Picking a valve

When I was in the hospital in February, and there was serious consideration of doing surgery then and there, I was told that I had a choice to make. I could have a mechanical valve. I could have a tissue valve. The advantage of a mechanical valve is that it lasts forever. Its disdvantages are that I would have to be on lifelong Coumadin, an anti-coagulant, and that it makes noise. With a tissue valve, it would be silent and I would not need the anti-coagulant, although it may not hold up for the rest of my life. At 62 years of age, I am in a gray zone regarding whether I should go for the tissue valve, with its limited life expectancy, or the mechanical valve. There is one caveat, which pushes toward the tissue valve, and that is developing technology. There is a reseach project going on now, in which they are replacing heart valves through a catheter. If it is successful, and the doctors believe it will be, that technique would be available by the time I needed another operation. This would be like using a stent to treat a blockage in the coronary arteries instead of heart bypass surgery. If I had the surgery in February, my knowledge and choices would have been limited to the information I just gave.

With the operation in July, I have been given a larger number of things to think about. First, it is not completely clear that the surgeon can avoid using mechanical valves. I use the plural, valves, because he will not know whether he can fix my mitral valve until he sees it. If he can, that's one valve, the aortic, which will be replaced. He can use a tissue valve for that. If he has to replace the mitral valve, he is not willing to use a tissue valve for that (it does not last as long as an aortic tissue valve), so its a mechanical valve, with lifelong Coumadin. So as long as I'm taking the Coumadin, he would use mechanical valves for both.

My surgeon likes the St. Jude valve, a tried and true product, which has been on the market for years. There are some other valves, some he'll use, some he won't. Two valves he feels comfortable with are the On-X or ATS valve. He suggested I look them up.

For years, Maryka and I drove two cars, a Honda Accord and a Dodge Grand Caravan. The Accord, as I am sure you know, is a reliable sedan. The Grand Caravan is a family car, useful for transporting a caravan of young people, to school events, parties, and baseball games. More recently, I purchase a Hynundai Elantra, less flashy than the Honda, but clearly an econcomical, reliable car. With the children grown up, Maryka said she wanted a Mazda Miata. When she first said this, I did not exactly know what it was. But the name, Miata. Hm. Caravan? Miata? It speaks for itself. Sometimes, I drive her car, since she needs mine if she goes shopping, or has more than one passenger. Pretty neat, a 62 year old man, motoring around in a cool sports car.

So, I'm been thinking, am I going to settle for dowdy St. Jude's valve, or be hip this time: an ATS. Maybe, I should really get bold, and ask for the On-X.

My Weekly Reminder

Saturday is the day that seems to remind me I need this operation. I feel pretty good all week. I've been working overtime, getting things in order as well as making extra money anticipating lost work time. I have no sick leave, working for myself. I have the energy to do this, so it leaves me feeling doubtful, wondering why I agreed. Then, comes Saturday; tennis early in the morning, a visit to my mother for breakfast after that.

The two weeks before this one, I had to leave the tennis court early. The first week, I ran for a ball lobbed over Lee Phillips head, and was done after that. The next week, I decided to serve hard (always my best stroke), and left the game after only a half hour. This week, I decided to take it easy, and was able to play for a full two sets. Yet, running around less and easing up on my serve, I was still the most winded of anyone on the court.

Then, I went to my mother's apartment. We had breakfast. She wanted me to take her to the store, but before we left, the toilet overflowed. I shut the water off, got some cleaning supplies, and went on my hands and knees to clean up the floor. My mother kept questioning whether I was working too hard, with my heart the way it is, and I told her not to worry, it was a very small job. She's 85 years old, and I certainly did not want to leave it for her to do. It took about ten minutes. Although I didn't tell her, I was truly out of breath. Nothing serious, but certainly a reminder that I need this operation.

Small things matter

I work as a psychologist, by myself. It's just me, and Carrie, my office staff of one. I see a lot of people, for evaluations, one time only. There are some people I talk to more often, a few lawyers who send me cases, and the counselors who work at the Division of Vocational Rehabilitation (DVR). Each month, I travel once or twice to four DVR offices: Mt. Holly, Thorofare, Bridgeton and Camden. We have cordial, but somewhat formal relationships. I'm Dr. Goldberg, not Ken, to everyone there.

Last week, Carrie and I made a mistake, and I got scheduled at two of these offices, Camden and Thorofare, on the same day. I was sitting in my Haddon Heights office expecting to leave shortly for Thorofare when Liz, a Camden counselor, called to find out where I was. She had a client wanting, the first of many appointments scheduled for the day. There was no solution, and I scrambled to work things out. We called Thorofare and told them I would get there late. I rushed to Camden to see the person who was there, and a few more, until the others who were scheduled later in the day, could be called and given different dates.

