Posts Tagged ‘Congenital Heart Disease’

Exhausted

October 9, 2010

By now you have heard or read of the unusually high number of Congenital Heart Defect (CHD) deaths during the past week. There have been at least six (some have stated that at least ten have passed, but I personally know of six. I’m not certain of the others.)

I’ve become e-mail friends with Joshua’s mom. Joshua was born August 16, 2010 and departed October 6. His mother was by his side practically the entire time, but what’s more, Joshua was never stable enough to travel. He never saw the world outside of the hospital.

52 days of hospitalization, two major heart operations…. the costs are going to be enormous. Joshua’s family is certainly physically exhausted, and before all is said and done they’re going to be fiscally exhausted.

When I was in the Intensive Care Unit after my first surgery in 1967, the cost was $66 per day. After I had a stroke in 2002, Intensive Care was $2200 per day. Note that in both cases the price quoted is basically a “rental fee”. It pays for the right to lay in the ICU bed for 24 hours. It does not include the cost of seeing a doctor, specialized nursing staff, drugs, or monitoring devices. I’ve stayed in hotels that cost $66 per night, but I have never stayed in a $2200 per night hotel. I doubt that I ever will.

The “average” Congenital Heart Surgery and hospitalization could easily cost $100,000. Where is a young family supposed to get that kind of money?

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Cheer Up!

October 7, 2010

It’s been a rough week for those of us with a Congenital Heart Defect, and things have been pretty gloomy here at Funky Heart Central. But a few days ago a friend took a photo and added some text. After it was printed, she and her husband signed it, slipped it into an envelope, and mailed it to me. It arrived today and things are beginning to look brighter! (Click Photo to Enlarge!)

Thank you, Amanda and Jim!!

 

Denver Congenital Heart Walk 2010

 

From Death, Life

October 5, 2010

Greater love hath no man than this, that a man lay down his life for his friends. – The Gospel of John; Chapter 15, Verse 13

I hate that he’s gone, and I hate everything about the CHD that took this perfect child from us. Nothing can replace him, and nothing will help us “get over” this. It is too much. – Comment left last night by Ewan’s mom.

Lord, yes. Nothing can replace him, and nothing should. This was a life cut much too short. It’s been a rough week in the Congenital Heart Defect (CHD) family, as at least six CHDers of all ages have passed. Always the optimist, my hope is that someone, somewhere learned something new from one these cases. And perhaps they can couple that new knowledge with what they already know and find the key that unlocks the mystery.

Older CHDers can help, too. Something has kept us going much longer than anyone predicted…what? When I shuffle off this mortal coil I plan to leave my heart to medical research. Let them poke and prod as much as they want, I won’t mind. And perhaps someone can figure out why some of us are only granted an hour upon the stage and then are heard from no more, while others seem to be here tomorrow, and tomorrow, and tomorrow.

There is a reason why that happens… what is it? We haven’t found it yet. But I live in the hope that if something – anything – is gleaned from such a sad event it will be knowledge. Even if all that is learned is what not to do, that helps bring us one step closer.

Replace the PulseOx test for CHD!

September 30, 2010

Just a few weeks ago the Pulse Oximetry test (also known as PulseOx) became part of the Newborn Screening Uniform Panel. In a post on this blog, we discussed how the PulseOx was a good test, but not perfect.

But what if we could discard the PulseOx, in favor of a better test?

Hot off the press – really, it hasn’t even been printed yet, it was electronically published before a print version is available – is a study by the University Medical Center in the Netherlands. Appearing in the European Journal of Clinical Investigation is a study (CLICK HERE to read the abstract) showing that certain biological markers do show up more often in children with Congenital Heart Defects! In the study, higher concentrations of S-adenosylmethionine, S-adenosylhomocysteine, and folate RBC were observed in children with heart defects.

(Don’t ask me to explain all that; it’s DNA and Molecular Biology with a little Chemistry thrown in for good measure!)

