take a breath, back up, and read that statement again. Read it until it has been hammered into your brain. Click the link and read the article that backs up that statement. Now, start making plans to get your H1N1 shot.

In regard the above statistic, exactly how deadly is H1N1? No one is sure. The standard measure of disease lethality is the Case Fatality Report, or CFR. Getting the CFR of H1N1 is simple math: Divide the number of people who died from H1N1 by the total number of people who contracted H1N1.

No matter what, the CFR is going to be wrong. There are going to be cases that go undiagnosed. Some people will wake up feeling miserable, realize they probably have the flu, and lock themselves away until it passes. Doctors make mistakes, and the rapid results test for H1N1 is only about 60% accurate. But the best that we can tell, H1N1 has a CFR of 0.5% for all reported cases. Regular Seasonal Flu CFR is usually about 0.1%. Both numbers are very small, but you can truthfully say that H1N1 is five times deadlier than the Seasonal Flu.

In other news, the United States has emptied its reserves of Children’s Tamiflu. Don’t worry, more is coming, and Adult Tamiflu can be “cut” to the correct dosage for children.  But that is one of those “Don’t try this at home!” activities, you don’t know what you are doing. Ask your local Pharmacist for guidance.

The Ukraine has banned public gatherings in an effort to control the spread of H1N1, since 67 people have died of “the flu”. This flu is not specifically identified but H1N1 is the most virulent illness out there right now. Ukrainian President Viktor Yushchenko addressed the nation about the flu situation – and placed all the blame for being unprepared squarely on his Prime Minister:

My request of May to the Prime Minister to allocate funds to establish a lab, to “arm” us in the situation, when the world is smitten by the epidemic of this flu, to date has not been answered.

Oh, boy.

There is also a looming crisis in Canada. The Providence of Alberta – in fact, all of Canada – was planning for a ho-hum, wait and see response by the public to the vaccine. Then three children died of H1N1 and there was a huge rush of people ready to be vaccinated. Still, things were under control until the manufacturer informed the Government of Alberta about vaccine shortages the day before the drug was needed. Clinics were suspended and a carefully crafted vaccination plan thrown into confusion. Nobody knows exactly what is going on and the opposition is calling for the Health Minister’s head. It’s becoming a political issue rather than a Public Health issue, and that’s dangerous. Meanwhile, a prominent Swedish politician has died from H1N1. North Korea claims not to have any cases of the Swine Flu. The South Korean government believes them – the average North Korean is undernourished and more susceptible to any kind of illness.  NK is probably taking drastic steps to make sure H1N1 can’t run free in their country.

Again, I have received my H1N1 vaccine, and I recommend you do the same.