It all worked out. But what surprised me was the reactions from the Camden staff when I arrived. No one expressed disappointment, only concern and relief that I was okay. They knew I was having surgery, and were extremely concerned for my health.

Today, I was back in Camden, for the last time before the operation. I felt such warmth. No hugs; the relationships are too formal. Yet, I was approached by many people, asking how I felt, wishing me good luck, shaking my hand in an extra warm way. These people are not my family, or members of my church. I don't expect that level of concern. I was truly touched.

Meeting Howard

So far, I have been focusing on things that happened in the past, carefully avoiding what I feel right now. There's a reason for that. I don't want to go. I want to hide in the bushes and make it go away. I'm actually feeling quite healthy, so I start to harbor doubts that I really need surgery. But everything is planned. My patients are aware that I'm taking this break. My referral sources have been apprised as well. Friends have offered lots of support. I feel my family's love for me. Matt is flying in. I guess there isn't any turning back now. Maybe, it'll be fun.

This reminds me of my first marriage. I knew it wouldn't work. I remember thinking, as the rabbi recited the old Hebrew text, "There's always divorce." But, it wouldn't have been cool for me to chime in, when they asked if anyone had good cause why this couple should not be wed. The caterers had been paid, and I must admit, the food was good.

I should speak up now. I have good cause for not having the operation. It's gonna hurt. They're going to break open my chest and insert a lot of tubes ... and you know where.

Anyway, let's get to the topic of today's post: Meeting Howard. A few weeks ago, I learned that Howard went to the hospital, and that he, too, had heart surgery. I kind of envied him, getting it over when things first happened. I would have preferred if they just did it then, when I was in the hospital in February. But they sent me home, knowing I'd have to come back.

Maryka and I met with Howard and Jane, last Monday. We were going to bring food to Jane's house, but she insisted on going to a restaurant instead. We met. Had a great time. Howard looked great -- upbeat, light-hearted, doing very well, and only 20 days after his heart operation. Pain, I asked him? Not really, he said. Discomfort, but not that much pain.

Thank God (or for us Secular UUs, thank whatever) for Howard. We really had fun, and I think it helped me feel a little better about what is coming up. I'm ready to go ... I think.

High Blood Pressure

I've had high blood pressure all my life. Theories of how to treat it have changed throughout. High blood pressure was one of the signs the doctors used to diagnose my first heart murmur, the coarctation of the aorta. Since the coarctation blocks blood flow at a certain place in the aorta, blood pressure is high at points north, and low at points south. Blood pressure in my right arm exceeded blood pressure in my left arm. Blood pressure in my legs was quite low. If you look closely at my right and left hands, you'll see a significant different in size, the right much larger than the left. I believe that is due to differences in blood flow during those early year. Although it can't be measured with a stethoscope and sphygmomanometer, blood pressure in my head was also very high. As a child, I had some stroke risk. As far as I know, my blood pressures leveled out after my operation.

I mentioned before that the school doctor did not pass me to play on the tennis team. The reason was that my blood pressure was high. The aortic insufficiency affects blood pressure in a different way than the coarctation. I have a high systolic, but low diastolic pressure. My heart works harder to pump out blood, raising the top number. Without a tight valve holding the blood back, pressure is low between heartbeats.

As a child, I was not on blood pressure medication. I needed blood to my feet, so I had to live with some stroke risk. At 17 years of age, when the aortic insufficiency was diagnosed, there ensued a debate among the doctors. The great Dr. Gross chose to wait and see, regarding surgery. Another prominent doctor, a cardiologist, Alexander Nadas, pressed for the operation. They gave my parents differing recommendations. When Dr. Gross, the surgeon, would not operate, Dr. Nadas decided to treat my high blood pressure. I was sent home from Boston Children's Hospital on Reserpine.

Reserpine is an awful drug. Before Thorazine, it was used for the treatment of schizophrenia. Just like it calmed down agitated folks, it sent me into a major depression. I went through the rest of my junior year of high school, in a fog. It took about three months for me to adjust to this medication. By the summer, I could function (I did manage to pass that year, but not very easily). The next year, they gave me Aldomet in place of the Reserpine, and also added a water pill. These medications continued to the end of my college years.

