A Personal Guide to Living with a Heart Murmur
Heart Murmurs. Not Always as Scary as They Sound
My chronic illness led to the discovery of a heart murmur. My pre-med courses covered the heart's system but I never thought it would ever apply to me. When you are in your twenties, healthy, and in good shape you assume your heart is one organ to never worry about. Unfortunately, heart murmurs affect more people than just senior citizens. You can be a newborn and have one.
So when I got diagnosed, I did what I typically do in health situations which is ignore the problem. My cardiologist was treating it so there was no need to share with my parents or family it's existence. The idea of it presenting a problem did not occur until I went to the urgent care (fancy name for hospital place where you can see doctor's for minor things on weekends) to get treatment for a sinus infection. I wanted it to clear up before flying out the next week. He looked at my chart, said the infection wasn't bad but because of my heart valve problems I definitely needed antibiotics. I was amazed he was so worried about a little thing. Then I finally started looking into heart murmurs and realized, 'yeah. I might want to worry about it a little.' O and then I told my parents who freaked out and worried a lot.
My own heart murmur is treated and monitored (I will explain more) and now I understand why. I also get why I now need to take antibiotics before a dental procedure and the importance of actually getting treatment for infections instead of ignoring them. If you know someone with a heart murmur, have one, or are just plain curious then this lens is written for you. I will use my own experiences to give a better understanding of how it is diagnosed, what it means, and how it is treated. May your heart be healthy!
Do you have or know someone who has a heart murmur?
Just what IS a heart murmur? - I knew but I didn't KNOW
Simply put, a heart murmur is an unusual or extra sound which is heard during your heartbeat. In the video below, you will hear the sound of a normal heart. What you are hearing is the valves of the heart opening and closing as blood is pumped through them. When you have a heart murmur, there may be very faint or very loud sounds like a whooshing or swishing noise.
This is the Sound of a Normal Heartbeat - Pretty isn't it?
I believe the best way for you to know what a heart sounds like is by actually hearing what it sounds like for yourself.
Tests For a Heart Murmur
How do I know I have one?
Sometimes a doctor can tell a patient has a heart murmur just by carefully listening through their stethoscope to the heart's beat. Other times more sophisticated tests are needed. I will cover several of the most common (which I have had done)in separate modules but for now I will just introduce them.
One of the simplest tests is an EKG or electrocardiogram. I get one done every time I see the cardiologist and it takes about a minute's worth of preparation and lasts only a few moments. My cardiologist also has me get an ECHO or echocardiogram every six months or so. They are like an ultrasound for the heart. One test which is just plain annoying is having to wear a heart holter monitor. They attach it to you and you get to spend a whole day (s) walking around with it monitoring your heart. One of the more invasive tests is a TEE which you get done in a hospital. They put you in an awake yet asleep state and do an ultrasound from inside. Mine backfired and I ended up in the ICU which is not supposed to be the case.
What is an EKG? - Is it painful?!
Thankfully an electroardiogram is not painful. A nurse will come in with the machine or if you are visiting a cardiologist, it's already there, and then stick electrodes in places all across your chest. You might not want to wear a skin tight mini dress as they have to put the electrodes against your skin. They then connect the electrodes to the machine, press a button, and a few moments later out comes what is in the picture above. Totally painless but very important as the test detects and records the electrical activity of the heart.
The readout was a source of misery to me in one of my health courses because we had to interpret it and it's incredibly confusing unless you do it regularly. What those lines are saying is how fast your heart is beating and whether it has a steady or irregular rhythm. They also show the timing and how strong the electrical signals are as they travel through the heart.
This test is one of the first used in the Emergency Room to determine whether or not a person has had a heart attack. Thankfully, I have never had one but an EKG could tell my doctor if it was happening. The EKG can also help doctors rule out specific heart problems which makes diagnosing the patient a lot faster.
What is an ECHO? - Is it the same as an EKG?
Echocardiograms, better known as ECHOs, are not the same as an EKG. They are a bit more complex. When you go to get an ECHO, the nurse will have you change into a very 'attractive' hospital gown. After you fail at tying up the gown, the nurse will ask you to lie down and out of nowhere, produce the very cold ultrasound gel. If you have known someone who is pregnant/seen a movie with someone pregnant/have been pregnant then you know what an ultrasound is. They put gel on you and then grab a large 'wand' known as a transducer. You will start seeing a picture of you heart in black and white (sometimes weird colors) on a monitor. The picture is produced by sound waves directed at your heart via the wand held to your chest.
I find this test painful because I am very bony. The nurse has to push hard and the test can take up to forty-five minutes. The test time actually depends on the person's skill at taking quality pictures of the heart. My last one was twenty minutes thanks to the woman's 20+ years of experience. We talked during the test and she explained all the different sounds I was hearing. Your heart valves make a variety of sounds some of which are a little freaky.
