Posts Tagged ‘Heart Book’

In case of Emergency, Break Glass

May 18, 2010

Note: This is the entry I posted last night. It was active for about five minutes before I pulled it down to tell you about Gabriella’s heart transplant. (She’s awake and doing well, at last report!)

The day is going normally and suddenly you (or your Cardiac Kid) have a problem. And it’s not a stubbed toe or a skinned knee, it’s a We need to go to the hospital right now problem. What do you do?

Your first move should be to grab your Heart Book. What’s a Heart Book? Glad you asked!

One of the most frustrating things about Congenital Heart Defects (CHDs) is that they affect each one of us differently. My Atrial Septal Defect (ASD) is slightly bigger/smaller, it is in a different location in the Septum… whatever. The end result is that two people with the same defect rarely have the same symptoms.

And you need to assume that when trouble happens, you’re going to be quickly overwhelmed. You’re suddenly stressed out, you aren’t thinking clearly, and if you are the patient you could be in pain. No matter why, just assume that mentally you aren’t going to be much help.

So the first thing you should do (or do after calling 911) is to grab your heart book. Since CHDs affect everyone differently, your treatment plan is going to be different – and the information your doctor needs is in your heart book.

First, your book needs to contain all your important personal information: Copies of your driver’s licence, birth certificate, insurance policies, Organ Donor Card… what ever you need to prove that you are you, that goes in the front of your heart book. If you travel internationally it wouldn’t hurt to put a copy of your passport in there, also.

Next, you need a drug chart. CHDers medications are usually pretty involved; so I’ve included one as a .pdf file in the blogroll. (or you can CLICK HERE to download it) Save a copy to your computer (you’ll need another copy when the doctor changes your meds!) print out a blank copy and fill in your medications and dosages. Keep a current copy in your Heart Book.

Have a page outlining your heart defect, the name, address and phone number of your cardiologist, and general treatment options. Also be sure to note what shouldn’t be done. Saline? Ok, but I’m on a low sodium, controlled liquid diet, so I’ll probably need an extra dose of diuretics later. Keep pumping me full of saline and things might get ugly. MRI? No way Doc, I have a pacemaker! Echocardiogram or CAT scanner for me!

Get your cardiologist to draw a diagram of your heart with all the surgical corrections. Speed may be critical when you have an emergency, so don’t make the Emergency Department doctors get an x-ray to figure out what is going on inside your chest.

You can also include EKG forms in your folder, that will be helpful. You’re going to have a strange beat pattern, so it will help if you have an EKG strip taken at a regular checkup, so they can see what your heartbeat normally looks like. Getting an EKG strip isn’t hard – the next time you have one done, just ask. Some will just run two strips and give you one, others will photocopy the original. You may have to sign a form that says you asked for it, in case there is every any question, but there shouldn’t be any problems getting your EKG. Be sure to update it occasionally and keep it current.

Now here’s the hard part – we’ve got to take this information and condense it. Remember, this is your secret weapon that you only use when there is an emergency, so we don’t want to present the doctors with a copy of War and Peace. You need to get the important information across clearly, concisely, and quickly. Ask your doctor. Better yet, catch an Emergency Department doctor when he isn’t on duty and ask him/her: If I came into your hospital with this information, would it help you do your job?

I hope this information will help you put together a terrific Heart Book that will be invaluable.

And I hope you never have to use it.

(Don’t) Follow the Plan

October 28, 2008

First, a quick update on two of our friends: Colby is home! As it says on his blog, he went before the Doctor’s Parole Board and they released him on good behavior. As of this writing Katie is still scheduled for a Glenn Shunt tomorrow. Keep this young lady in your thoughts.

If you are putting together a heart book, a good starting point is a copy of the surgical notes. The surgical notes are written by the surgeon (or one of his assistants) after an operation; basically they are a “play by play” description of the operation. Modern operating rooms can be outfitted with recording equipment; the surgeon describes the operation as he works. A boom microphone above his head picks up his words and the tape is transcribed later. (Modern operating rooms are amazing, a surgeon can pause long enough to say “Please replay the MRI from last Monday” and it will appear on a video screen. Usually there is a computer tech controlling the system, but more and more often the computer can do it automatically!)

Surgical notes are very detailed, as operations have become more and more complex the level of detail in the notes has increased. Alfred Blalock’s notes on the first Blalock-Taussig Shunt are an incredibly short two pages. (Page One, Page Two) In surgical notes being written today, you may read a page and a half before the first incision is made.

