Perspective Chapter: Complication Using TAVR – A Patient

Abstract

This is the story about a person now in his 80s. He was born with a congenital aortic valve defect. Over his lifetime, the diagnosis and treatment of heart disease improved dramatically. Recently, the author corresponded with a number of patients undergoing heart valve replacements today and found all to be concerned about how long they would live and complications they would have with a replacement valve. The author’s experiences should help put valve replacement recipients’ minds at ease and help physicians address their patients worries and concerns. He describes procedures from the patient’s perspective for implanting a pacemaker, getting an ablation, and being evaluated for a TAVR. The author is living in the third year with his replacement valve. He is on his 40th year with a pacemaker. He found modern medicine and physicians to be miraculous in many ways and is grateful for the added years given to his life.

1. Introduction

Recently, I corresponded with a 71-year-old physician who had just received a replacement aortic valve using a Transaortic Valve Replacement (TAVR) procedure. Instead of being happy for a successful procedure, the physician complained about the procedure. First, he complained about the cost – that he estimated at about $140,000, even though his procedure was fully covered by his insurance. He said that $140 K could treat a lot of people in a third world country for a lot of different medical conditions. He added, “I feel guilty having the money spent on me when so many others are going without medical attention.” A part of me admires his desire to help others. However, another part of me feels his reasoning was a little like my mother telling me when I was a child to “Eat your peas. There are children starving in China.” Even as a child, I reasoned to myself that eating my peas, or not eating my peas, would not affect starving children in China. My older brother and I finally confronted our mother on her peas-exhortation, and she soon quit with the message. Had the complaining physician declined the TAVR procedure, I doubt it would have resulted in any more patients being treated in a third world country: at least not directly.

Second, the complaining physician said, “I do not expect that a new valve will extend my life more than three to six months.” He made this inaccurate and rather startling statement even though he had no other underlying health concerns or conditions. Obviously, the cardiovascular system was not his specialty. A recent aortic valve durability study showed valves doing well after 8 years in younger patients (under 65 years of age), regardless of whether the valve was a surgical aortic valve replacement (SAVR) or a Transaortic Valve Implantation (TAVI – also referred to as a TAVR) [1]. This is an important finding for older folk because replacement valves tend to last longer in older patients than in younger patients.

I was corresponding with this physician because I, also, had been evaluated for an aortic heart valve replacement using a TAVR procedure. I wrote about my aortic valve experience in a popular medical journal, and as a result of that article, I have corresponded with several TAVR recipients or prospective recipients. All of us seem to have some concern about how long we might live with a replacement valve. The good news is that TAVR aortic valves are made from the same biological tissue as surgically replaced valves and should last about as long as a Surgical Aortic Valve Replacement (SAVR). Just this past week I talked with a 90-year-old retired physician whose 94-year-old sister had been living with a SAVR for 25 years – the same valve for all 25 years, and she still was having no issues with her valve.

A few months ago, I corresponded via email with a retired military officer who was soon to have a replacement aortic valve at age 69. He, too, was worried about how long his valve would last. He was scheduled to have a TAVR procedure, and he asked me about how long a replacement valve would last. He was hoping to live into his 90s. He had been reading on the internet and had come to believe that replacement valves do not last too long. He asked me about what might happen if he needed a new valve in about 10 years. I reminded him that I was not a physician but that I had been reading about new procedures involving “re-valving” or “valve in valve” procedures. He then wanted to know what would be done if he had a valve-in-valve procedure around age 80 but then needed a third replacement valve at around age 90. I discussed the durability of today’s valves, and that is where our correspondence ended. However, I was impressed with his optimism and zeal for a longer life.

About a year ago, I corresponded via email with a psychologist whose 59-year-old brother was scheduled for an aortic valve replacement using the TAVR procedure. Primarily, she was concerned about the safety of the procedure, and her brother primarily was concerned about how much shorter his life would be with a replacement aortic valve. I explained to her the process a TAVR patient would go through as I understood it, and that seemed to put her mind at ease. In follow-up correspondence, she described how well her brother was doing and that he was back at work full-time following his procedure.

I have come to believe physicians should avoid discussing the length of time someone might live when talking with patients about a valve replacement. Instead, I believe it is better to discuss how much improved valves are and how durable they are. For example, I was 80 years old when I was being evaluated to determine if I was a viable candidate for a replacement valve. Since the average longevity for males in the U.S. is about 78 years of age (or less), why discuss with me how much longer I might live with or without the need for a replacement valve? I had already passed the average age for longevity. The good news is that there have been tremendous advances over the past 50 years in the treatment of diseased aortic heart valves. That’s the story I believe prospective heart valve recipients need to hear. If patients are not reassured about the high quality of today’s valves, then we may tend to start looking for ourselves on the internet about longevity with replacement valves, and we may be subject to gaining a lot of misinformation and outdated information. Bad information can lead to poor decisions regarding our health and cause us unnecessary stress. Additionally, it stands to reason that physicians will be better at their treatment of patients if they have a better understanding of what the patient is going through. We’ve all heard stories about physicians who were ill and reported they were better at their profession after their illness and recovery – after they had gone through the experience of being a patient. Physicians are used to being in control, and you lose most of your control when you are a patient for a replacement heart valve. My intent in writing this chapter is to show a little bit about what it means to be a patient based on what I went through with my aortic heart valve. In Section 2, I share my early experiences with my congenital heart valve defect. In section three, I share my experiences with pacemakers and my evaluation for a valve replacement. Also, I share the possible kinds of issues facing any heart valve recipient.

The process of replacing someone’s aortic heart valve always will have worries and possible complications. My story about the complications I went through with my aortic heart valve follows.

