Flecainide Acetate

Flecainide Acetate is the drug I was prescribed for my ventricular tachycardia. The doctor spent about 45 seconds with me before prescribing it, and didn't tell me anything about it or what it did, or why he was giving it to me. He just said "take two a day."

So, naturally I turned to the internet for information about this drug.

Maybe this was a mistake. Reading the warnings on this drug make it sound like it has as much of a chance of killing you as helping you. It's meant to treat only very specific things, and if you don't have them - or have them too severe or not severe enough - you could die. Wow. I really hope this doctor knows what he's doing.

For example, here's a fun one:

Use of flecainide is no longer accepted for treatment of less severe arrhythmias such as nonsustained ventricular tachycardias or frequent premature ventricular contractions, even if patients are symptomatic, because of results of a trial that found increased mortality in patients with non–life-threatening arrhythmias treated with flecainide

Umm.. okay - it says it is no longer accepted as a treatment for nonsustained ventricular tachycardia (NSVT) because it has the tendency of killing people who take it. So I know I have the ventricular tachycardia part, but what about the nonsustained part? I looked again to the Internets for help.

"...The term, defined as 3 or more consecutive beats arising below the atrioventricular node with a rate 120 beats/min and lasting less than 30 s,1–3 denotes an electrocardiographic finding that can be associated with an extremely wide range of clinical conditions, from patients with significant heart disease and annual mortality rates exceeding 50% to asymptomatic, apparently healthy, young individuals."

Okay, so apparently to be considered NSVT, the episode has to last under thirty seconds. The episode that they recorded on my holter monitor was 6 beats which lasted ~3 seconds.

So the first quote says "this is not accepted for NSVT because it can kill you" and the second part tells me that I have NSVT. It then goes on to tell me the mortality rate exceeds 50% with people who have what I have. So by taking this medication, I am apparently making my chances even narrower. Holy shit.

What's even worse than that is a sentence a little further down:

In several trials, reduction of arrhythmias or even arrhythmic death was not associated with a concomitant reduction in total mortality.

Great, so even if they wanted to do something about it, they couldn't.

All that considered, the saddest thing is that nobody I try to talk to about this seems to care. Doctors, I mean - they don't give me the time of day - they send me massive bills - and they don't explain to me what is going on or what courses of action I have open. They won't brainstorm with me or research what is going on . I always have a million questions when I go to a doctors appointment, but never have a chance to ask more than one or two of them.

Anyway, I think this about gets me caught up with everything that has happened. I left out several details, but this will give you the general idea. This is really the tip of the iceberg as far as what I've been going through with doctors and insurance companies, but I'll get into that more later. I've covered the most important and most serious issues here.

I will now start updating as things happen.

A Revelation!

They had finally found something - a potentially dangerous heart beat that was worth investigating and figuring out the cause of. The doctor had ordered an MRI to look at my heart - to see if they could find any clues.

I met with a special specialist who works specifically on electrical problems with the heart. Apparently he has a counterpart who work on only physical issues with the heart. Although nobody ever told me anything or explained what was wrong with me, I gathered that the fact I was meeting with this guy meant they thought something was wrong electrically, not physically with my heart.

The doctor, who I'm told is the best around, met with me for about a minute. He asked for my story and symptoms and kept interrupting me as he said "ya, uh-huh, okay, and what about this?" and wrote stuff down. He told me the MRI had revealed that I had a problem with one of the muscles in my heart. He said it was weaker than it should be, and we should investigate if this is the cause of my problems.

Okay, I have mixed feelings here. Although I love that they finally found something and are going to try to do something about it - having a weak muscle in the heart kinda sucks. It doesn't sound like something they can fix with drugs or surgery. At least if it was like a bundle of nerves or some problem with the electrical pathways they could just go in and fix it. It sounds like a weak heart muscle now means a weak heart muscle for life.

I wonder if they could have seen this with the original ultrasound I had probably two years ago? I'm going to try to get that record sent over to this new doctor.

The new doctor put me on some medication - flecainide acetate - 50mg and set me up with another appointment in six weeks. He also mentioned that we should probably do another MRI in six months to see if the problem is getting worse.