Reading the notes are very difficult: they are meant for the official medical records. Normally you won’t receive a copy of them, you will have to ask. If you or your child are still in the hospital, getting them could be as simple as asking “Say doc, can I have a copy of this for my personal health records?” If you’ve recently been released, make an appointment with the surgeon. You’ll probably have a follow up appointment anyway, let him know beforehand that you’d like a copy of the surgical notes… and for him to go over them with you. Surgical notes are written in “Medical Talk”. If you don’t speak Doctor and have a good working knowledge of Anatomy, you’re going to be lost. That’s why you want an expert to review them with you – and who better than the person who performed the procedure? (It would help to give the doctor ample warning and to discuss the notes during a regularly scheduled appointment, even if you have to make an appointment just for the discussion. Extending your “usual” appointment really isn’t fair to his other patients.)

If you had your surgery a long time ago, you will have to contact the hospital where the surgery occurred and request the notes. Be prepared for a wait. You will have to fill out a form to release the records (even though they are your records)… the HIPAA laws require it. And then… be patient. Your records may be stored somewhere away from the hospital, and someone’s got to dig them out. That might take a while.

You really need a copy of all your surgical notes, if you can get them. Surgery is like Chess – everything starts from the same point, and there are a limited number of opening moves. All Bi-directional Glenn Shunts, for example, start the same way. Surgeons are the Grandmasters; they have the ability to think three steps (or more) ahead and they know when it’s time to deviate from the accepted course. You can’t learn this skill by reading a book, it only comes with training, repetition, and an inborn skill. They just know what they need to do next, how it is going to affect the body, and how to react if a crisis develops.

Every surgery is different, because your surgeon is reacting to what he finds inside of you. So even though we may share the same defect and the same surgical procedures, our insides may be totally different. So get those surgical records, having them could save your life!

Your Heart Book

October 22, 2008

Before we start, this is too good to pass up, but almost too short for its own post. If you haven’t seen Something the Lord Made and are still wondering if you should, here’s just enough to make you want more:

Go ahead and go to the video store, we’ll wait! 🙂

I really wish that there had been time to at least drive by Johns Hopkins Hospital when I was in Baltimore recently; I haven’t been there since I was a little boy. All I remember about the hospital was the large statue of Jesus. (Seen over the guard’s shoulder when he tells Blalock that Vivien Thomas has to enter through the back door) No doctors, no nurses, just that large statue. He’s 10 feet tall, and the podium he is standing on is at least four feet high. And when you are five years old looking up at Him, he looks like he’s several stories tall!

Now on to the subject of today’s post… do you have a Heart Book?

Actually, you need two heart books, and maybe three. And I’m not talking about a product you buy at a hospital or order from a website: It’s actually a plain notebook. You make it into a Heart Book.

Whenever a doctor tells you something that you need to know about your (or your Cardiac Kid’s) heart, you write it down. This is the reason you want two notebooks: One of them a nice, fairly large notebook, and the other a smaller pad, one that can fit in your pocket or purse, or even fit snugly into your waistband at the small of your back if needed. You use the smaller pad to write down any information about your heart that you might need to know, and later, transfer it to the larger notebook. The smaller book is your “scratch pad”, while the larger book is something you can refer back to later if needed.

The smaller notebook can also be used to write down any questions that you might have for your doctor as they come to mind. Try to write down the actual question; too many times I write just down “key words”; when I read them later, I’ll think of the actual question. The problem is, it doesn’t always work that way. Too many times I look at my key words and ask myself “What did I mean by THAT?!?!” So you can use your smaller book to write down your questions and to summarize the answers, and transfer it to the larger Heart Book in nice and neat text. If you have to refer to it in a crisis, you want to be able to read it.

People who are really, really organized may want to get a third Heart Book. They would use the first two as already described, but the third book would be even larger than the second and perhaps even alphabetized. Then, they would transfer the information in the second Heart Book to the third, nicely organized and cross referenced. For example, if your doctor says “Eating 1.7 ounces of Chocolate at 4:00 PM each day will eliminate the need for all of your medication!” (How I wish that were true!) the organized person would write that fact under C for Chocolate, D for Diet, and M for Medications.

That’s a little too organized for me, but some folks like to do it that way. If you do, more power to you! But no matter how you do it, you really need to start building a Heart Book.