Unlike your EKG, this test gives the doctor actual pictures of your heart. They can see the size (my heart is not enlarged thank you very much body) and shape of your heart. The nurse once told me she had a patient where the heart was on the wrong side of the body! Doctor's can also see how well your heart chamber's and valves are functioning.
What might they see? You might have areas where the blood circulation is very poor, some heart muscles might be functioning abnormally, there may be signs of buildup, or previous injury (maybe from a heart attack) where poor blood flow left signs of damage.
What is a Heart Holter Test? - Why is that man so happy?
I would rather have an EKG or ECHO over having to wear a heart holter. Especially since the day I got mine I ended up spending three days in the hospital (a coincidence but annoying all the same). A heart holter is a special portable device which is attached to you and allows the doctor a continual EKG record. I only had to wear mine 24 hours but some people need to wear it for up to 72 hours. I have no idea how those people shower as you cannot get the monitor wet and cannot take it off without it messing up the reading. If you have worn a holter for longer than twenty-hours, how did you shower? I am curious to know how it worked out.
So what is the purpose of a heart holter monitor? The monitor can allow the doctor to detect intermittent heart rhythm irregularities. For example, I have fainting problems but I don't often keel over at the doctor's office (it has happened) so how can they look into the problem? This is wear the Holter monitor comes in. They get to observe the heart nonstop and catch the moments which do not happen at the office.
What is a TEE? - Sounds Intense. It is.
A trans esophageal (TEE) is a procedure which is far more complex than either an EKG or ECHO. This is one which must be done inside a hospital. In my case, it was in the cardiology unit where everyone was about three times my age (at least). For this procedure, you get another 'attractive' hospital gown and then are wheeled into a special little room. You get an IV (always a good time) and then the doctor sprays your mouth with an absolutely foul substance to numb your throat.
The nurses administer a drug which keeps you asleep but awake (you do not remember the actual procedure) so you can cooperate with the doctor. Why do you need to be asleep/awake? It's because they stick a transducer down your throat to do an ultrasound through the esophageal wall. This gives them a better view of the heart than an EKG, ECHO, or heart holter. If you want to read my experience, the lens below gives a rough outline of the nightmare it became or you can read the complete version in my book (it's getting there!).
I have a heart murmur! - Am I going to die?!
Many heart murmurs are perfectly innocent. They are often found in perfectly healthy children and are not the result of health problems. Sometimes they appear in pregnant women and are simply caused by the extra blood flowing through their bodies. So having an innocent heart murmur does not mean there are heart problems or conditions causing them. Some people just have unique bodies with an innocent heart murmur.
My heart murmur is not perfectly innocent. Sadly, two of my heart valves have decided to just do 'their own thing.' What that means is I have a mitral and tricuspid valve regurgitation. In simple terms, when my heart beats some of the blood leaks backwards instead of moving completely past the valves.
Some people suffer from congenital heart disease (more on that later) or have an acquired heart valve disease (more on that later as well). Sometimes people with anemia or hypothyroidism have a heart murmur. Once their problem is treated, the heart murmur should disappear.
So do not freak out before you know the cause. Your heart murmur, especially in a healthy child or pregnant woman, has a good chance of being perfectly innocent. So before you start giving away your prized possessions and writing a will, calm down and see what your doctor has to say.
Congenital Heart Defects - A very, very broad topic
If you have a congenital heart defect (CAD) it means you were born with it. These are the most common of defects found in newborns and over 35,000 babies in the U.S. alone are born with one(s). So what is it? These defects cause a change in the way blood normally flows through the heart. They may affect the inside of the heart, the valves, the arteries carrying blood away from the heart, and the veins returning blood to it. Some of the defects are severe and life-threatening while others are so small they have no symptoms.
I have no idea if my heart murmur is congenital or acquired. If it was there from the beginning then nobody noticed it or perhaps it happened later on. Some people with congenital heart defects require no treatment whatsoever and some may just need a simple fix. Then there are people who are born with serious heart defects. They may require life-saving procedures immediately after birth and have a life-long heart battle before them. Every step of their lives including playing sports, being pregnant, or holding a job will need to be monitored. Some are bedridden for life and others may only be saved through a complete heart transplant.
Guide to a Child with Congenital Heart Defects
I would need hundreds of lenses to cover just the basics of congenital heart defects and disease. To save you time I have put together a list of books which will help you learn more on the subject.