2. My aortic heart valve history (the first four decades)

I was born in 1940 with an undiagnosed aortic heart valve defect. When I was 4 years old, my granddad gave me a two-wheeler bicycle. I considered myself to be a pretty good athlete based on my interactions with my buddies in the neighborhood, but I quickly noticed that I did not have the stamina to ride my bike up hills. However, all the other kids in the neighborhood had no trouble riding up hills. I knew something was wrong, but being a little kid, I thought very little about it.

In 1951, General Dwight David Eisenhower (Ike) was elected President of the United States. I was 10 years old. Ike served two terms as president from 1953 until 1961. My grandfather was a devout supporter of Ike, and his devotion to Ike caused me to pay special attention to Ike’s health, especially from 1955 until Ike’s death in 1969. In 1955, Ike had a massive heart attack. In the 1950s and 1960s, there was little being done for cardiac infarctions. Nevertheless, a legendary and highly respected physician by the name of Paul Dudley White was rushed to Ike’s side [2]. White was a pioneering cardiologist and advocate for preventive medicine. Ike’s cardiac team prescribed long term use of anti-coagulants (non-traditional treatment at the time). In addition, White prescribed light exercise, cessation of Ike’s heavy smoking, and a revised diet. White remained Ike’s cardiologist, and over the remainder of his life, Ike had at least four other myocardial infarctions, a stroke in 1957, and 14 other cardiac arrests. Ike’s case is an amazing example of a strong-willed leader who benefited from having complete trust in his cardiologist. White successfully used his public forum as Ike’s cardiologist to educate the public about heart health. Little did I know at the time, but Paul Dudley White’s path and my path would 1 day cross.

Early in my freshman year in college, 1958, I decided to try out for the college’s freshman basketball team (I was 17 years old). In those days, freshmen were not allowed to join a varsity team. The physician conducting the physical was concerned about my heart and referred me to a heart specialist before he would approve me joining the team. The referral cardiologist listened for quite a while to my heart with his stethoscope and suggested it might be best if I did not play competitive sports. However, he wrote a permission slip for me to play if I felt strongly about it. He told me that I had a loud aortic valve murmur, but he could not tell what the cause might be. He felt it better not to stress my heart with the rigors of competitive basketball. I played college basketball for one semester and then dropped out. I would sometimes need to leave the court and throw up, and frequently I did not feel well after vigorous exercise.

Later in my freshman year in college, but now 18 years old, I had my tonsils removed. The physician performing the tonsillectomy also listened to my heart. He told me he had heard many heart murmurs in his career, and he felt certain I had a bicuspid valve. He told me I would not live much past my early 40s and that I should plan my life accordingly. Today, his warning might seem overly harsh and misguided, but remember, that was 1959. The first mechanical replacement valves did not take place until the 1960s [3]. The physician was advising me based on what treatments were known to him to be commercially available at the time.

Growing up, our family was attended by a General Practitioner (GP), but that physician never mentioned a heart murmur to my parents or to me. I asked him about my heart murmur when I was 22 years old, and he told me lots of people have heart murmurs and he did not think it was overly significant. A couple of years later I saw another GP, and he referred me to a cardiologist who listened intently to my murmur and suggested I just wait and see what might happen and recommended I take no further action for the time being. However, occasionally I would have angina or angina-like discomfort, and that discomfort was always worrisome to me.

In 1967, now 26 years old, I moved from the West Coast to the East Coast and started being treated by an Internist specializing in the treatment of heart disease. The internist sent me to a local clinic for an x-ray in the hope that it might show calcification on the aortic valve if such calcification in fact existed. The results of the x-ray did not clarify much about my condition. The x-ray showed extensive calcification in the heart, but it could not be determined exactly where it existed in my cardiovascular system. However, the radiologist believed that the calcification likely was in the aortic valve area. Remember, MRIs and CT scans were not yet in use at that time [4].

I told my internist about my chest discomfort, and he prescribed nitroglycerin sublingual tablets to ease my discomfort. He told me to always carry the tablets with me and to dissolve one under my tongue whenever I had angina discomfort. I put a couple of the tablets in a small envelope and carried them with me in my wallet for several months. I used them a couple of times and did not like the way I felt when using the drug, and besides, I did not notice any improvement in my angina. After a couple of years, my internist told me it would no longer be necessary to use the nitroglycerin tablets.

When I was 28 years old, my internist sent me to a major hospital (near where I was living) for a heart catheterization. That procedure did not go well. I was taking a full aspirin at the time (on a daily basis) for my migraine headaches and because my internist thought that aspirin also might be helpful for my heart. The hospital did not give me any instructions about ceasing the aspirin before the catheterization. In fact, I had heard that a possible side effect of the catheterization could be a blood clot. So, I mistakenly took two full aspirins on the morning of the procedure. The two physicians performing the procedure gave me blood thinner, and after they wheeled me back to my room, I internally bled an estimated two pints of blood into my groin and leg. The hematoma on my groin, and the black and blue discoloration of my entire leg did not clear up completely for about 5 months. The good news for me, however, was that the cardiologists performing the procedure did not see any need for further medical intervention involving my heart condition.

