A different way to take your pills

“Hey! Let’s be careful out there!” - Sgt. Phil Esterhaus, Hill Street Blues

You always, always, always need someone looking out for you while you are in the hospital. A trusted friend, someone who will look out for you. If you are under the influence of any kind of antistetic and not thinking straight, they can be your “second brain.” Later, when you have your higher thinking skills back, you can be your own advocate by keeping a notebook within reach and writing down the names of staff, the information they give you, your diagnosis, and any medications you receive.

The prescription process is complicated – it is designed to be, to prevent both fraud and medical errors – but mistakes can still happen. And they happen more often than you think. The experts say that on average, there is one prescription drug error, per patient, per day in US hospitals.

Let that thought rattle around in your head for a while.

But there is a simple step that you can take to lower the chances of receiving the wrong drug. Can you guess what it is?

Before I give the answer, let’s think about how you usually receive medication while in the hospital. It takes less than 30 seconds and you probably don’t even think about it – the nurse come into your room with a plastic cup containing your pills and a glass of water. You dutifully swallow the pills and follow it with the water. And you never get to see the original pill containers.

Your nurse prepares the medication at the Nurse’s Station desk, and it has been done that way for as long as I can remember. But to increase your safety, why not do it a little differently. Politely ask the nurse to bring your medication into your room in the original containers. And this is one of those time when you have to measure your words and ask politely, because if you don’t, most people automatically become defensive. I know I don’t like to be accused of doing something incorrectly. And I certainly don’t like to be told “You’re doing it wrong!” before I even get started! So this is when you need your best negotiation skills… and a little persuasion.

But you don’t have to accept a negative answer. Be polite – but firm. After all, those medications are going in your body!

Becoming a Heart Warrior, Part II

When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things. - 1st Corinthians 13:11

When you were a child, your parents took care of you. This probably included organizing your medications, making sure that you took them at the proper times, and picking up refills from the drugstore. But now that you are older, that responsibility should shift to you – and if you have any desire to be independent, you should welcome it!

But there is a flip side to the coin: These medications are confusing, difficult to obtain, and extremely important. They keep you going, and thought of taking control of your medication needs can be daunting. But don’t worry – its a little bit easier than it looks, if you have a system.

One thing you might find useful is this document: Drug Chart (.PDF file) Click the link, and a .PDF file will appear that you can use to organize your medications depending on the time of day that you need to take them.

Before you fill this chart out, make several blank copies or save it to your computer. Your doctor will change your medication, and you’ll need a fresh chart to write the new schedule on. At the top, near where it says “Medication List for” write your name – and write the date, too. If you go several months without having a medication change (lucky you!) you should still update the chart occasionally and change the date, so that everyone can tell that you keep your chart current.

Sit down and organize your meds, grouping them by when you take them. If this is your first time or the instructions on the bottles are confusing, get your parents to help. We’re not going to jump into this with no guidance at all; after all, you are learning how to take control of your health. It’s a process, and it is perfectly fine to get help until you feel comfortable.

Once you have the meds organized, have someone familiar with your routine double-check your efforts, and then fill the chart out. Now, I can take all of your pill bottles and mix them up, but as long as you have that chart, you should be able to quickly figure what you are supposed to take – and when!

A lot of CHDers organize a weeks worth of pills at a time, usually on the weekend. If this is the way your family does it, take over – but not all at once. One weekend a month, you take charge of organizing your pills for the week. As you gain confidence, work up to organizing all of your medications yourself.

Next, you need to learn how to take over getting your refills. You’ll need an index card (You can even cut it in half) and a calender. Not the family calender hanging next to the telephone, but a blank calender with enough space to write in the date blocks.

The easy part is examine every drug bottle and note how many refills that prescription has left. Write it down on your index card and keep the card in a safe place. This is easy, you’ll have a list that reads like this:

Nausea-B-Gone  8

NiceBeat  4

Blood Pressure 5

Every time you get a refill, take your list and reduce that prescription’s number by one. When you hit 0, you need a new prescription. Depending on the medication, you may be able to call the doctor’s office and ask for a new prescription. Or he/she may want you to come in for an appointment first. So as soon as you write 0, call the doctor’s office! That gives you plenty of time to see the doctor if that is what he/she wants.

Now you need your calender. Take your pill bottle and determine how many days worth of medication you have. If you have 90 pills and you take it twice a day, you have 45 days worth of medication. Count forward 45 days from today… now back up ten days. That’s the day you want to start thinking about getting your next refill of that medication from the drugstore – it gives you a ten-day “window” in case there is a problem getting the next refill.

Most drugstores don’t have an automatic refill policy, you will have to tell them that you need a refill. That can usually be done over the phone, by calling the pharmacy refill line and following the recorded directions. You usually type the prescription number (it’s on the bottle, following the letters RX) into the phone’s keypad and never speak to a person. Simple and easy!