Acquired Heart Valve Disease - You are not born with it
People with Congenital Heart Disease are born with the problem but those with Acquired Heart Valve Disease are not. They have problems with one or more of the four valves in the heart. Sometimes the problem shows up suddenly like in the case of a heart attack. At other times, doctors may discover the acquired heart valve disease through a routine examination. Unfortunately, there is no cure for acquired heart valve disease. Patients with severe problems can have surgery to replace the valves but most doctors will manage the symptoms instead of opting for such an invasive procedure. Most heart valve problems will grow progressively worse over time so part of treatment is finding ways to delay future complications.
Acquired Heart Valve Disease - Another Broad Subject
Once again, it would take me hundreds of lenses to explain the complex world of heart valve disease so I have put together a few books to give you a better picture!
My Heart Murmur Treatment - Treating the symptoms on a daily basis
To treat my heart murmur, my cardiologist has me take a daily regime of beta blockers and alpha antagonists. My beta blockers help with one of my worst symptoms, tachycardia. Before becoming ill my heart rate ran in the nice high 60s to low 70s. Now it beats typically at 90 or above. This has become normal so a day for me with tachycardia means my heart is racing extremely fast. Once I found it was over 140 and it feels like it wants to burst out of my chest. Even showering takes a massive amount of energy because my heart is working in overdrive. My beta blocker works to slow my fast heart rate to it's now normal rate of high 80s to low 90s.
The alpha antagonist I take twice a day is meant to help with my very low blood pressure. Wait! High heart rate and low blood pressure?! Isn't it supposed to be the other way around? Yes. Usually a person with high blood pressure will have a high heart rate. For some reason mine goes in the wrong direction. When the two get so out of balance I have a habit of keeling over. So to keep me from fainting (and getting another concussion) the prescribed alpha antagonist monitors my blood pressure.
I also use lovely Jobst stockings. Actually, they are morbidly uncomfortable but I wear them daily. On long flights I get the lovely thigh-highs which have some nice lace at the top (I think their version of making them attractive?) which have to be glued and re-glued on over time. Before you start thinking I am going around with Elmer's glue, let me assure you it is a very high-quality, ten dollars a bottle, clear nail-polish looking glue.
The Latest in My Treatment - Ridiculousness
My heart rate has been having a lot of very bad days so in addition to more alpha antagonists, I got started on a lovely regimen of supplements. My doctor informed me its for people with heart failure but not to worry, I don't have heart failure. The whole list is rather confusing and requires a schedule which somehow has to mesh with all my other medical problem medication schedule. It's very confusing as I have to take things at certain times but some have to be with food, others cannot be to close together, and if I were to forget a pill then my symptoms get worse. I always say I am a walking pharmacy. Whatever problem you may have, I've got a pill for that.
So being myself, I even created a lens on finding the right pillbox. I believe any experience in life is useful so I share what I have learned so others can benefit. If you lay around feeling bad about everything it just makes you depressed. So I keep myself busy and it makes my life a much happier place. I also recently got back to being able to crawl up the stairs (I needed to be carried/half carried) after several weeks of literally living in my bed. Some people might not see something to celebrate in such a simple thing but I was outrageously excited. Of course my dog still runs up and down them ten times before I can make it up but I am okay with it. The pace does not matter as long as I am able to move on my own.
The Future With a Heart Murmur - Monitoring is Key
Books on Heart Disease
Heart disease is the number one cause of death in the United States. This is very sad because there are so many ways it can be prevented and managed. So learn about heart disease and get healthy!
Since its discovery, there has been no change in the valves condition. When my cardiologist said my valves sound good and things hadn't changed I was ecstatic. The whole week I went around saying "the cardiologist said my heart is doing good!" I was so happy and thrilled to know at least one part of me is doing its best to be healthy.
So what about the future? My hope is there will be no worsening in my valves performance over time. Medically it is common for people to hit there 40s and eventually need a valve replacement. I sincerely hope my case never comes to that. In the meantime, I see my cardiologist regularly and keep up monitoring the problem. Most people with a heart valve problem causing an abnormal murmur are the same. We receive treatment for the symptoms (like me taking it easy and needing a trainer) and keep up regular testing. The future is never a sure thing but you can keep a lookout for complications before they become deadly. In the mean time, I will continue living my happy chronically ill life!
This picture is of my friend and I out for a summer night. I may live with a confusing mess of pills and medical problems but I believe in enjoying every moment. No matter what happens I am going to reach for the stars and not forget who I am.
Books on a Heart Healthy Diet
Everyone knows how important diet is to living a healthy life. You may say you had no idea but now you do. So look into your diet and be honest. Are you eating nothing but junk? Do you live on your couch? I'm not judging if you do as I pretty much live in my bed but I also try to take care of my diet and get in exercise. So start thinking about making a change and make your heart happy.