Is ICD therapy being over-prescribed to us?

Think about this. A couple of months ago I attended a conference on Hypertrophic Cardiomyopathy where a leading cardiologist presented a slide that showed the U.S. as the number one country in defibrillator implants in the world.

The graph showed the U.S. with 421 implants per million population (2003 data). Germany was a far second with 133 implants per million. All other countries followed, Japan being the last on the list, with only 17 implants per million.

Just look at the graph and you must ask yourself:

Why the huge gap between us and them?

Is ICD therapy being over-prescribed to us? On the contrary, experts say. Despite us being ahead of the rest by a 3 to 1 ratio disparity, some doctors (and device makers) say that we still have a long way to go before we can raise the U.S. number of implants to what it really should be.

They claim that Sudden Cardiac Arrest (SCA) continues to be a leading cause of death in this country and that clinical evidence clearly supports ICDs as first-line therapy for prevention of SCA.

So, I get it. We need to be implanting a lot more ICDs to get our doctors and device manufacturers happy. But how many more?

Dr. Anne Curtis, director of cardiology at the University of South Florida and former president of the Heart Rhythm Society (HRS), says that this number should be between 700 and 1,100!

During a talk at the HRS 2008 conference on May 16 in San Francisco, Dr. Curtis explained:

There’s been some analysis of Managed Care in Medicare Databases showing that ICD usage is 416 per million population in the United States which has been contrasted with an identified range of over 700 to 1,100 ICD candidates per million. So we are using ICDs in only about half of the eligible patients.

(Watch the video on Medtronic’s site. Registration is required.)

She’s not alone. The report cited by Dr. Curtis concludes that, based on discharge diagnoses, many patients who could benefit from ICDs are not receiving this therapy today. The report ends by suggesting that the reasons for this “underutilization” of ICDs in the U.S. should be addressed.

As a pace-free and shock-free ICD recipient, and in face of such disparity, I have to wonder if I really needed my device.

After all, at an estimated cost of $90,000 over a lifetime, and in a world where big business often puts money before ethics, it’s hard not to raise an eyebrow.

July 2008 User Group Meeting

We had our monthly meeting at one very beautiful horse ranch this month. Guin, our host has a very scenic ranch and invited the group for a summer style BBQ. We had great food, good conversation and a wonderful view. What could be better?

Instead of my usual rambles, I will just post up a link to the images. Enjoy!

Our Amazing Little Pumps

At a recent doctor visit, I got to hear my own heart beat. Granted, due to the underlying cardiomyopathy, it didn’t sound like what I expected, but it was interesting to hear the thing that has occupied so much of my concern for the last two years.

I am coming up on the two year anniversary of my implant and that has me thinking about all the people that have been listening to my heart... and there have been lots! From nurses to doctors to well, more doctors. I wondered what they actually hear. We have all heard heart beats. Can they tell that much from just a quick listen. Really what was the big deal?

After we covered all my questions and any recent info with the doctor, he motioned to the exam table and I hopped up. As he was about to take a listen, I mentioned that I wanted to hear it too. He immediately gave me his stethoscope and helped me position the ear buds and placed the drum to his heart. My first thought was that it sounded just like the heart beat from the Dark Side of the Moon album. Thump thump. Thump thump. Thump thump. Then he placed it to my heart… and there it was… Thump thump swish. Thump thump swish. Thump thump swish. It turns out I really do march to a different beat.

Since then, I keep thinking about my heart beats. Ever second of every day, my heart keeps going. Granted at times it races dangerously fast but so far it has corrected itself. And, just in case it doesn’t some day… I got the ICD standing by. Until then, my thump thump swish goes on.

Beta-blockers and ICDs

Here’s a question that just came in from Australia. It's about beta-blockers and ICDs.

Hi, I’m in Australia and looking for information about beta-blockers and adverse effects.

The hospital is considering me for a pace-maker/defibrillator if the drugs don’t work. At the moment the beta-blockers are actually killing me and I can’t find anyone else with my symptoms. I thought I would be able to get off the beta-blockers if I had an implant but one of the nurses said that's not true.