I’ve made this explanation as simple as possible, almost to the point that readers might roll their eyes and wonder if I believe they know anything. I’m not writing for you today – I’m writing for those who realize that they will eventually have to take control of their own healthcare and may never have done any of this before. It is a lot of responsibility – don’t be afraid to ask for help and guidance as you learn. Because one day, this job will be yours, no matter if you are ready or not.

And – which is more – you’ll be a Man, my son! – If, Rudyard Kipling (1910)

New Blood Thinners!

The European Society of Cardiology held its annual big meeting recently, and the major news revolved around some new blood thinning medication coming to the market.

The two major blood thinners available now are Plavix, manufactured by Bristol-Myers and the second best selling drug in the world, and Coumadin, also known as Warfarin, which has been available for at least fifty years and is considered the “Gold Standard”. If you need to take a blood thinner, odds are you are on one of these two pills.

The new drug Pradaxa was compared to Warfarin and the results were roughly equal, with Pradaxa being slightly better. One advantage to Pradaxa is that the dosage is based on weight, not monthly blood tests, and there are fewer interactions with other foods and drugs. Not getting those pokes would be great!

Brilinta, another new anticoagulant, was tested gainst Plavix and found to be better at reducing heart attacks, strokes, and death. The study also found there were less bleeding problems with Brilinta.

A third drug, Dabigatran, was tested against Cumadin. In that study, Dabigatran seems to outperform Cumadin at higher doses and be roughly equal in lower doses.

All of these drugs are still in the testing phase – so it may be a while (quite a while!) before your doctor offers them to you for your anticoagulation needs.

Throwing my Readers Some Bonz!

This post may be a bit unfocused, as I really don’t have any ideas about what to write about today. My weekend has been full of “normal” activities, if you can call counting small pieces of candy normal. I bought a large glass jar with an airtight lid and a five pound container of Bonz – small (two centimeter long) pieces of candy shaped like little bones. They come in five different colors: red, white, blue, yellow, and orange. For a Halloween festival prize, I’ve sorted out all the orange Bonz, counted them, and filled the jar. Now if some lucky child can correctly guess the number of Bonz in the jar, they win the jar!

A much easier question to answer is “What kind of candy does Steve eat?” At least until the end of the year, the answer is going to be “Bonz!” I’m tempted to buy another airtight jar and use the red, white, and blue Bonz to make a 4th of July “Guess the Number” prize. With a good seal they should stay fresh until then.

As you can see, the life of someone with a severe heart defect can be shockingly boring. And I like it that way! The trick is to learn all you can about your defect, and your body. The second one comes only from experience, and could change at any time. But once you figure yourself out, you’ll have a good idea when something is “just irritating”, “normal for me” or just plain wrong. And then you can deal with it.

I think the first time that I realized that something was wrong with me was in the early 1970′s. I was less than eight years old, maybe less than six. We owned a white station wagon – make and model, I have no idea – and we had some kind of a dinner at the church. It was pretty much over, all of our dishes were loaded, daddy was sitting in the drivers seat, and I was playing in the back. I planned to crawl over the seat, but I slipped and went face first into the metal bar that you pressed if you needed to lower the back seat for more room.

WHAM! I literally saw stars.

Daddy looked back at me. “You’ve busted your lip,” he said. “Come here so I can clean you up.”

He was wiping my face with a handkerchief when I glanced up into the rear view mirror. I couldn’t see the cut (it must not have been bad, because I don’t have a scar) but I could see my bloody mouth.

My blood actually looked blue. Holy cow! Even when you are Cyanotic, you blood isn’t blue… a darker shade of red, perhaps, but not completely blue. But that is what it looked like to me. Remember, I was “knee high to a grasshopper” (Interpretation for non-Southerners: I was really young!) but that is the way I remember it.

I bring this up because I dreamed about that car last night. I dreamed that my brother had wrecked his car and had been given an old white station wagon as a loaner until his car was fixed. He came by the house with it, angry that he had been assigned such an old set of wheels. My mother commented that we used to have a station wagon just like that, way back in the day, and my father said “I actually think that’s it!”All my medication causes me to have some… interesting dreams!

And finally, be sure to check the blogroll for a new resource. I’m calling it “Medical Publications” but it links to pubmed.gov., which is part of the National Institutes of Health (NIH). If you receive government funding for your medical research, it must be published on pubmed.gov and be accessable to anyone. So go to the homepage, type your search term into the search box, and you’ll be presented with a list of available works on the subject. They will be very technical and full of “med-speak”, but if nothing else, you can see where major research is being done and contact them if you need further assistance!

Electro-Doc

A recent appointment with my Adult Congenital Heart Defect Cardiologist in Atlanta was going wonderfully, right up to the moment I got the ECG. (ECG stands for Electrocardiogram; it used to be popular to refer to it as an EKG, but ECG seems to be the favored term now.) The doc came back into the examining room carrying the ECG sheet, stroking his chin and saying “Hmmm….”

I cringed. Long ago, I learned that “Hmmm…” is doctor-speak for “Ut-oh.” Finally after a few moments, he says, “Looks like you are the proud owner of an Atrial Flutter.”