Technorati Tags: arrhythmia, cardiologist, doctor, insurance, weak heart

Progress?

Here I am, nearly five years from when I had my first symptom, still trying to figure out what is wrong with me. They say the problem with socialist health care is that it is slow and inefficient. I wonder if people who say that have ever tried to go to a doctor for anything more than a cough. I wonder if those people have ever tried to see a specialist. I takes months to see some doctors, and when you finally see them they spend less than five minutes with you and send you a huge bill.

I'll get into my political view on social health care later, for now suffice it to say I'm not necessarily advocating such a system because I think there are more options to be considered. But one thing I will say now is that the system we have now is broken, and needs to be fixed.

I had seen a doctor and decided to investigate my heart as a possible cause for the brain episodes I was having. He could not order a loop monitor himself for some reason, or another ultrasound, so he referred me to yet another cardiologist who could. This appointment took about 6 weeks to arrive. During this time, I kept a written record of every time I had one of these episodes, what I was doing at the time, what I had had to eat that day, and as much more information as I could think of. I was going to come prepared.

When my appointment arrived, the doctor just glanced at the list I had made and mostly ignored it. He spent about 45 seconds with me and ordered the tests that my family doctor already wanted me to get. This was an ultrasound and a long term holter monitor. I couldn't even get the holter monitor immediately - I had to wait several more weeks.

Finally I got the holter monitor. My test was to be two weeks long. I would wear the monitor and push a button every time I had one of these episodes. It would then record thirty seconds before and one minute after. During the two week period nothing happened. Frustrating, considering how much this test is probably going to cost me.

I pushed the button a few times during my usual heart weirdness stuff, but did not have one of these brain episodes - which is what we were trying to catch. At the end of two weeks I took the monitor back in and told the lady at the desk about my disappointment. She told me I could wear it two weeks longer at no additional cost if I had not caught what we were looking for. Score!

Nearing the end of my second two weeks, nothing had happened worth recording. Two days before I turned it in however, I was sitting up in bed and had one of these brain episodes. It was very minor - I mean on a scale of 1 to 10, 10 being the worst I'd ever experienced this was a 1. I almost didn't push the button but I figured, what the hell - its not like I have anything else.

I turned in my monitor and went on my way. I waited another couple of weeks for my follow up appointment with the cardiologist.

At my follow up appointment (which wasn't even with the cardiologist - but his assistant), I was told they caught something on the monitor. It was ventricular tachycardia - a particular type of arrhythmia that originates in the ventricle and causes your heart the beat very quickly (between 100 to 200 beats per minute). They had caught six beats in a row, and they consider anything over three to be this condition.

You can hear the heart beats when you call in a recording from your holter monitor. I remember hearing the quick beats when I had called it in, but I wonder when it actually correlates to me pressing the button. I wonder if it syncs up with the brain episode I felt. At any rate, its the best lead we have so far.

Ventricular Tachycardia is a serious, and potentially life threatening issue. I read up on it and learned that it could lead to sudden drops in blood pressure which could explain the brain episodes I was having. If that was indeed the cause, then it was happening much more severely than what they recorded. I don't know if that means longer tachycardia, quicker beats, or what - but definitely more severe.

I can't tell you how excited I was to finally hear something. To finally have them find something worth investigating. I mean, it sucks - there is something wrong with my heart that might kill me - but at least they're not going to tell me to not worry about it anymore. I wonder how many people die because they're not wiling to continue investigating and pushing against doctors for the many years it takes to get them to pay attention to you.

The cardiologist's assistant ordered an MRI. For the first time since this whole thing started, they actually even made me a priority. I had the MRI two or three days after the follow up visit, and another appointment with an even more specialized specialist a few weeks after that. They got me in a full month and a half before his next available appointment (thank you cute girl who works at the desk there).