Could this test replace PulseOx? Perhaps… but not tomorrow. The study was a relatively small study, with only 329 children participating. (143 CHDers with 186 heart healthy children as a control group) The researchers themselves even stress that more research needs to be done.  But we could very well be looking at the first steps to a foolproof, 100% accurate “GOTCHA!” test for heart defects. And by studying the DNA changes that occur with a CHD, we could unlock the secret to how heart defects occur… and stop them before they begin!

Special thanks to Amy Basken for bringing this research to my attention. Amy is tireless, working for several different CHD groups. Today she represents Mended Little Hearts!

He earned it!

September 14, 2010

A mechanic is making small talk with a customer as he adds up the bill, and discovers that the customer is a heart surgeon.

“Doc, I just don’t get it,” the mechanic says. “I can take out a piston and grind it down to fit better. I clean dirty valves, I fill the engine with oil, and I can work on the electrical system. You bring me an engine that won’t run correctly and I can fix that thing so that it runs perfectly. We do the same job, but you make four times the money I do! I can’t understand that.”

“Well,” the heart surgeon said. “I normally do my work with the engine running.”

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!

Saving Grace

August 20, 2010

To the tune of Saving Grace by Everlast:

Two days ago she gave birth
Momma’s little girl fighting for all she’s worth
Don’t say her child isn’t perfect

So pretty & oh so bold
Got a heart full of gold but her hands are so cold
She said “I don’t even think that God can save her.”

Are we gaining ground
Am I losing faith
Doc can you help save my little girl Grace
I’m so thankful for this gift my Angels gave me

Don’t wanna leave
Won’t go home
Worried her child will be so alone
Just waitin’ for a miracle

Street wise from the boulevard
Jesus only knows that she tries too hard
She’s only tryin’ to keep the sky from fallin’

Day sixteen in Intensive Care Hell
Day or night she can’t tell
You think she’s strong but she’s just surviving

Operating room like a gambling hall
Walk in and bet it all
Surgeon smiles and says “She’ll make it.”
Throw your hands up and scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Amen!

One time around the sun
Another year older and your work ain’t done
It’s time to write the final chapter

Tell your story and tell it true
Tell everyone what your Grace went through
Until this disease is no longer

Then we’ll all scream hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah

Hallelujah…. Amen!

When the test doesn’t work

August 3, 2010

A recent clinical trial showed disappointing results: Enalapril, used to treat high blood pressure and heart failure, was being tested in infants born with a single ventricle heart. The basis of the trial was that since the drug works in adults, perhaps it will also work in children.

It didn’t work at all.  When the results were analyzed, the outcomes for Enalapril group and the Control group were  practically identical. The results of this randomized trial do not support the routine use of enalapril in this population, the researchers wrote.

Did the drug fail? Certainly, it did not produce the desired result. But the clinical trial shouldn’t be considered a failure – after all, now doctors know what not to do. They may not have any better answers, but now they know that prescribing Enalapril in these circumstances won’t work. And sometimes you have to learn what not to do before you figure out what you should do.

Cardiology is littered with the relics of operations, drugs, and procedures that were abandoned in favor of something better. As I mentioned in my presentation in Houston, I had the Blalock-Hanlon procedure during my first surgery in 1967. At that time it was done regularly – the only way to enlarge or create an Atrial Septal Defect was to open the Right Atrium and use a scalpel or a probe to literally poke a hole. Today the operation has practically been retired, since so much can be done with Catheters. Today’s Heart Parents have never heard of the Waterston Shunt or the Potts Shunt – both operations were dropped when someone thought of a better way.

When someone tells you they have had the Fontan, you should ask them when they had it… it has evolved over the years, and each version has good points and bad points. Protein-Losing Enteropathy (PLE) doesn’t seem to affect anyone except Fontan Survivors, and not all of them. And one day scientists will figure out PLE, or the Fontan will be altered again…. or a better procedure will replace it.