I can’t continue with the beta-blockers because I have had several near death experiences on them. On one occasion the ambulance guy said he only just arrived in time, a couple of minutes more and I’d have been dead. I end up in the ER almost weekly with this reaction. Do you have any advice or know where I can look for advice?

Let me preface this by saying that I’m neither a doctor nor we have doctors in our group. I, and others in the Bay Area ICD User Group, are recipients of ICDs with a panoply of heart conditions (dilated cardiomyopathy, HCM, Brugada Syndrome, etc). I write to you from my experience as a patient, and not as a doctor.

Having said that, I believe that the key to your answer is in your underlying heart condition (which you don’t mention). Has your cardiologist given you a diagnosis?

ICDs are usually prescribed as treatment for abnormal heart rhythms. Depending on your heart condition, this could mean a rhythm that's abnormally slow (bradycardia) or a rhythm that’s too fast (tachycardia).

You say that the hospital is considering you for "a pace-maker/defibrillator if the drugs don’t work." This "either-or" approach sounds unusual to me. An ICD is not a substitute for pharmacological therapy. In fact, it is more commonly used in conjunction with a drug or drugs. Look at it as just one of the tools doctors have in their toolboxes to manage your heart disease.

Beta-blockers, on the other hand, are used to help control your heart rate. They are there to slow down your heart, to lower your blood pressure and are often used in combination with diuretics, digoxin and ACE inhibitors.

Again, I don’t know what disease afflicts your heart. But I believe your nurse is right in saying that the ICD implant will likely not get you off beta-blockers. I, for example, am on beta-blockers and have an implant.

You also say that the beta-blockers are "killing" you and you can’t find anyone else with your symptoms and mention near death experiences as a reason to stop the beta-blockers.

Keep in mind that when you just start taking beta-blockers, your symptoms often become worse while your heart adjusts to the medication. This can take up as long as two and a half months.

However, there’s also a possibility that the beta-blockers are slowing your heart too much. Beta-blockers can be harmful if you have extremely low blood pressure or a slow pulse. It can cause you to feel dizzy or light-headed.

You should not stop taking your beta-blocker without speaking to your doctor first. Even if you feel that it is not working. Beta-blockers should not be stopped abruptly or your symptoms might worsen.

If you still feel you’re not getting the answers you seek regarding your medical care, I’d suggest you get a second opinion from a different cardiologist. Remember, as a patient, YOU are your own best advocate!

Best of luck to you.
Hugo.

Effective communication with our doctors

I am getting ready for my check up appointment with my HCM Cardiologist and I am feeling little apprehensive about the visit. Ever since the diagnosis, visits to the doctors seem suddenly anything but routine. It is sort of like walking on a thin line, I want to know what is going on, but I don’t want to hear anything bad. The truth of the matter is I really only want good news. And there will be some, I have lost a good amount of weight and effectively reduced my BMI, I have been more active and so I feel a bit stronger and less winded. I know that puts less strain on my heart so that is good. However, there is also the dramatic increase in pacing from my device that has been going on since I have been on medication and that worries me. Also an increase in the pain around my heart and a disturbing inability to sleep laying flat are definitely on the chat list.

I don’t know what these latest symptoms are from, it could be a side effect of the medication or it could be from the underlying heart condition itself. Either way, these questions are worrisome and I need to discuss it with my doctor. And that is where my stress comes in. How do I talk to my doctor, give him the information he needs and get answers and not seem like some freaked out hypochondriac? In other words, how do I become an active participant in my medical care?

With that in mind, a book recently caught my eye… “How Doctors Think” by Jerome Groopman, M.D. The book gave me a bit of insight into the pressure on a doctor. Without coming off as a preachy or defensive, but the book offers a perspective from their point of view.

The way doctors think is something that is drilled into them from the beginning of their training. In a nut shell they are taught to look at the symptoms, think of the known causes for them and test to see if you which one is the cause. The problem is that many illnesses and diseases have similar symptoms. To deal with this, the law of averages comes in, and doctors are taught to think of the most common cause. Often, this means that doctors toss out the symptoms that don’t fit, or stop considering any other causes in a sort of tunnel vision way. When the cause it not the most common problem AND the patient just doesn’t let the doctor know the symptoms are still present, misdiagnoses occur.