The MRI was an interesting experience. One thing that I've noticed about the medical profession is that people don't like to explain things to you. They don't like to tell you what they're thinking, if they don't know whats wrong with you, or what is about to happen to you during some procedure. The MRI was no exception. I was basically given two IVs and told to hold still. Then a man over a speaker kept telling me to hold my breath. That was about it. I don't know how much this is going to cost me yet, but it's okay because I heard MRIs are really cheap. /sarcasm

Technorati Tags: arrhythmia, cardiologist, doctor, insurance, neurologist, EKG, EEG

It Gets Worse

(continued...) My brain episode problems became so bad that I decided to seek medical attention. Again, it had not occurred to me up to this point that this might be related to my heart problem. I went to my family doctor and told him what had been happening.

My doctor didn't know what it was and had never actually heard of anything like that before, but he said it was probably nothing to worry about (easy for him to say!). I didn't understand how he could not know what it was, but say I shouldn't worry about it. Shouldn't we figure out what it is? He prescribed me lexapro and sent me on my way.

Lexapro? Are you serious? That's what the other doctor put me on a few years earlier for my heart. What, are these guys getting paid by the prescription? As it turns out, yes they are. I took the lexapro for a month or two and went off of it. It's not doing anything about my problem, its just making me care less.

I sought the attention of a neurologist. It took several months to get an appointment, but I finally got in and was able to describe my symptoms to her. She had never heard of anything like what I was experiencing but said the repeated, hard to describe brain episodes are usually seizures. She scheduled me for a EEG (like an EKG but for your brain) to see if everything in my mind was running okay. I'm not sure how EEG's work, but it seemed like we wouldn't really accomplish anything unless I had an episode while they were monitoring me - an event which seems highly unlikely.

About this time I was running into another problem. How was I going to pay for all this? My insurance sucks and has high co-pays and deductibles. I was going to have to pay for the test out of my own pocket. What's worse, and this is a problem I run into for every medical procedure, nobody could tell me how much it would cost. Doctors do not have prices for things up front, their assistants don't know anything, and the insurance company has no idea either. So I'm supposed to go ahead with the test and just wait for the bill.

I eventually learned that such a test would probably cost me $500 or more. I began thinking very carefully about how I wanted to proceed.

I began thinking of the possibility that maybe a heart problem was the source of my head issues. Perhaps they could be explained by a sudden drop in blood pressure or a sudden surge in blood pressure. I went back to my family doctor and asked him. He seemed to think that could be a possibility and ran an EKG. He also referred me to a cardiologist.

So now I had before me two choices: proceed with investigating my heart, or proceed with investigating my brain. I really can't afford to do both. I'm already going into debt, I simply can't pay a lot of these bills.

I decide to investigate the heart issues, since I've already been having known heart problems for so long. I cancelled my appointment for the EEG.

Developing Problems

I tried to forget the heart problems I was having after being shut down by a handful of doctors and specialists. However, my symptoms persisted and seemed to worsen over time. I trusted the doctors - there was nothing to worry about, right? At least 5 doctors had told me so - so when the symptoms got bad - particularly at night when trying to go to bed - I just tried to accept that everything was okay and this was just something I would have to live with.

Whether or not it was going to kill me, having your heart do all sorts of weird things while you're trying to go to sleep - and being totally aware of EVERY beat has its own downsides. It's difficult to sleep when you are constantly reminded of your own mortality and that your body contains moving parts that will eventually wear out. I was pretty much an insomniac before, but now its official.

I went a year or two trying to ignore the problems and hoping that eventually they would go away. Then I ran into a symptom I had not experienced before, and this one scared me more than anything.

I was sitting forward at a friends house playing a video game (Halo, if you must know) when all of the sudden it was as if someone had punched me in the head hard enough to nearly knock me out. My head became heavy as lead and I felt as though I would loose consciousness for sure. The episode was so sudden I shook and dropped my controller but it was gone before I could even grab my head. The whole thing lasted less than a second.

Wow, I thought, I've been playing too many video games.

Up until recently, I never thought this symptom was associated with my heart. In fact, I'm still not sure, but we'll get to that.

I went a good long time without ever having that symptom again. I figured it was just too many video games and brain overload.

Then it happened again. And again. And again. All the episodes were spread apart by months, but it seemed to be getting more frequent. I never passed out, but each time it happened I felt as though I would. I thought it must be some mild form of epilepsy because it seemed to happen mostly when I was starring at a computer screen. I worried about it, but not enough to see a doctor.

