Years ago I was diagnosed with a heart murmur: Artic valve regurgitation. It was mild and most doctors couldn't even hear it unless there was something going on with my system like an upper respiratory infection. I was told that I should see a cardiologist every few years just to keep track of it, to make sure it did not deteriorate. In all likelihood, someday I would end up having to undergo valve replacement or repair surgery but that was the extent of it.
Flash forward to 2000. I'm about to be married, my career is transitioning but doing well, and I'm having chest pains. I hadn't been to a cardiologist for awhile so I decided to go ahead and get checked out. I figured it was probably heartburn but better safe than sorry. The cardiologist agreed and suggested we run a treadmill test just to make sure.
A couple of minutes into the test I threw them a curve ball when my heart rate shot up and the EKG went to the odd side. They hit the panic button, threw me on a bed, and in came the football team. The cardiologist jumps on me and gives me a couple of chest thumps. I pretty much threw her off at that point and we entered a 30 minute standoff, with me telling them to stay away from me and tell me what was going on, while they insisted they needed to get an IV started and hit me with Lasix.
They finally told me what was going on and I ended up spending the night in the hospital. Apparently some cells in my heart had caused their own heart beat - an electrical anomaly. The next day they wanted to run a full electrophysiology study (EPS) but were confident that I had SVT (supra ventricular tachycardia). The doctor had not reviewed my case fully. He hadn't even looked at the results of the echo performed that morning, yet they wanted to do an EPS. That includes shocking the heart into an abnormal rhythm so they could see where it originated, then ablate (kill) the erring cells. They were disgustingly condescending.
I told them that we should step back because I wanted to review what was going on, research it. They said that was fine, that obviously I wanted to satisfy my "academic curiosity" and since I was young with no other symptoms or problems like diabetes, and since they were sure it was SVT, they would cut me loose. That was the last time I had anything to do with this group of cardiologists. That was September of 2000.
I continued on with my life, made a radical diet change (became vegan for a little over a year) and put it behind me. I had a few panic attacks in the middle of the night but otherwise there were no problems.
A couple of years later we were about to have our first daughter and I was experiencing breathing difficulties all of a sudden. I made an appointment with a new cardiologist, thinking this was a minor issue. The doc looked over my EKG and echocardiogram. Then he told me, "Your case just got more interesting." This is not what one wants to hear from a cardiologist. This was when I was first diagnosed with a left bundle branch block. Follow-up testing included a cardiolite stress test - like a normal stress test but with radioactive juice to get a good 3D pic of the heart first under exercise conditions then under rest conditions. The tests confirmed that I had congestive heart failure with an EF of about 35%. I began the medication run with Prinivil and a diuretic (Lasix, furosemide).
At follow-up appointments, we adjusted medication. I moved from Prinivil to Cozaar due to the side effect of dry, scratchy cough. We also added Coreg, and adjusted its dose. Everything was relatively uneventful. Then in February of 2003 they performed an echocardiogram during an appointment that showed my heart condition had deteriorated. Healthy hearts pump at a 55% or more EF. The year before mine was 35%, and now it was 25 to 30%.
The question now was why I had lost 10% function and in such a short time. One possibility was sleep apnea so my cardiologist ordered a sleep study. The results confirmed that I had mild sleep apnea and in late March I began using a CPAP.
In May of 2003 I met with my cardiologist and we ran another echo and EKG. In April of 2002, my heart was normal size at about 5.1cm. This February (2004) it was enlarged to 6cm. In May of 2004 it was about 6.5cm. My ejection fraction was slightly improved at 25 to 30% and my heart rate was 76 with blood pressure of 128/80. Curiously enough, my aortic valve performance was slightly improved over previous echocardiograms.
The cardiologist previously thought perhaps sleep apnea was the cause and wanted to rule it out before proceeding to a biventricular pacemaker. He had expected a significant improvement in EF after 3 months on the CPAP, but there was only a very small improvement. The cardiologist was now convinced that my left bundle-branch block was responsible for the deterioration and suggested we move forward with the biventricular pacemaker.
My sleep doctor, Dr. Javaheri, is known throughout the US for his work with CHF patients and is well published. It is thought that many CHFers also suffer sleep apnea. In Javaheri's opinion it takes a solid 6 months of compliant CPAP use to see improvement in EF. The cardiologist commonly sees significant improvement in 3 months. He has seen cases where a patient's EF is 10% and after 3 months on CPAP they bounce back to 50%.
After discussion, I convinced the cardiologist we should give the CPAP a little more time to work and he convinced me to get my appointment booked since it takes about 3 months to get into the electrocardiologist's as there are few that do this procedure. The appointment was set for mid-August with my cardiologist and for September with the electrophysiologist.
A biventricular pacemaker's third lead does not actually embed in the ventricle itself; instead it is inserted into a vein along the ventricle. The catch is that the phrenic nerve which controls the diaphragm is right there. Also, about one in 10 persons have an anatomy that doesn't support the usual positioning of the third lead. The August appointment with my cardiologist showed stability and that was about it. The heart measured in at about 6.3cm and my EF was about 25%. It was on to meet with the electrophysiologist for an evaluation.