I remember going to my primary care physician several times for other reasons and in passing mentioned the ‘racing heart and light headiness’ I would sometimes feel. I had felt them forever but they did seem to be increasing in frequency and becoming stronger. The typical office visit would go like this; after we had discussed whatever else I went to see her for I would mention the sudden fast heart rate, she would bring up hormone fluctuations or maybe sensitivity to caffeine, she would ask me if I wanted to do an EKG and I would say no it isn’t important, and we would not pursue it. Each time I brought it up, I would feel silly and worry that she would think I was looking for something to be wrong. And really, I wanted to believe it was nothing harmful so I just stopped mentioning it. There had been two deaths from ‘heart attacks’ in my family (Grandfather and Uncle) but my cholesterol, blood pressure and heart rate were all good so I was not at risk for heart attacks so why pursue it? About a year later, while I was being prepped for small procedure that had nothing to do with my heart but required general anesthesia they decided to run an EKG because I was over 40 years of age. That test found a problem, that lead to a referral for an echocardiogram that showed the typical thickening of the septum between my ventricles that led to the diagnosis of obstructive hypertrophic cardiomyopathy (HCM). HCM as it is now known is the leading cause of sudden cardiac death world wide.

Now two years later, I have learned a great deal about the disease, about treatment options, about my family history and about my own symptoms that had been present since I was a child but never properly diagnosed. However, I am still learning how to be an active participant in my health care.

This is made difficult by the changes roles currently taking place in healthcare. Doctors are no longer the pinnacle of knowledge they once had been (Doctor/Gods). They are under scrutiny from insurance companies, governmental regulations and laws, patients and even their peers as they never have been before. The information on the internet and in TV commercials is mostly helpful but at times misleading and inflammatory. And don’t forget that personal injury lawyers are waiting in the shadows to jump on the smallest little thing. To make ends meet doctors often have to increase their patient loads.

That leads to shortened visit times and rush to get to the next patient. I have to be honest here, my doctor takes as much time with me as I need and I am grateful for that but since he does that with all his patients, that means he is often running late. That makes me feel like I need to hurry to help him catch up and so I tend to hurry through my issues and most often forget to mention something. This is a disservice to my doctor as it may be that the things I don’t mention are important and he should have known before he decided on any changes in my treatment.

What can we do with the time we have with our doctors? Here are a few suggestions.

1. Make sure you have the right fit for a doctor. Doctors are people too and each has their own personality. That doesn’t change just because they put on a white coat. As with all people, some get along well and some don’t. If you don’t feel comfortable for any reason, find a new doctor.
   My PCP always touches me on the arm during our hellos and initial conversation. That makes me feel like she cares and is there for me, but anyone who knows me, knows I value touch (I am touch happy to the core). But that may not be the same for the next patient. If you are uncomfortable with your doctor, how can you have open and relaxed dialog? And, speaking of dialog, your doctor should never talk down to you, if you don’t understand what they are saying, tell them to write it down. That applies to terms, medication names and treatment plans (how do you think I learned how to spell hypertrophic cardiomyopathy, my doctor wrote it down for me)
2. Make a list of questions ahead of time. Don’t skip over any of these questions even if the doctor is in a hurry.
3. Add these questions to your list:
   
   A. What are the other possible causes for these symptoms? The book specifically brings this question up to help your doctor break out of the tunnel vision that may result from earlier conversation. If nothing else, this question will remind him/her to keep the other possible causes in mind and your doctor should be willing to talk to you about them.
   
   B. What are the expected results of this treatment/medication. With medication, don’t forget to ask about side effects and possible interactions with other meds!!
   
   C. If this test/medication/treatment doesn’t bring about the expected results, what is the next step?

This isn’t anything earth shattering, but these small steps will help to focus your questions for your doctor, ensure you tell your doctor everything and make the best of both your time.