When I was 30 years old, my Internist referred me to another Cardiologist at a different major university hospital in the area where I was living. The Cardiologist performed a heart catheterization (my second). The next morning after the catheterization, the Cardiologist asked me if he could present my case at his rounds, and I agreed. Around 11 a.m. I was wheeled out of my hospital room, down a corridor and through a door leading directly onto the stage of an auditorium with about 300 people in attendance. The cardiologist was presenting data from my catheterization to the audience when I arrived in the theater. There were two other physicians sitting in chairs on stage, but they were located off to the side of the stage. One of the two other physicians appeared noticeably older than the physician sitting beside him on stage. Clearly, the cardiologist who performed my catheterization was center-stage and appeared to be fully in command of the audience. I was very surprised. I had expected “rounds” to mean I might meet and discuss how I was feeling with maybe a handful of young physicians. The cardiologist briefly introduced me to the audience, and then he continued with his explanation of the blood pressures in my heart chambers and connecting blood vessels as determined by the catheterization.

At first, he spoke about how he had found no blockages in the arteries feeding my heart muscle, and that made me feel pretty good. He then began to discuss the calcification he had found on the aortic valve. Again, reviewing the pressure numbers from the catheterization, he said that he was recommending that I immediately be scheduled for a replacement valve. Remember, I’m 30 years old and being told in front of an audience of 300 people that I need open heart surgery. My jaw dropped. With great aplomb and apparent satisfaction with his diagnosis, the cardiologist took a seat in an empty chair next to the older physician still sitting onstage. The older physician then rose to address the audience.

His comments were brief. He said, and I will never forget his words, “This patient may surprise you. I do not recommend surgery at this time.” No sooner had he uttered that statement than all hell broke loose on the stage and in the audience. Apparently, it is rare for one physician to contradict another physician, and especially in front of an audience of 300. There were murmurings and wild conversations throughout the audience. The cardiologist who had been presenting my case jumped up and began yelling about how he had been misunderstood. Someone, who I did not see, walked up being me and whispered in my ear, “You listen to Dr. White, he’s God to you.” Bingo! All of a sudden, it became clear to me that the older physician on stage was none other than Paul Dudley White, the physician who had attended President Eisenhower. The cardiologist who had performed my catheterization was jumping around on stage like a wild man and ordered that I be removed from the stage and taken back to my room immediately. A nurse quickly pushed me in my wheelchair out the backdoor of the stage. I do not know how ordered was restored, but it was a wild time for all involved. I doubt there has been anything like it since.

The cardiologist who performed my catheterization visited me in my room later that day. He repeated to me that I needed a replacement value urgently, and that I should not listen to Dr. White because he was old and did not understand modern medicine. I told the cardiologist that I had decided to postpone the heart valve replacement, and I went home the next morning. The cardiologist wrote a letter to my internist and told him I needed valve replacement surgery and told him I should get a Multigated Acquisition Scan (MUGA) every 3 months to check for changes in my ejection fraction or to check for any other changes in the heart functions.

Dr. White’s advice not to rush into surgery clearly influenced my decision to put off surgery. Also, there were a couple of other reasons that informed my decision not to replace my aortic valve at that time. One, I was working for a publishing organization, and while we did not publish medical journals, we were the recipients of a regular medical journal that I read religiously when it crossed my desk. The journal frequently contained articles about heart valve surgery with pictures of failed “ball-cage” or “ball in cage” valves removed from cadavers. Frequently, a metal prong from the cage was broken, or in some instances the ball was missing. I could see why it would not be a good outcome for a piece of metal to be loose inside the cardiovascular system let alone for the ball to break free and travel through an artery until it became stuck. Surgical replacement using tissue valves had been introduced at this time, but they would not last very long primarily because it was not known how to adequately preserve the tissue valves. Another reason I decided to delay surgery was that I had read an article written by a surgeon who said to “remember that absent strongly compelling evidence to the contrary, the best heart valve is the one you are born with.” In any event, I knew about all the shortcomings of replacement valves at that time and was both relieved by Dr. White’s advice and most willing to follow his advice.

My decision to delay surgery was made overnight as I lay on my hospital bed. However, from that time forward I thought of my life as being pre-and-post heart valve surgery. I was convinced that I would need surgery at some point and that that point might not be too far away. Assuming the likelihood of surgery not being too far off impacted all decisions about my personal life for the rest of my life.

In the early 1970s, I began my MUGA scans every 3 months. These scans required the injection into a vein in my arm of a radioactive chemical called technetium-99 m-pertechnetate (Tc-99 m). I would lie on my back and a special camera would take pictures of my aortic valve as the blood pumped through it. At the end of the exam table were bicycle pedals I could pump to elevate my heart rate. For some exams I pumped the pedals and other times I did not [5].

My ejection fraction (EF) was always around 60%. This meant that 60% of the blood in my left ventricle would pump out each time my heart took a beat. A normal heart will have an ejection fraction of about 50–75%. This meant that my EF was perfectly normal. There was one anomaly: when I pumped the bike pedals and my heart rate increased, my EF did not increase. The only way my heart could deliver more blood when needed was by pumping faster. My EF never rose above 60%. For a normal heart, the EF goes up with increased heart rate. However, this was not a factor in determining whether or not to replace the valve. The MUGA scan every 3 months went on for several years with no change in my EF, and my internist eventually decided to scan every 6 months, and the six-month scans went on for several years with no change in my EF. Eventually, my internist agreed with Dr. White and ceased all scans. After every scan I was told to go home and drink plenty of water to flush the radiotracer out of my system; and I did as I was directed.

In case you were wondering, the echocardiogram (echo) was just beginning to be used in the early 1970s [6]. An echocardiogram is totally noninvasive: there is no radionuclide injected into the blood. In the early 1970s, the pictures from an echo were not as clear as they are today. In addition, the results from an echo were not as accurate as the results from a MUGA especially involving EF data. Use of the echo has grown in popularity, and over seven million echocardiograms are now performed annually in North America. However, the MUGA scan is still widely used today as well.