After talking to me and hearing of the things I do - I'm fairly active in ways many CHFers are not - the electrophysiologist suggested we raise the medications. Since many CHFers are physically unable to do many of the things I currently do, the EP doc said that based on what he saw and what I told him, he did not think there was much benefit for me to get a BiV pacemaker. He thought that these pacemakers do not correct the underlying cardiomyopathy and will pretty much only ease CHF symptoms. This opinion is not shared by all cardiologists. There is also always the risk of infection, complications, and so forth. Based on all this, it was pretty clear that a pacemaker was not the way to go.
I explained to the doctor that this was all fine and well, but that I was concerned about a sudden cardiac event. He suggested we run a T-wave alternans test to see if there was any variability in the microvoltage of my T-waves. This came back positive but that's not a positive thing to hear. In studies, people with positive results on this test are at higher risk for arrhythmia. Based on the T-wave alternans test, the EP doc changed his mind and wanted me to have a pacemaker installed, along with an ICD. When I ran this by my cardiologist he agreed very strongly. It was pretty clear we should move forward with the doctors' recommendations.
We took about 2 weeks to struggle with it and ended up scheduling the appointment for 10/31/2003 - on Halloween. It seemed appropriate to me, I have a dry sense of humor. A week or two before the surgery I went through the normal paperwork type stuff of hospital registration, letter and phone call from the EP's office on prep and so forth. For 2 days prior to surgery I had to take a shower and use Hibiclens on my skin to prep for the procedure. I could not eat or drink after midnight the night before the surgery. I also could not take my meds the morning of the surgery but I was told to bring them with me to take later that day.
I reported to the hospital to do the flood of paperwork and signatures at 6:00 AM. They drew blood, then put me in a room at about 7:30 AM, ordered me to strip and put on a gown that naturally did not fit, and inserted the IV. I'm no good with needles so this was tough for me. The gal that drew my blood was phenomenal. I didn't feel a thing for the first time ever, but the IV was painful. Thankfully it was in my forearm rather than in my hand so it was at least bearable. They then wheeled me down to the operating room and I said good-bye to my family.
I told the staff involved in the procedure that I was super-nervous about it all and not happy that I would be awake. They reassured me, cracked a few jokes, told me I would be in a twilight sleep and it would be just fine. The anesthetist asked me if I had kids and I told her I had a 20 month old and a 2 month old. At that point I think she hit me with the Versed because the next thing I knew, 4-1/2 hours had gone by, the procedure was over, my shoulder was tender, and the doctor was telling my family how things had gone.
I later found out that there was a single complication. The first time they inserted the third lead, it was too close to the phrenic nerve and was pacing my diaphragm; translation, they gave me a bad case of the hiccups. They retracted it and used another vein that worked just fine. Apparently I was a bit "chatty" so they upped the Versed dose. <g> I remember them turning on a radio with rock'n'roll playing, trying to adjust my position because my arm was uncomfortable and maybe even trying to get up, but that's about it. At some point I started saying, "Ow, ow, ow!" as well.
The incision is about 3 inches long on the left side of my chest and I have a little bump. Most of the day of surgery was spent drifting in and out of micro-sleeps of about 5 or 10 minutes after I got back to the room. By 8:30 at night I was pretty much wide awake and didn't go to sleep until about 3:00 AM. Naturally, they came in and woke me up every couple of hours for something or other. I had 3 runs of IV antibiotics during the following 24 hours. After the surgery and through to discharge, I was in a sling designed to keep my arm immobile.
My shoulder really hurt, they put the device beneath my muscle. After returning home Saturday morning I started taking Advil (ibuprofen) with good results. At 7:30 AM Saturday (the day after the surgery) they took me down to X-ray to get a gander at the leads. While I was there, the rep from Medtronics arrived to do a quick check and tuneup on the pacemaker. He pronounced it to be working properly and moved on to other patients. The doc came by to give me a once-over shortly thereafter and I was checked out as soon as the last dose of antibiotics was in me. By 10:30 AM I was back home and sitting on my own couch.
The area was tender of course and I was paranoid I'd make a movement that would throw a lead or damage it in some way. My first day or two was more a matter of discomfort. Advil did wonders for the pain but it was still awkward. After I awoke from a sleep, stretching, I decided it would be wise to continue using the sling when I slept just to make sure I didn't move in such a way as to damage the system. Being home during convalescence was definitely a plus for recovery. My total time in the hospital was about 30 hours.
Motion after the procedure was limited. I could not put my arm over my head, made no sudden or jerky movements, and it needed to be used very little. I had a weight limit of 10 pounds and I was a little stiff. At 4 days out I was fairly impressed with how quickly I was recovering. I was up and about, handling minor day-to-day tasks like getting something to eat or drink. I did not need assistance with relieving myself and for the first time I bathed myself, with extra care to avoid the incision area. One thing they emphasized to me over and over was not to get the incision area wet so I had no showers for a week.