And who knows? Perhaps at a Congenital Heart Defect (CHD) Conference in the year 2041, someone will ask “You had the Fontan? What’s that?”

Heading for Houston!

July 20, 2010

Getting my plans together today to travel to Houston, Texas, for Hearts Re-United 2010! Hearts Re-United is a Congenital Heart Defect (CHD) weekend conference sponsored by Hypoplastic Right Hearts. Hypoplastic Right Hearts is a national CHD Support Group offering support for Heart Defects that affect the right side of the heart.

Our hotel is going to be the Hyatt Regency Houston, but the conference meetings won’t be held there.  We’ll meet Friday at the Houston Children’s Museum and on Saturday at the Houston Downtown Aquarium. At each location the parents and adults will be in the meeting rooms “talkin’ ’bout hearts” while the children are chaperoned in the exhibit areas.

I’ll be liveblogging both Friday and Saturday if possible – Not only do I have a new laptop (which I am still trying to figure out!) but also Wi-Fi access is limited in both locations. Plan B is to take good notes and post when I return to the hotel, but hopefully I can blog the meeting as they occur. Also I will be speaking on Saturday, and I will post the text of my presentation as soon as possible.

I’ll have to pace myself a little more than usual – hot and humid weather can be rough on a CHDer, so you have to take it a little easy. But with good planning and a good hat, the heat can be overcome. But be careful…. there is a fine line between overcoming the heat and letting the heat overcome you! Hopefully no one will have that problem!

I’ll get to meet a lot of Cardiac Kids and their parents while in Houston and I’m really looking forward to it! See all of you soon!

I’ll be there Thursday night;

How to give a baby an EKG

July 19, 2010

I was at Emory University Hospital for my checkup last year and a few moments before had been “strapped” to the Electrocardiogram, also known as the EKG machine. Really, it is called the ECG… EKG is from the original German name, which isn’t used that much anymore.

And they don’t actually use straps to hold the electrodes on you anymore. They did, in the 1970’s… I’ve been EKG’ed with sticky pads, straps, and for a while they attached the electrodes with little red suction cups. Those didn’t work out so well: they would often release from your skin with a “pop!” and when they came off in the middle of the test, the test was stopped and they had to start over from the beginning. A friend of mine commented that when they used the suction cups you always looked as if  you were covered in hickeys, but hadn’t been kissing anybody!

So I was getting my EKG done at Emory when the doctor stuck his head in just to say hi, and we were carrying on a conversation. The person who is being scanned is supposed to be still, and here I was talking with the doctor. Finally the EKG Tech rolled her eyes and said “Ya’ll Hush!”

We hushed! Both the Cardiologist and I looked a little embarrassed. I started to mumble an apology but I got THE LOOK from the tech. I always thought that only your momma or your girlfriend/wife could give you The Look.

You are supposed to be still and quiet when they do an EKG test on you, so you don’t affect the results of the test. Back in the mid 1960’s when I was born, there were a few other rules, too. You had to be quiet and not move; no one could touch you because the technology was still pretty fragile – touching the patient was thought to affect the test. And the EKG machines of the time were so slow that a test took about an hour. Following those guidelines – be still, be quiet, don’t touch the patient, the test will take about an hour – let’s see you give a baby an EKG.

Say what?

From what I have been told, doing an EKG on a baby could make a group of highly competent doctors look like the Keystone Kops. But someone at my local community hospital had figured it out, and gave my parents the best advice on how to make sure I was able to undergo the EKG: Don’t feed me.

He told my parents not to feed me that day, or if I had an afternoon appointment, feed me just a little in the morning. Then when it was time to do the EKG, hold my bottle just above my head and then feed me. As predicted, I was much too interested in food to think about moving around! And by standing beside the table and holding the bottle above my head, no one was breaking the “don’t touch” rule.

When you think of “Advances in Medicine”, you often think of new drugs, new surgeries, new technology. Big inventions that get your name in medical journals. But even little ideas – like how to give a baby an EKG exam, for example – help too!