3. Pacemakers to the rescue

When I was 43 years old, I had some periods of time when I just did not feel well, and I felt like my heart was skipping beats at times and getting extra beats at other times. The results from an electrocardiogram caused my internist to outfit me with a Holter monitor for 24 hours. The results of the Holter monitor test showed I had developed intermittent left bundle branch block. Although it was impossible to tell for sure what was causing the left branch block, it seemed very likely that calcification in the aortic valve was pressing on the nerve going to my left ventricle and causing the nerve to periodically misfire. My internist referred me to a major hospital in the area for evaluation for a pacemaker. The cardiologist at the hospital insisted I needed both a valve replacement and a pacemaker. When he saw that I was not willing to undergo valve replacement, he recommended a pacemaker be implanted but insisted I would need a replacement valve within 2 years at the longest.

I got my first pacemaker when I was 44 years old. It was implanted by a semi-retired surgeon who told me he got too tired standing during open heart surgeries but that implanting pacemakers was perfect for him because he did not need to stand very long during the procedure. I laid on the operating table and he gave me an injection of pain killer in my upper right chest. Then he entered the superior vena cava vein going from my right arm into my heart, and he strung the pacemaker leads through the vein into my heart. Once the wires were in place, he made an incision on my chest, forced open a “pocket” under my skin, connected the pacemaker wires, and slid the pacemaker into the pocket. Final steps in the procedure were the stitches and placement of a bandage over the wound, and I was sent home the next day.

The pacemaker was set at 55 beats per minute, and this rate was to cause me problems for many years to come. I found out many years later that the natural pace of my heart was 57 beats per minute. However, the pacemaker setting proved to be too close to my natural pace. Pacemakers are designed to wait and see if the heart will beat on its own. If the heart does not beat, then the pacer sends a signal for the heart to beat. My pacer was a dual pacer, so that the pacer would send a signal both to the top of the heart and to the middle (and lower sections) of the heart as needed. My upper sinus mode always worked well, but the signal had difficulty going through to the lower chambers of the heart. The heart has a sinus node both at the top and middle of the heart, and sometimes my pacer would send a signal for the lower sections of my heart to beat just as the natural signal from my heart was sending a signal. Thus, I frequently got double beats in the lower sections of my heart. Remember, all of this is happening in a fraction of a second, because the average heart will naturally beat 50 or more times per minute. Getting my pacemaker settings in concert with my natural beat settings was an issue for my physicians starting with that first pacemaker.

A few days after getting my first pacemaker, I needed to fly on a business trip from the East Coast to the Mid-West. The first evening of my business trip, my right arm swelled up to about double size. I called my internist back on the East Coast, and he directed me to the Emergency Room (ER) of a hospital near me. Two ER physicians examined me and could not tell what was causing my arm to swell. Out of an abundance of caution, they put me on a mild dose of antibiotics and told me to see the surgeon who had implanted the pacemaker as soon as I returned home. Besides being swollen, my arm had a slightly reddish color to it, but I was not in any pain. Back home and during my visit to the surgeon, he quickly advised that the wires from my pacemaker into my heart had blocked the vein returning blood from my right arm to my heart. We decided to make no medical intervention, and after about 6 weeks, my cardiovascular system grew new veins around the blockage and my arm size and coloration returned to normal. You can still see a lot of “extra” veins in my right chest.

I had one other scare with my first pacemaker about 10 days after it had been implanted. I was attending a professional basketball game with my sons. We were watching the game when my name was announced over the loudspeaker system of the stadium saying I was to contact my pacemaker physician immediately. I went to the stadium office and called the physician at the hospital as directed. The physician told me they had been reviewing my pacemaker data and felt they had made some incorrect settings on the pacemaker and wanted me to come in right away so they could correct the settings. The next morning, they made a number of changes in the pacer parameters. My understanding was that they changed the time the pacemaker would wait to see if the heart was getting a natural signal to beat. I could not feel any difference. They left the pacemaker beats per minute at 55.

My first pacemaker was needed by my heart only intermittently and remained in place for about 16 years. By then, I had semiretired and was scheduled to take a vacation trip from the East Coast of the United States to Australia. Although the battery had some charge remaining, my internist felt it best to swap out the old pacemaker for a new one and not take any chances on a pacemaker failure being so far from home and in a foreign country. I got my second pacemaker when I was 59 years old. Apparently, I was becoming more dependent on the pacemaker, because my second pacemaker lasted less than 5 years.

When I was 62 years old, the internist who had been tending to my heart issues for 35 years, retired for health reasons. He was having a rough time with his hip replacement. His first hip replacement was recalled, and after his second surgery, he got an infection and had to have the second hip removed. He needed to be home in bed and on antibiotics for a month awaiting a third hip surgery. Interestingly enough, he told me before he retired that he would have been a better physician had he been a patient earlier in his life. He felt he had lost control over all of his medical care, and he did not like the feeling of losing control.

A friend recommended a cardiologist to me who was taking new patients. This gentleman made a strong effort to go over my heart valve history, and he was especially interested in any discomfort I might be having in my chest. I told him that occasionally I had angina-like discomfort when I exercised, especially when it was cold, and especially after I had been sitting at my desk at work for a long period of time and then walked several blocks to the subway to go home at night.