Eventually, last year it started happening a lot. I mean a lot. I started getting more frequent and then it would go away for a while. Then it would start happening again even more frequent than before. It would come and go in these cycles, and the cycles kept getting closer and closer, and each cycle became worse and worse.

At some points, I would get these episodes several times per day. Sometimes they would be accompanied by general lightheadedness. In fact, one time I was even very lightheaded for almost an entire day. Then, inexplicably the symptoms would disappear - only to return again in a few months or weeks.

The First Signs of Trouble

I'll try to keep this as short as possible, but I wanted to catch up on the story so far. This is my "life story" posts, so to speak.

Sometime in 2003, I was sitting aboard an airplane nearing the end of my flight coming home from California. The plane had hit some turbulence and at one point seemed to drop for several second before catching the wind again. Everyone on the plane seemed to be freaking out, and I was no exception. I already have an (irrational?) fear of flying, and pretty much anything happening aboard a plane scares me.

I felt my heart skip in my chest and was filled with an empty sinking feeling. The feeling continued even after things had calmed down, but eventually subsided. At the time, I didn't think anything of it. Within the next few weeks, I felt the same feeling again - this time lying on my back in my bedroom. I was suddenly aware of my heart more than I had ever been, I could feel it beating throughout my body. Mostly, I could notice that the rhythm of my heart was not constant, in fact it was all over the place.

Although this worried me, I waited it out and eventually forgot about it. I had been under considerable stress at the time and figured it was just my body telling me to chill out a bit.

Some time later, I was going up on a camping trip with a friend. as we drove into the mountains the feeling returned. In fact, in between this time and the time in my bedroom, I had felt it a couple times. This time it was worse though, I began having a hard time breathing. I began to panic.

I tried to calm down as I called my insurance company to see if they had someone I could talk to for medical advice. They told me to pull over and call an ambulance. Having had experiences with ambulances in the past, I instead asked my friend to turn around and take me to the hospital.

The doctors hooked me up to a EKG and watched my heart for some time. The frustrating thing is that once I got into the hospital I felt much better. As if being around doctors made me feel more relaxed and my heart went back to normal.

The doctor confirmed that I had an arrhythmia (irregular heart beat) but that it was probably nothing to worry about. He did suggest I wear a 24 loop monitor (basically a 24 hour portable EKG) just to make sure. I was to push a button every time I felt something weird happening and they would look at it later to see what it was.

The test revealed a few different types of abnormal heart beats, but nothing serious they said. Around this time I also had my blood tested to see if it was possible a problem with my thyroid. No tests showed anything to be concerned about.

However, my problems persisted and even seemed to worsen. I saw another doctor who ordered a ultrasound of my heart to see if there was anything structurally wrong and that we needed to worry about. Again, the test showed nothing out of the ordinary.

After symptoms continued to worsen, I once again sought help - this time from a cardiologist. It took several weeks to get an appointment, but finally I was able to visit him. The doctor spent about 20 seconds with me. He walked into the room and said "Look, I'll save you a bunch of money - go get treated for anxiety." I wasn't sure what evidence he had that there was nothing to worry about, as I hadn't even talked to him yet, but clearly he wasn't interested in chatting about my problem.

I went back to my family doctor and told him what the cardiologist said. He put me on 20mg lexapro for about six months. While this didn't seem to make the problem go away, it did do a good job of making me care less about it. I'm not sure what the cardiologist was thinking, though: anxiety is causing my heart problem, or my heart problem is causing anxiety?

At any rate, the problem never went away.

The insurance company initially denied my first hospital visit but soon realized they couldn't well deny it when they were the ones who made me go.

Technorati Tags: arrhythmia, doctor, insurance, cardiologist

Why I'm Here

I have created this blog for the purpose of documenting my adventure through the American health care system. Being a health care "regular," I have all sorts of insights and information that I feel people should know about how our system works, and what is wrong with it - from a first person, front lines perspective. I'll try to be as open as possible about everything going on.

Mainly, I want a place to vent and talk about my health care issues where people can read about them, but not necessarily people that I know. I hope you enjoy.

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