Jim Langebartels

I was diagnosed with a heart murmur at age three, and this was followed with regular check-ups throughout childhood. Of course, I didn’t know what “heart murmur” meant, except that I got a stitch in my side whenever I tried to run like everyone else could. I had a catheterization at age ten with the diagnosis of mild aortic stenosis. I shudder to think now of what that was like, since there have been so many improvements in medical techniques since then (1965). I remember little of it now, except that I was hospitalized for several days; this was not an outpatient procedure, as it is today.

            The heart murmur was checked from time to time over the years, although probably not as regularly as it should have been. I remember having some sort of test about the time Shirley and I got married, and at that time the very helpful doctor acquired for me the records of my previous catheterization. Every doctor that ever listened to me heard the heart murmur, but it was diagnosed as mild aortic stenosis. After I finished school and entered the ministry, stress would occasionally bring on physical problems, as with anyone else, but not heart related. I did go to the doctor once complaining of chest pains, but that was diagnosed as only stress. I definitely got burned out at one point about ten years ago, but that didn’t bring on any heart problems.

            Shortly after we moved to our present location nine years ago, I visited a local cardiologist and had an echocardiogram done. I was quite pleased with it, since we were able to compare the records from thirty years earlier and establish that in all that time there had been no change! I, at least, thought that was excellent news, and that I would not have problems from the heart murmur for years to come. The cardiologist, however, wanted me back for repeat echos every six months. I still do not understand that. I could see every couple of years (which I have seen as the recommended testing interval for severe aortic stenosis), but not every six months. I assumed he must have a yacht he was paying for, and didn’t go back.

            Perhaps if I had been on some kind of regular check-up program, something would have appeared to give me advance warning. As I look back, I was going downhill through most of 2001. As time when on, I became more short of breath. I tired easily. I never felt chest pain of any kind; I just wanted to sit down to catch my breath. I was involved in painting the church here in April, 2001, and in July we roofed the house I live in.

            Then in the fall I got sick. The general practitioner we go to, a really nice and friendly doctor, diagnosed my difficulty breathing as bronchitis, and prescribed an antibiotic. One week later I was back in his office, and he diagnosed pneumonia, and prescribed a different antibiotic. This time he took an X-ray, and pointed to an area of my lungs as full of infection. One week later, he prescribed an inhaler, and said I should go to the hospital emergency room for a breathing treatment.

            By now, sleeping at night was very difficult. Every time I lay down I started coughing. In the morning I would have all I could do to breathe if I sat leaning just a little forward. During the day breathing got much easier, and then in the evening more difficult again. I finally decided that Monday morning I would go the emergency room for that breathing treatment, if I didn’t get better. I would take care of the Sunday morning church service and then go. But Saturday evening, we had a progressive dinner with church members, and they compelled me to enter the hospital that night. So I went for my “breathing treatment.” One of the first things they did for me at the emergency room was to send me for an X-ray. The emergency room doctor pointed to an X-ray that looked identical to the one my GP had shown me, and said, “That’s fluid in your lungs.” He explained that I had congestive heart failure, and had me see a lung doctor. I told him I had trouble breathing, and it was easiest if I was leaning forward a little. He said that is orthopneumy. I was impressed; if he had a name for my condition, he must have diagnosed it correctly.

            Of course, they admitted me to the hospital, and did various tests over the next few days to determine for sure that the cause of the fluid in my lungs was my heart. It was surprisingly painless when the lung doctor removed 1500 cc of fluid from my chest cavity with a needle through my back. Once they determined that the heart was responsible, I was scheduled for a catheterization at McLaren Hospital in Flint, Michigan, and sent home.

            This was definitely a low point. I was fairly certain that I would be having heart surgery, and that the sooner I had it the better, and yet they sent me home. I went home on a Wednesday, and wasn’t scheduled for catheterization until the following Tuesday. Would I live that long? Perhaps it is a test; if I do live that long, then they’ll do surgery; if not..... I made it to the catheterization, and as I had hoped, they admitted me to the hospital and scheduled surgery for Friday. They told me that my aortic valve, which had always been bicuspid, had calcified, and only opened “a pinprick”; it should be replaced with a mechanical valve. But in spite of that news, I felt better, since the solution was just a few days away.

            Perhaps because of that good news, perhaps because the diuretics had taken much of the fluid out of my system, I was ravishingly hungry. I hold my nurse, Maggie, in fond memory, since she brought me food, up to seven trays a day until surgery. I know it was only hospital food, but I felt like I was starving! On the morning of surgery, I felt better than anyone else involved, for I knew that that day would be the easiest in my life. The surgeon would have to work hard, my family would be worrying, but I would be sleeping through the whole thing. All four of my children were there with my wife in the waiting room, along with neighboring clergy.

            Recovery from the surgery is, of course, a blur. I remember that as soon as I became conscious of a tube, they took it out of me. I was overwhelmed with the idea that I shouldn’t feel any pain when I had visitors, so my memory (and theirs) is of me trying to figure out how to make the morphine button work. The treasurer of my congregation was there to hand me my glasses so that I could distinguish one blur from another. Sitting up in bed was the most painful part. Getting up to walk around the halls the second day after surgery was easy.