This new cardiologist ran a few tests in his office and told me I had a blocked artery in my heart. He showed me a picture from his in-office tests confirming the blockage. He said he could not be certain which artery was blocked, but he was scheduling me for a heart catheterization to determine how much blockage existed and where. He told me that most likely I would be needing bypass surgery. He, personally, did not perform catheterizations, but he recommended a colleague of his, and the next week, I was in the hospital with his colleague performing my third catheterization. The technician assisting in the procedure said to me after the procedure: “In my twenty years of medicine, I have never seen anyone with larger and more wide-open coronary arteries than yours. You will not be needing bypass surgery anytime soon if ever.” A few days later, back at my new cardiologist’s office, he said he had misread the test data. He said he did not know that the fraction of a second delay in the pacemaker sending a signal for the lower chambers of my heart to beat would cause the tests to be invalid. He apologized profusely for having me undergo a totally unnecessary catheterization. He unceremoniously dropped his office test results in the trash can next to his desk. He placed the catheterization results in my file as he explained that whatever chest dis-comfort I was having was not due to blocked arteries.

I received my third pacer when I was 64 years old. The placement of my third pacer did not go entirely as planned. I was not sedated for the procedure. The physician implanting the pacer and the technician assisting him started arguing about the size of the pocket and who would close my wound after the replacement pacer was in place. One of them pushed on the pacer when it was in my chest and the leads coming out of the pacer bent around the edge of the pacer. The technician stormed out of the procedure room and the physician closed the wound. Unfortunately, there was a significantly raised area around the pacer where the lead wire for the pacer was bent around the pacer and pushing up my skin above the pacer. The area became puffy in just a couple of days. My pacemaker physician had gone on vacation, and I was scheduled for a business trip from the East Coast to the West Coast. I consulted a different physician, and he believed the puffiness would eventually subside, and it did subside after several weeks. My third pacer lasted about 5 years.

I still have my third pacemaker in my right chest even though it is now inert, and the lead wires still push the skin up around the pacemaker. The reason for leaving the pacemaker in place is interesting. When I got my fourth pacer, I was 69 years old, and the leads to the old pacer were deteriorating. I was still semiretired and had moved from the East Coast back to the West Coast, and my new pacemaker cardiologist decided to put in a whole new pacer system on the left side of my chest – new pacemaker and new leads into the heart. He told me that one worry they always have when implanting pacemakers and wires is that an infection might occur on the pacemaker itself or on the wires. If he removed the old pacemaker on the right side at the same time he installed a new pacer system on the left side, and if I got an infection, he would not be able to tell whether the infection was on parts of the old wires still remaining in the right side of my chest, or if the infection was on the new system on the left side of my chest. Removing old wires, especially when they have been screwed into the heart muscle can be life threatening, and in cases like mine, the old pacer is usually removed, but the wires going into the heart are left in place. Hence, he made the very wise decision to leave the entire old system in place (pacer and wires) even though the old pacer was turned off when the new system was implanted.

The new pacemaker system on my left side required the new leads to go through the vein from my left arm into my heart. The procedure was similar to what I had gone through when I got my first pacer, it was just on the opposite side of my chest. The most significant difference was that this physician insisted upon me being under anesthesia for the procedure. Also, this was the first time I was told that I had become “pacemaker dependent.” I was told not to worry, however, because the pacemakers were space-age technology. I did not find the space-age language comforting given all the problems that can and had occurred in space. A couple of my friends asked if it was difficult for me to live with the knowledge that if my pacer stopped working, I would die in a matter of seconds. Those questions were not reassuring to me as well. In the long run, I just had to shut out of my mind any worry about whether a pacemaker might stop working.

As mentioned, I received my fourth pacer when I was 69 years old. However, my luck was improving regarding battery life. My new pacemaker physician, working with the pacemaker company representative, decided to set my beats per minute at 50 in order to try and eliminate my double beat problems. That adjustment did work for a number of years. My fourth pacer lasted for 7 years, and I received my fifth pacer when I was 75 years old. The double beat issue still was not a problem.

As mentioned, I had moved from the East Coast back to the West Coast, and my new cardiologist advised that in addition to my aorta issues, I had a prolapsed mitral valve. He explained that when someone, like me, has a large amount of blood flowing back into the left ventricle of the heart because the aorta valve does not close properly, that it puts pressure on the mitral valve and eventually may cause it to become prolapsed. He believed this was my situation. This is the first time I had been told I had a prolapsed mitral valve.

When I was 79 years old, I had an incident where I felt like I was going to pass out. The incident lasted for about 12 seconds. I saw my pacemaker physician a few days later, and fortunately, the newer pacemakers make a recording of any unusual disturbances in heart rhythm. This was not my first episode of feeling faint. I remember talking to a different physician years earlier about feeling faint, and he told me it was probably the pacer sending a wrong message to my heart. He told me to go into a limp position whenever I had that feeling, and I remember going limp on a few occasions in the past. The faint feeling always went away in a few seconds.

My pacemaker physician informed me that I had suffered a short run (14 seconds) of ventricular fibrillation (VF). He consulted with my cardiologist, and I checked into the hospital that night. The next morning, my pacemaker physician removed my fifth pacemaker and implanted a new combination pacemaker and defibrillator. I was informed that VF is a rapid life-threatening heart arrhythmia. It is sometimes referred to with a married male patient (like me), as “the widow maker.” It can be that serious because when the heart is in VF, it cannot pump blood throughout the body. Fortunately, all my runs of VF had been short lived and self-corrected. It is when the VF continues for more than a few seconds that it becomes most dangerous. With the new combination pacemaker and defibrillator, I am now protected against the “widow maker.”

