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.