Proud owner? Yeah, right! Normally, the Atriums (the two top chambers of the heart) contract a few milliseconds before the ventricles do. With a Flutter – you can have an Atrial Flutter if the problem is in the top chambers of the heart, or a Ventricular Flutter if it is confined to the lower chambers – the two cycles become unsynchronized. One is slightly faster than the other, and the two halves of the heart aren’t working in tandem anymore. When it is mild it is a Flutter, and when it is more pronounced, it is a Fibrillation. Flutters can turn into Fibrillation, and a Fibrillation can be deadly.

“Double your dose of Amiodarone and have another ECG in two weeks,” the doctor instructed. “Have them fax the results to me. If it’s good, we’ll set up an appointment in six months.”

And if it is not?

“Be prepared to come down within a week, and perhaps stay a few days.”

There’s no need to worry about an ECG because nothing you do can affect the test. So in two weeks, I get the test done and have the results faxed to the ACHD Doctor. Later that day, the telephone rings: Be in his office on Thursday, I’m scheduled to see the Electrophysiologist.

I have no idea what an Electrophysiologist does, so I look it up. According to the dictionary, he “studies the electrical system of the body, concentrating on the heart.” Ok, but there is no description of exactly how he conducts his studies. I’d like to know if he is going to plug an extension cord into a live power source and then hand me the bare wire ends. “Here, hold this,” he tells me as he watches all of my hair stand on end. Things like that you just need to know.

Thankfully it isn’t that bad. Electro-Doc (my nickname for him, since Electrophysiologist ties my tongue in knots) starts by giving me a 12 lead Electrocardiogram. It works just like a regular ECG does, but there are a few more little wires running to your body. He also listens to my heart for a while longer than the usual exam, and questions me pretty closely about my health. After about half an hour, he excuses himself to consult with my regular Adult Congenital Cardiologist. The Adult Cardiology Clinic normally sees patients on Mondays and Wednesdays, but Electro-Doc is only in area on Thursdays. And on Thursdays, my doc is in an entirely different hospital. Thanks to the cell phone, this fact really isn’t a problem.

The minutes later he is back, and admits that he’s in a bit of a quandary. With an Atrial Flutter I should feel dizzy and lightheaded when the Flutter kicks in. I don’t. And I should be able to feel a Flutter when my heartbeat changes. I can’t. So after putting their heads together, he and my Adult Congenital doc have decided (drum roll, please) not to do anything at this time.

That may sound like a cop-out, but I don’t see it that way. Electro-Doc is going to proceed by how I’m feeling, not what the ECG tells him. The evidence – the ECG, his training, and what he’s hearing through his stethoscope – tell him that I am having an Atrial Flutter. But I’m telling him that I don’t even feel it. so instead of paying attention to the machinery, he’s going to pay attention to me…what a novel idea!

“Since it doesn’t seem to be affecting your heart rate, stop taking the Amiodarone,” he says. “Get an ECG in two weeks, if it looks the same, we’ll just drop that drug altogether.”

With that statement, Electro-Doc has just become my new best friend! Amiodarone is a very effective anti-arrhythmia drug… but it has some nasty side effects. It can cause damage to your eyes, your liver, your lungs, and your thyroid.

Every year that you are on Amiodarone, you must get an eye exam to determine if it has started to damage your eyes. Take a friend with you; they will put those drops in your eyes that cause your pupils to expand. They only expand your pupils for a few hours but during that time you are very sensitive to light and your close-in vision is worthless. Good luck reading a book or a magazine – or a dashboard, for that matter.

You’re also due for a breathing test every year if you are taking Amiodarone. You sit in a small circular box- actually a tube – about the size of a phone booth. (Remember those?) There is a breathing tube mounted in front of you; usually adjusted to be about a half inch higher than your mouth, so you have to sit up nice and tall to place your mouth on it. The technician will tell you to do various breathing exercises. A favorite one is “Take a deep breath and hold it, and when I tell you blow it out as hard as you can. Ready? Deep breath… hold it, hold it… now BLOW! Keep blowing, empty your lungs!” You actually blow out so much air that you involuntarily begin to cough before you can draw a breath. You’ll also see the computer generate many cool-looking graphs and charts while you are doing your breathing exercises, but you won’t have a clue what they mean. Take a friend to this test, also; after an hour and a half of various breathing exercises you are usually exhausted. It’s not unusual to nap in the car while heading home.

Your liver and thyroid are checked by blood tests. That’s nothing new to a ACHD patient, so you just roll up your sleeve a few more times a year.

My two-week ECG reading was the same as it was before Electro-Doc told me to quit taking the Amiodarone, so I no longer take that drug. But that doesn’t mean it’s gone. It can take as much as 100 days (over 3 months!) from the time you stop taking it for it to be completly gone from your system. By my count I’ve got about two more weeks, and then that nasty stuff is gone… hopefully forever!