Tougher than Steel

Katie Manning’s dad continues to use her blog to work through his feelings after losing Katie, and he’s been writing some great stuff lately. He recently discovered a fact that I hadn’t even really thought about… all these “tough guys” he sees as he goes through life don’t have a clue. Compared to a Congenital Heart Defect family, those “tough guys” are wimps.

Heart Families are tougher than most. Yes, the pressure and stress of a major illness does tear some families apart, but those families built on a strong foundation are brought closer together. They stand strong, and they stand together. You just can’t shake them. They’ll go to the ends of the earth for their Cardiac Kid, and if they have to, they’ll tie a rope and drag the earth along behind them.

There is a scene in the movie Apollo 13 that sums up the type of determination Heart Moms and Dads usually have: An engineer walks into a room and dumps a box of gear on the table in front of his team. “We’ve got to figure out a way to make this (Holds up a square piece of equipment) fit into this (Holds up a round piece of equipment) using nothing but that.” And before the deadline, they’ve figured out how to do it!

I was having trouble with my surgical wound healing after my third operation, and the eventual answer was packing the incision with Dakin’s Solution. Dakin’s Solution is a diluted antiseptic, strong enough to knock out germs but gentle enough to be used on exposed tissue. But it doesn’t keep well, and you have to make it as needed. So I was faced with staying in the hospital for a while while the Dakin’s did its job. My dad is experienced in Chemistry, and convinced the doctors that he could make the formula at home (it really is pretty simple). So that was the deal: We could go home if someone would repack my wound twice a day with gauze dipped in Dakin’s Solution.

Dad is not a fan of blood and guts. Oh, he knows the stuff on TV is mainly ketchup, but real tissue and body fluids… no way. Ain’t happening. But he took a deep breath, steeled himself, and repacked that incision twice a day for six weeks.

You do what needs to be done.

TWO New Organizations!

There are not one, but two new organizations in the blogroll! The first is Hearts of Hope, a CHD Support group based in Sacramento, California. Most of the members seem to get their medical care at Sutter Memorial Hospital, but I bet they’ll welcome members from anywhere. Hey, they published my story, and I’m about as far away from Sacramento as a person can get!

Katie’s parents are starting a 501 (c) (3) nonprofit group in her name! The website – Kisses from Katie – just went live yesterday. They already have an event planned, a toy drive at the Connecticut Post Mall in cooperation with the Milford Police Department. They really need your help – not only with the toy drive, but also if you have any experience in setting up a Nonprofit organization or are just willing to help out around an office, I’m sure they’ll be glad to talk to you. So if you are in the Milford, Connecticut area and can do anything, contact them through Kisses from Katie.

“The time has come to speak of many things.”

Katie’s father continues to write on her website, working through his emotions at this trying time. He’s a really good writer! I’m sure he’s not writing for style or content, but he’s very eloquent.

While not concerning Congenital Heart Defects, this is important information to have in case of a heart attack: Find out if a hospital in your area supports the STEMI protocol, and try to find out their Door to Balloon time. Then contact the organization in charge of Ambulance Services in your area and find out if and how their vehicles and First Responders are coordinated with STEMI. During a heart attack, time is muscle – the longer it takes to get quality care, the worse the damage to the heart. A properly organized STEMI response can cut that time. Here’s a good example of STEMI in action: Ambulance dispatched: 8:07; Catherization Balloon inflated: 9:08. Another example is provided by Elaine, a brand new nurse who sees a STEMI developing in the ER. The STEMI system isn’t perfect, but it is a good start. CHDer’s usually don’t have “traditional” heart attacks, but it is good to know this information, just in case a friend or family member has one.

How to help prevent medical mistakes. Also, ten questions you should ask about your scheduled surgery.

If you see an elf, blast ‘im! (Link from The LawDog Files. The title of his blog always reminds of the classic line from the movie Tombstone.)

Gene therapy for Congestive Heart Failure (CHF)! If that doesn’t work, perhaps a gas will. (Careful of that gas, though! This is not a Do-It-Yourself treatment!)

This will be great – a pacemaker powered by the heart itself! Here’s a photo. And here’s Georgia Tech’s version.

Just in case you haven’t figured it out, we’re spending a lot of money on health care for chronic diseases. How much? TOO much – just read question 1. More than half of us can’t afford what we need, but a lot of that money could be saved… both in the private sector and in Medicare costs. New MRI scanners and CT scanners add a LOT to total Medicare costs – and that’s not installation costs.

There are two ways to cut your heart attack risk – take Crestor, which cuts your heart attack risk 44% (and costs a pretty penny) or get up off your butt, lay down the smokes, and take care of yourself! Exercise even helps Congestive Heart Failure (CHF) patients, who usually show up in the Cardiologist’s office so much, we qualify for frequent flyer miles. The problem is, given a choice between taking a pill (and perhaps having someone else pay for it) and taking care of ourselves, a lot of Americans would take the easy way out. And that little fact is making The Happy Hospitalist have a 100% officially certified BAD DAY.

I tend to agree with him.