In 1969, I moved to New York to attend Columbia University. I decided, at 22 years of age, that it was time to leave Boston Children's Hospital and find a doctor who treated adults. Dr. Nadas gave me a recommendation, Dr. John Laragh of Columbia Presbyterian.

Dr. Laragh was a major researcher in the treatment of hypertension. He oversaw a multidisciplinary team. I called and was given an appointment with Dr. Vaughn, a member of his team, who happened to be a nephrologist, not a cardiologist. Dr. Vaughn had me take a 24 hour urine test: a 24 hour sample, followed by another 24 hour sample, four days later, after consuming no salt. Always the good patient (not the one to think of hiding in the bushes to avoid heart surgery -- although I am considering it this time around), I surprised Dr. Vaughn who, after reviewing the results, commented that I really did not consume any salt. Dr. Vaughn explained that I had no essential hypertension, the readings were entirely due to the defect, and that, because of this, I no longer needed to be on blood pressure medication. Now, mind you, I was running blood pressures which, without treatment, were hopefully at 160, and could spike to 220. Yet, the diastolic number was always low, and Dr. Vaughn insisted that I was not at risk.

With the exception of one cardiologist I saw for a couple of years, Dr. Budeau (pardon my French, but I don't recall how to spell his name), this opinion was shared. Dr. Budeau had me on a water pill. Yet, Drs. Pearlstein in Brooklyn, Williams in Indianapolis, and Ginzburg in New Jersey, all concurred that I did not need treatment for my high blood pressure.

Things changed in 1990, about ten months before I had endocarditis. I started to experience a "spider" in my right eye. Whenever I lay down, a spidery figure would cross my visual field. It seemed larger than a floater, and I had heard this can be a sign of a blood blot. I saw my optometrist who sent me quickly to an ophthalmologist, who sent me directly to a retinal specialist, with the diagnosis of a Retinal Vein Occlusion.

The occlusion is a blood clot in the vein where the retinal artery and vein are close to each other and to the optic nerve. The condition causes blindness (fortunately in just one eye). Although not in the brain, one can liken it to a stroke. Although he gave me some medications, he also told me there were no effective treatments for this condition. Dr. Brown, my retinal specialist, was the first doctor I had seen in years, who expressed concern about my untreated high blood pressure. It was his opinion that my elevated systolic pressure was not as innocuous as I was to believe. He thought I needed treatment (In later years, I began to realize that Dr. Brown's reaction may have involved a personal note. There were a few years when Dr. Brown was unavailable for unstated health reason. When he came back, he looked energetic and fit. I wished him well with his health, and gleefully patted his abdomen while proclaiming, "brand new kidney.").

I reported to Dr. Ginzburg, Dr. Brown's concerns, to which he let me know, they had just changed the theories. Whereas years of conventional wisdom said they should not treat my blood pressure, it was recently learned that systolic only blood pressure does cause harm. So now I take four different medications, with my blood pressure under control. Of course, this has still left me with over twenty years with untreated high blood pressure.

Medication

Over the years, I have been given a number of medications for preventive reasons. They fall in two categories: antibiotics and anti hypertensives. Neither actually cures anything, and neither causes me to feel any better. Of course, I can see how medication reduces blood pressure, but that's not a goal by itself. The question, rather, is how medications will keep me from getting more ill.

I have also witnessed, over these same years, major shifts in medical thinking about what should be done. This decade's conventional wisdom changes in the next. So I find myself dutifully following recommendations, to keep me well, which I are later considered to be wrong. Yet, despite the fact that the wrong thing was done, my overall health, with a few major exceptions, tends to stay stable. I don't get sick just because, for years, I did the wrong thing. This experience has impacted my perceptions of the world, my views on the medical field, and on my perspective in my field of psychology. I'll start with antibiotics.

It is generally understood that when one has a leaky heart valve, there are infective risks. It's been explained to me through a plumbing analogy. If you have new pipes, water flows freely. If you have some rust, the rust becomes a site on which things can accumulate. Similarly, a damaged valve is a site on which bacteria (or viruses, or fungi) can seed. Once settled in that site, they begin to multiply and grow. The condition is called endocarditis and it is quite dangerous. It can't be cured with simple oral antibiotics, but requires hospital treatment and weeks or more of intravenous medication. Hopefully, the organism is a bacteria, since the other possibilities are much harder to kill. Untreated, the condition can be fatal. Common illnesses do not lead to endocarditis, but blood born infections do. Consequently, it is considered important to prevent bacteria from entering the blood stream.