I had my follow-up 12 days out, which was a little later than the doc would prefer but there was a weekend, then a holiday. When I went, I did not see the doctor, only a nurse. She put a small device over my shoulder (it looks like a computer mouse) and then used some equipment to query the device. This took about 15 minutes. When she was satisfied that all was as it should be, she took off the steristrips - at least some of the steristrips; one she could not get off cleanly. They did not come off well at all. She did substantial damage to the skin around the incision and it scarred up at that. In hindsight I wish I had simply told her to leave them. When I have this unit replaced, I will tell them to leave the strips alone. At this visit I was cleared to drive and shower, have unlimited use of my right arm, but still had a 10-pound and parallel to the ground lifting limit on the left arm.
After about 6 weeks, I had my first follow-up with my cardiologist. This was the test. An echocardiogram would determine if the pacer had any positive effect. For the first time in 2 years of treatment, my cardiologist came back with something good! My ejection fraction was estimated at 30 to 35% and my heart had not increased in size any further, staying at about 6.5cm. He again emphasized that I needed to do the exercise and diet bit.
I am now about 10 weeks out since the pacemaker was implanted. I still have some symptoms but it is not clear exactly why, especially with the sodium issue. I have resumed most normal activities. I raise my arm over my head (carefully) and lift 20 to 30 pounds with my left arm (again, carefully). We are concerned that a pacemaker lead may be damaged since I still have symptoms. My daughter has hit the area pretty hard and my sister grabbed my shirt, thumping that side of my chest. The area still hurts when any kind of pressure is applied as well. A call to the electrocardiologist was dismissed. They're convinced that with the pacer implanted so long before these events occurred, the leads are pretty much fixed properly in place and there's no need to come in before my late February appointment. We'll see how that goes.
| 12.5mg Coreg | BID |
| 20mg furosemide | Daily |
| 50mg Cozaar | Daily |
| 100mg CoQ10 | Daily |
| one OmegaZen 3 | Daily |
| 400 IU vitamin E | Daily |
| 500mg vitamin C | Daily |
| 500mg Hawthorne extract | Daily |
As I began to evaluate my diet and prepare to start exercising again, I realized that although I was told to have a low-sodium diet, no one had ever told me exactly what that meant. Now obviously it means low salt, that's clear, but how much is low? I had figured I was doing just fine - we didn't eat out very often, never cooked with salt, never used table salt except on french fries and popcorn, but ya gotta have standards! Although I could do a bag of potato chips in a single sitting, I tended to only do that rarely. Something did not quite ring right though, so I called the cardiologist and asked how many milligrams was acceptable. His response was 3 grams per day (3000mg).
I was absolutely floored. Three grams seemed a speck in a spoon. I began to jot down a number of things that I ate regularly and pulled their sodium counts at the rates I ate them, rather than the so called single serving: Who really believes that a can of condensed chicken noodle soup has 2-1/2 servings?! What I found was even more alarming:
So a meal of macaroni and cheese, say 2 cups, with canned veggies (1/3rd of a can), and meat (like say 2 pork chops with about a teaspoon of Garlic Pepper cooked on it) is over 2300mg of sodium. So I started doing some more research and found that most cardiologists recommend CHFers get no more than 2000mg sodium each day. My daily diet was about 4 to 5000mg. My all-time favorite meal (Gold Star Chili's Super 3-way, 2 Cheese Coneys, and 2 packs of chili crackers) was nearly 5000mg by itself. The US RDA for sodium is 2400mg per day.
The short answer was to eliminate all processed foodstuffs from my diet and start cooking. Canned items are among the worst items. My first 4 days at it were productive. I managed 1700mg, 2500mg, 3500mg, and 1900mg. Future efforts should stabilize at right around the 2g marker since I have time to get foods precooked and ready for those unexpected meal times.
I also make regular smoothies for breakfast with the following recipe with a total of 351mg sodium:
The "Life's Greens" are from Vitamin World. Their web site says, "... packed with greens, herbs, fiber and other important nutrients. Green Source Powder has 350 mg each of wheat, oat, barley and alfalfa grasses, it also contains blue green algae plus nutrient rich super foods like lecithin, vitamin E, acidophilus and natural fibers. This formula is completed with green tea and other bioflavonoids."
May 30, 2004 - My February 24th appointment with the electrophysiologist went fine, with nothing new to report. I am now down to eating about 2 to 3 grams a day. I am going easy on the Green Source tablets because they contain some herbs known to cause blood pressure issues, like goldenseal. I quit taking carnitine and a multivitamin. I have a semi-final bread machine recipe for my white bread that has less sodium in the entire loaf than half a slice of brand name breads. I gave up margarine entirely and now eat unsalted sweet cream butter. I don't have many smoothies these days either.
James - May 30, 2004
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.