“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.


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

  1. Kerri Pennington Says:

    Speaking of many things…I have a question concerning Medicare/medical expenses. We are extremely blessed that Mary Clare has had no home health assistance required. We’ve had a pretty cut and dry case of HLHS, so far. We had her at MUSC, she had her Norwood at MUSC without complications, she had her Glenn at MUSC without complications and we are home now. No therapy ever. No feeding tube ever, no home oxygen ever, and only blood pressure meds two times a day and 1/2 baby asprin.

    We opted not to apply for Medicare when Mary Clare was born because we have excellent insurance. We understood that finances don’t come into play when HLHS is a diagnosis, that Mary Clare’s condition alone qualified her. We, however, were skeptical about utilizing Medicare for fear that “sometime down the road” it may affect her social security, other gov assistance, etc. that she may need… not sure why we feel this way, but we didn’t want her to max out anything that she may need later on in life..??

    I know, sounds dumb, but I really can’t find the answers that I’m looking for. I’ve made a few phone calls to SC gov offices, but no luck. Since you are an adult with a CHD, would you mind addressing your medical costs/insurance coverage/gov assistance, if any?? We were also told that it would be difficult for Mary Clare to obtain life insurance in the future…Should we consider Medicare after so long??? I have so many questions and the phone calls that I’ve made haven’t answered specific “heart baby” questions. Any information would be so beneficial!! You can email me directly!! I appreciate it so very much! Kerri Pennington

  2. Steve Says:

    Hi, Kerri!

    When I went to Baltimore for the ACHA to talk to the Social Security Policy Committee (see September 25th’s post, “We’ve got something to say…”) we learned that they have items they call “unidirectional listings”. That’s basically government-speak for medical problems that lead to almost instant qualification for Social Security/Disability. You have to be able to document the defect, of course, through “Medical imaging” or a catherization, but once that is done, you’re qualified. I *THINK* HLHS is a Unidirectional Listing. (All the attendees received a notebook with the program, the speakers, and any material they might have to refer to, but a “list” of ULs doesn’t seem to be in it.)

    It is going to be difficult for your daughter to qualify for insurance on her own; right now she is probably covered under your or your husband’s policy as a minor. The first words out of an insurance company’s mouth when she applies on her own is going to be “Pre-existing Condition!” and they won’t touch her. The laws will certainly change by then, but when she gets old enough to work, she should consider the job’s health coverage – that will be more important to her than pay and time off. Hopefully she’ll be picked up by her employer’s group plan. Drug costs are reason enough to get on Medicare. Medicare Part D drug coverage will make things reasonable.

    And please, don’t follow my advice – I’m not a lawyer or an expert!

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