            On the day I was to go home from the hospital, I had some extra time waiting for my wife to pick me up, so I received permission from my nurse to walk the length of the hospital and get a new clergy badge made up. I made the whole trip there and back walking on my own. Then, when my wife arrived, I was placed in a wheelchair for the short trip out to the car. I’m sure this is standard operating procedure. Once home we had prescriptions to fill, four of them. It took me a half hour to sort through the three names for each medicine: the one the doctor had said (Coumadin), the name on the pill bottle (Warfarin), and the one that made sense to me (thins the blood).

            It’s now been four months since my surgery, and I can probably do just about anything I would want to do, except that I can’t do it with confidence. When I came home from the hospital, I had been told not to lift more than ten pounds. I found that opening a pill bottle was more than ten pounds. Although I did cheat on some of my restrictions, I also did a lot of sitting around, and a lot of sleeping.

            My first visit to the cardiologist after surgery was a very stressful day. I had been to see the surgeon at three weeks after surgery, and he had cut me loose, turning me over to the cardiologist. The cardiologist who had seen me in the hospital was an associate of the cardiologist I had seen years earlier, and I gave him a try. He did my catheterization, and so I went to see him a week after seeing the surgeon. The nurse who visited me at home to help me get started on the coumadin had also cut me loose, so I was pretty much on my own. I had to have my GP order blood tests to check the INR. So when I went to see the cardiologist, I knew it was time to have my blood checked. After a long wait, after a surprise EKG that I wasn’t expecting and for which there was no explanation, the cardiologist finally found my room. No blood test, they don’t do that, but here are some more prescriptions. By then I was down to only coumadin, and now he wanted me to take more medications! That made no sense, since I was feeling fine.

            I spent more time that day going to the hospital for a blood test, and then waiting around afterwards to find out the INR. At the latest, I learned during the second week home from the hospital that I had to take charge of my coumadin levels if I wanted to stay regulated. One doctor had advised me to take enough coumadin to put me almost at 4.0 when the doctor wanted me at 2.5.

            Perhaps it was because of that long day at the cardiologist’s and then at the hospital for the blood test that I started in on arrhythmias two days later. My first indication was dizziness to the point I thought I would pass out. I happened to be driving at the time, but fortunately on rather deserted country roads. I made it home somehow, and wondered what was going to happen. I had started rehab a week earlier, and when I went in the next morning, a Friday, the nurses wouldn’t let me do much because I was having such an erratic heart rate. They sent me for yet another blood test (I had just started the pinprick tests for coumadin and thought I was done filling test tubes), and I was also scheduled for an echo and a Holter monitor on Monday.

            So, those tests were out of the way and I went on with my life, learning from experience that the arrhythmia and tachycardia did go away by themselves, only to come back by themselves. “What were the results of my tests?” I was asked. My answer was that they must have shown nothing, since the cardiologist hadn’t informed me. Three weeks after the tests, at the urging of the rehab nurses, I stopped at the doctor’s office to see if there were any results. You can’t call the office, since they have the most complicated answering machine in existence; no matter what choice you make, you don’t get to talk to a real person. The nurse pulled my file, and showed me the results of my test. She claimed it had taken nine days for the hospital, a half-mile away, to get them the results, and they hadn’t let me know in the meantime because the cardiologist had been on vacation. The recommendation from the cardiologist which they hadn’t bothered to let me know was to have a TEE and to start amiodarone.

            I saw no need for yet another echo, but the medicine sounded like what I needed, so I started the amiodarone. It worked almost immediately! I started taking it on a Friday, and what a relief it was to be free of arrhythmia! However, I was somewhat concerned about all the side effects listed on the information page provided by the pharmacy. On the following Tuesday, I went to the dentist office where my wife is a hygienist and read the PDR pages on amiodarone. I felt like I had minutes to live! Up to a third of those taking amiodarone have side effects, which include nausea, blindness, toxicity to the lungs, etc. I also learned that amiodarone doubles the effectiveness of coumadin, a fact the cardiologist also had neglected to tell me. I cut my amiodarone dosage from 600 mg to 400 mg immediately, but the arrhythmias soon came back. I cut my coumadin dosage as well, but not near enough. At my next test I was 4.5. I had been told that the scale for the INR was from 1.0-4.0, so I thought I was off the scale! (I’m still not 100% clear on this point; I’ve been as high as 4.9, while some on this site have been to 11. It has been explained to me that people on coumadin need to be between 1.0 and 4.0, but the scale goes as high as need be.)

            My INR bounced around for weeks between way too high and way too low, first as I tried to adjust to being on the amiodarone, then as I tried to adjust to being off the amiodarone. I switched to magnesium, which seems to work just as well as amiodarone (most of the time), but with much less side effects. I dumped that cardiologist, and found another whom I’ve only seen once; so far so good.

            I finished the six weeks of cardiac rehab Phase II, and I highly recommend it to everyone! All the other people there had had plugged arteries, but they understood the chest cavity surgery. The nurses who run the rehab in my area are top of the line for friendliness and for caring. For the friendship involved, I’d love to go back for Phase III, but I’ve got a treadmill at home.