While I was still 79 years old, I began having more extra beats and a return of the double beat problem – a worsening of a condition I had off and on since my early 40s. It was determined that I not only had extra beats but that I had atrial flutter as well. Atrial flutter occurs when the heart’s electrical system tells the heart to beat faster. My pacemaker physician, in consultation with my cardiologist, recommended I undergo an ablation using a radio frequency procedure to burn out the extra signals. The ablation procedure itself is amazing to me. I was treated by a physician who specialized in such procedures. Using a grid that overlays the heart, the physician was able to determine where in my heart the extra signals were originating. A Radio Frequency (RF) catheter was inserted through my right groin femoral artery and into my heart. In my case, it turned out that the extra beats were coming from one spot in the annulus of the right atrium. The signal would originate in a nerve in the annulus and then travel in a circle around the annulus and cause the same originating nerve to fire again in a continuous loop. The physician burned or ablated the nerve where the extra beat was originating. In addition, he ablated another spot on the annulus just in case the originating nerve was not completely ablated. He did this to prevent any unwanted electrical signal from going in a circle and starting the extra beats to repeat as in the past. As it turned out, this was a smart move by the physician because subsequent tests showed the original unwanted firing of the nerve was still taking place on an intermittent basis. Now, however, the signal was blocked by the second ablation, and the repeated beats ceased. I still get an occasional extra beat, but nothing like before. Also, the physician was able to locate the source of the atrial flutter, my right atrium, and ablate the offending nerve. The atrial flutter has not returned.

My pacemaker physician set my new pacer at 70 beats per minute (bpm). This faster bpm stopped the double beat issue, and any serious problem with double beats has gone away. At first, I felt like my heart was racing. After all, I had been set at 50 bpm for many years, and I could tell the difference. My physician said to try the rate of 70 bpm for 3 months and we would go from there. For a while, I felt like my heart was working overtime and I seemed more tired. By the time 3 months rolled around, I was feeling better, and the double beats had largely subsided. Only occasionally now do I get extra beats that are bothersome. My bpm remains at 70.

4. The right time for a heart valve replacement

While still 79 years old, my cardiologist was beginning to be concerned that the time was getting right for a replacement aortic valve. I was having more angina-like discomfort in my chest when I went for my daily walks. The echocardiogram (echo) showed that my ejection fraction had dropped from its previous reading of 55 to 45. Also, the valve opening had narrowed, due to calcification, to a dangerously narrow number using echo readings. Finally, the valve had become stenotic, that is, it was not opening and closing as it had previously. However, to my way of thinking, my cardiologist seemed slow to pursue valve replacement. He put me through a whole series of tests, including my fifth catheterization (not counting the ablation). In a discussion with him about the procedure, he explained that a team of three physicians, including himself, had been put together to access my situation. All three physicians had concerns about how successful an aortic heart valve procedure might be in my case. Some of the following parts of my story that follows at times involve my assumptions and projections about what happened, so none of the physicians involved can be held to account exactly for my views as stated below.

The surgeon on the team had determined that surgery was not an option. I met with her, and I do not recall her using the term “inoperable,” but someone may have used it at least once. In any event, my understanding was that she ruled out surgery due to the extensive calcification of the valve. This is concerning because a part of her role is to be present during the TAVR procedure in case something goes wrong, and it becomes necessary to move me from the procedure room directly into the operating room. So now I’m uncomfortable knowing that if something goes wrong during my TAVR procedure that surgery is not a promising backup plan. However, the surgeon did agree that a TAVR procedure was the best option for treating my condition. Not doing anything about the valve was not a good option either. One physician estimated I had only 6 months to a year to live given the condition of my valve and the deteriorating condition of my heart as shown in the echo results.

In addition to the team’s concern about surgery not being an option, the team had five other concerns about implanting a new aortic valve in my heart using the TAVR procedure. Any one of the five would be a good reason for not performing the procedure, so I’ll discuss each of the five and explain why each was problematic in terms of a favorable outcome.

4.1 The size of my existing aortic valve was unusually large

My team planned to use a replacement valve they regularly used for such procedures, but the largest valve made by their preferred maker of TAVR valves was 20 percent smaller than my valve opening (i.e., the largest valve was only 80 percent in size of what they preferred). Using the right sized valve is critically important to the success of the procedure. If the replacement valve is too large for the patient’s aortic valve opening, it could severely damage the heart muscle and even cause death right there on the table. If the replacement valve is too small (my case), it could slide out of position and have a fatal outcome.

A process called hemodynamics [7] helps hold the stent supporting the valve in place in the aorta. As a normal heart pumps blood out through the aortic valve, it does so with a fair degree of velocity and force, but there is not a lot of pressure on the valve itself because the cusps are open, and the blood is flowing right through the open valve. Likewise, when the valve closes, there is not a lot of backflow pressure because the backflow of blood is not being pumped, it is simply stopped from flowing back into the heart. Still, replacement valve slippage is a concern.

Also, a process known as reendothelialization (where cells lining the blood vessels grow in and around the stent) helps hold the valve in place [8]. Finally, the metal valve frame or stent will be pressing out against the old tissue valve which is squeezed between the stent or frame of the valve and the lining of the aorta, and this will help hold the valve in place. Despite all this, a valve can slip out of place, and therefore, proper size is important. The nearest thing I can compare the importance of valve size to is clothing, a new pair of shoes for example. Even when we buy “our size” in a different shoe it can be too long, or too short, or too wide, or too narrow, or have the wrong arch support or just not feel right. For these reasons, we usually try on a new pair of shoes before we buy them to make sure they are the right size. The same goes for a pair of gloves and other clothing items. The outcome of an improperly sized replacement heart valve may come with more deadly consequences. During a catheterization procedure, physicians carefully measure the size of the old valve opening in choosing the proper replacement size. Interestingly, the replacement valves are not made to order. They are premade in a very limited number of sizes and are either available from the maker or stocked in the TAVR Centers where implantation will be taking place.

My team knew that another maker of aortic heart valves happened to make a larger size valve that would be much better for my situation. The team contacted the maker of that replacement heart valve and described my case to the maker and explained why the team wanted to implant the larger valve in my heart. The maker of the larger valve declined to allow their valve to be placed in my heart fearing that my situation was too dangerous for a replacement valve to be successful.

If the team was to go ahead and attempt my aortic valve replacement procedure, they would need to use a valve they regularly used and had access to even if the valve was too small. There were a couple of advantages in the team’s favor. The valve they usually used had a section in the middle of the frame that allowed for expansion of the valve using a balloon catheter. In other words, once the valve had been deployed in my heart, they could then insert a balloon catheter into the valve and expand it outwards in the middle of the valve. However, they could not make up being 20 percent too small. In addition, the valve comes with a “skirt” designed to expand and lessen blood around the outside of the frame. The “skirt” could prove helpful should they go ahead with the procedure. Finally, the team reasoned that the extensive calcification would likely hold the valve in place even if all else failed.

4.2 My aortic valve had an unusual shape prone to leakage

As opposed to being round or somewhat oval shaped, like most aorta valves, my valve is elongated and shaped more like a football. My team was worried that if they put a round replacement valve inside an elongated space that there would be an unacceptable amount of blood leaking back into the heart around the frame of the valve. This is commonly referred to as regurgitation or aortic insufficiency (AI). My team did not want to operate and create a new major issue due to an unacceptable amount of blood leaking back into the heart with each heartbeat.

4.3 The cusps of my valve were deformed

The newer and higher quality echo device at the hospital where my cardiologist performed my last echocardiogram to help determine if I was a candidate for a TAVR for my aorta valve, finally showed the deformity of my valve from birth. Typically, the aorta valve has three cusps that open and close with each heartbeat. I only had two cusps. The third cusp was missing. I was not a classic bicuspid valve case. In addition, my two cusps were fused together, so I really had only one double-sized cusp that was opening and closing with each heartbeat. Instead of the valve opening and closing normally, it was moving more like a small door opening and closing in a large door frame. The team was concerned about how compliant the large and fused cusps might be when the replacement valve was deployed.

4.4 My aortic valve had extensive calcification

My team was especially concerned about how pliant the calcification in the aortic valve would be. They were worried that if it was too hard that it might damage the heart muscle when the replacement valve was deployed. However, as previously mentioned, the team thought the calcification might help hold the undersized replacement valve in place.

4.5 My aortic valve had a piece of heart muscle blocking the implantation of a replacement valve

The last echo showed a piece of heart tissue protruding into the aorta valve right where the replacement valve would be placed. Proper positioning of the replacement valve is critical for success. You do not want it too far inside the left ventricle, and you do not want it too far into the aorta itself. In fact, during the TAVR replacement procedure, the team has to agree that the valve is properly placed, and they have to agree to implant it. Unfortunately, the piece of tissue was right in the way. The replacement valve can be moved slightly, but only slightly, and there was no way to avoid the extra tissue. It might distort the frame of the valve, or it might push into the heart muscle and cause issues. The team would have to put the replacement valve over the extra tissue and hope for the best should they decide to go ahead with the procedure.

Given all the above: my unusually large aortic valve opening; my football shaped valve; my missing cusp and my fused cusps; my extensively calcified valve; and the piece of tissue blocking implantation of a replacement valve, it was fully understandable that my team was having second thoughts about replacing my valve. Obviously, they did not want a patient to die on the table, nor would they want to be accused of being reckless in going ahead with a risky procedure. However, I did not appear to have too long to live. As mentioned earlier, my EF was dropping, and it had dropped from its long held 55–45%. the opening area of the valve for the blood to flow out of the heart was narrowing to a critical point (due to calcification), and the valve had become stenotic (described to me as a lack of movement due to calcification forming around the cusp). The risks against a successful procedure were significant, and the risks were discussed with me. I could live out my life as best I could, maybe even have a few years if lucky, or I could have a replacement valve, maybe live many more years, and maybe live a much more satisfying life than otherwise would be the case (i.e., feel better and be more active). The choice was mine. The team was willing to go ahead if I wanted them to do so. I chose a replacement valve, and I was assigned to a scheduling nurse to arrange for the procedure. The scheduling nurse had to reserve the procedure room, schedule all three physicians on my team to be there, of course get me there, and schedule the assistants and assure all necessary supplies are in place, including some replacement valves, and schedule the operating room in case I needed to be moved from the procedure room into surgery. She was able to set it all up for a procedure date in about 4 weeks.

5. Do not forget the dental work

Unfortunately, on the day of the scheduled procedure, I woke up with a significant tooth ache. I tried to call the scheduling nurse and my doctor for guidance, but no one was answering their phone. I went to the hospital and went through the preparatory steps, but the procedure wound up being canceled. I was told it would not be a good idea to proceed if I had an infected tooth and there was any danger of the infection spreading to my new valve. I was told to get my dental work done and then reschedule. Interestingly enough, I began to feel like I had a little more energy. I even commented to my wife, “maybe I don’t really need a replacement valve after all.” I would later find out why I was having a little more energy, and I will report on that matter in a section below.

There was another issue of concern. My procedure was scheduled during the height of the COVID-19 pandemic. My wife could not accompany me to the procedure. She dropped me off in front of the hospital and wished me luck. It is difficult to imagine how stressful a procedure like a heart valve replacement is for loved ones. All medical members need to be mindful to stay in touch with the listed contact for the patient.

I thought my teeth were in good shape. I regularly visited my dentist, had my teeth cleaned, and had dental work completed as necessary. It turned out that the tooth that was aching on my scheduled procedure day was cracked down to the root and needed to be extracted. That was followed up with an implant and crown. Additionally, I had one other tooth that needed a root canal; another tooth needed a bone graft, and one other tooth needed to be re-filled because the previous filling was leaking. All the dental work took about 3 months, and the scheduling nurse was not able to get me rescheduled for another couple of months. Five months after my original procedure date, I again reported to the hospital for TAVR.

6. The actual procedure

The actual procedure started out in an interesting fashion as I was lying on the procedure table. One technician set up the echo machine and flashed an image of my aortic valve on a large elevated screen. The first thing that the technician and I both noticed was that a huge section of my aortic valve had torn loose and was being held by just a thread of tissue. On the echo, the large piece of torn valve looked like a flag flapping in a hurricane. It moved out straight with every heartbeat and appeared as though it could tear loose at any moment. Who knows what my fate would have been had that large piece of valve torn loose. At least I now knew why I had a little more energy. My heart no longer needed to pump blood through a tiny opening in my stenotic valve. The opening was now bigger and apparently my heart was not straining as much. The physicians had not yet entered the room, and the technician’s and my eyes met in response to seeing the big piece of valve torn loose and hanging by a thread. She looked at me and said, “Oh, you’re in the right place.” That was some of my last recollections in the procedure room as the anesthesiologist had entered and was administering my anesthesia.

It’s amazing to me to think that a large replacement heart valve could be collapsed down to the thickness of a lead pencil, be inserted into my heart through my groin artery, and then blown up to full size. The frame of the valve, or stent, is a metal mesh made from cobalt and chromium. It is strong yet flexible. The tissue in my replacement valve was bovine (i.e., made from tough pericardium tissue from a cow’s heart). The manufacturing of a bovine aortic replacement valve requires hundreds of stitches to form the leaflets of the replacement valve. The tissue is treated with a chemical that sterilizes the tissue, kills any live cells, and preserves the tissue for endurance purposes. It is treated with an anti-calcium building solution to reduce the chance of future stenosis. Finally, it is tested for quality assurance, because the leaflets will be opening and closing around 70 times a minute for many years to come.

The bovine valve is very different from using a pig (porcine) replacement heart valve. When using a pig valve, the entire valve is harvested and implanted as a whole valve. Some people argue about which is best, but the bottom line is that they are both good.

Everything went as planned during the procedure until my team implanted the valve into the heart. At that point, the metal frame of the valve bent around the calcification in my heart and about half of my blood was leaking around the outside of the valve and then leaking back into my heart after every beat. My team was now finding out why they had been reluctant to perform the procedure. They were not sure what to do. I was alive, and if they did nothing more, I probably would live another 6 months to a year. However, I would most likely be wheelchair bound and have no energy for daily activities. If they tried further intervention, I could die on the procedure table, and they certainly did not want that. Also, they ruled out taking me to the operating room. My cardiologist remembered from our prior discussions that I had told him I did not want to live as an invalid. I had always been active, and I wanted to return to my normal active life.

Based on my previously stated wishes, they decided to insert a balloon catheter into the valve and try to force the frame into a normal straight shape. Apparently, the tension was palpable. Too much force and the heart could rupture, and I would be gone on the spot. Using a balloon catheter, they were able to expand the collapsed frame of the valve back into a straight alignment. There was no damage to my heart. The calcification had been pressed out of the way. Some blood leakage existed, but it was minimal. They abandoned any plans they might have had of expanding the valve to minimize any leakage around the outside of the frame. It was working, and they decided to leave well enough alone. Using a smaller valve turned out to be fortuitous. Later, my cardiologist told me I was very lucky. There was a lot happening during the procedure that could have gone wrong but did not. I went home a new person the next day following the procedure.

7. COVID-19

Despite all my precautions, I contracted COVID-19 just short of 2 years following TAVR. At first, I was not too sick, but after day four I did not feel at all well for another week. I tested positive for 12 days. My general practitioner (GP) felt it was not necessary for me to be treated with antiviral medication. In hindsight, antiviral medication might have both speeded and eased my recovery. I had received all the recommended vaccines and boosters, and that no doubt helped me avoid serious illness of hospitalization. My cardiologist told me the replacement valve was likely important to my being able to fight the virus. My biggest complaint post-Covid-19 has been a loss of energy, but my energy level finally began returning to normal about 5 months since I stopped testing positive for COVID-19.

8. Conclusion: life after a TAVR replacement aortic heart valve

I visit my pacemaker physician every 4 months. I am told that of all his patients, I have been living the longest with a pacemaker – almost 40 years. Unfortunately, his next patient living the longest with a pacemaker is a 42-year-old man who received his first pacer when he was 6 years old. I say unfortunately, because it makes me feel very lucky to not need my first pacer until I was 44 years old.

I am now in my third year following TAVR. I would describe my life as normal, or like it was before I became symptomatic with heart issues. In fact, if anything, I have a little more energy now with less discomfort when I exercise. I walk twice a day (about two miles total). I have been able to vacation on the Central Coast of California for up to a month at a time. This is my favorite vacation. I do not feel that the money spent on my procedure was wasted nor do I feel guilty about the cost of the valve and implantation procedure that was fully covered by my insurance (i.e., in the neighborhood of $150 K). I fully realize that life is uncertain and that I was lucky. However, I give thanks every day for the skill of my medical team and their staff and for the extra days (now years) I have been given.

I received my TAVR 50 years after Paul Dudley White said I might surprise the cardiologists in the room who wanted to operate, and that he could not recommend me for valve replacement at that time. I thank Dr. White for his clinical expertise and experience. I sincerely hope that hearing my version of my heart valve experience will aid and be of comfort to other patients and physicians in the future.