The American Heart Association publishes guidelines for protecting people like me, from endocarditis, with the most common concern being dental work. Evidently, we all have bacteria in our mouths. The gums give rapid access into the bloodstream. Common dental procedures, such as preventive teeth cleaning, can cause these bacteria enter. Although less likely, cuts in the gums from using dental floss, can do this, too.

Sometimes, the AHA publishes more stringent guidelines. Sometimes, they ease up. Recently, the guidelines have lessened considerably.

For me, it has been a bit surreal. When I was first diagnosed with an aortic insufficiency, they did not have these antibiotic recommendations. Dentists did not ask me if I needed prophylaxis, and I did not use it. So, I have a considerable experience of having my teeth cleaned, without this protection, without harm.

In my later 20s, I was suddenly told this was absolutely necessary. I would take medication for five days, two days before as well as two days after, when having dental work. Further, there were concerns that any infection in my mouth, even a common sore throat, could make me seriously ill. So, I had lots of antibiotics. Lots and lots of antibiotics. Every sore throat created fear, a trip to the doctor, and frequently, medication. In fact, one doctor wanted me to take an antibiotic pill, every day, for my entire life. As we now know, that practice can breed medication resistant germs. Fortunately, I never followed through on that suggestion.

In 1990, I was working at a hospital and was able to get medication from the hospital's formulary. With dental work planned, I got a supply. Something happened so that the procedure did not take place. I put the pills in my attache case, without further thought. In the fall when I did visit the dentist, I noticed I still had those pills. It did not hit me that, because I had carried them around through an entire hot summer, they were no longer potent. A few days after I saw the dentist, I developed fever. I saw my doctor. He gave me antibiotics. I felt better until I finished the prescription, and had a fever again. After repeating this routine with the same result, I had blood culture, which showed I had endocarditis.

After a three week hospital stay and four and a half weeks of IV treatment, I did get better and life went on. My new prophylaxis recommendation was IV antibiotics in preparation for dental work. For years, I had to arrange for a nurse to come hours before any dental procedure, to infuse the medication. More recently, my doctor has agreed to reduce the pre-treatment to an intramuscular injection. For this, I order the vial from my pharmacy, take it to my family doctor where the nurse gives the injection, and then mosey on over to my dentist's office. The routine is much better than the one before.

Here's the odd thing. Recently, the AHA has changed its recommendation to drastically reduce the use of pre-medication for people like me, with heart valve disease. If I were following today's recommendations in 1990, those antibiotics would not have been prescribed. Does that mean I would not have gotten sick? I didn't get sick in my 20s before they had these recommendations. Has the AHA, in an effort to not overuse antibiotics created a situation in which heart valve patients are now left unprotected? Is it still true that I, personally, need this aggressive approach to pretreatment for dental work?

I find the whole thing puzzling. These recommendations are not meant to cure an illness, but to keep some rogue bacteria from doing its dirty work. It may be like homeland security, overkilling on civil liberties, to block a terrorist cell. Anyway, I do what I'm told, and hope things works out.

Being active

In general, my heart condition did not restrict what I could do. As I mentioned before, I was not allowed to join the tennis team. Twice, as an adult, I challenged that view, by signing up for a mixed doubles tournament. Each time, I played extremely well in the first match. By the second round, I was totally shot. The doctors were right. I could not handle competitive tournament play.

As a child, I recall two restrictions. Before my family bought a one story house, we lived on the second floor in a garden apartment complex. I was not allowed to run up and down the stairs like other chidlren do. If I was playing downstairs, I had to stay there. Once I came upstairs, I could not go back.

One day, I was expecting a gift -- a portable radio. I kept coming to the door, calling upstairs, to find out if it had arrived. I was worried about what I would do when it finally came. Do I continue to play outside? Do I come upstairs to see my radio? It's odd. I have three children. I cannot imagine any of them, at four or five years of age, giving it a second thought, whether to run and gleefully see their gift. But I was worried. In the end, the radio arrived. My mother came downstairs and brought it to me.

My other childhood restriction was that I was not allowed to ride a bike. I was promised that I would get, after the operation, "the best bike in the world." My parents seemed to think that I could hurt myself braking the bike with my feet (for some reason, Goldbergs did not have bikes with hand brakes). At ten years old, I finally learned how to ride a bike.

At 12, I went with my brother on a bike ride. Suddenly, we were barreling downhill on a fairly steep grade. I was scared. I was scared of the speed, and I was more scared of pressing down on the brakes. Instead, I steered my bike into a mailbox. By the way, this was before children wore helmets when riding bikes.

My Heart Surgery

In just 18 days, early in the morning, I will be in a deep sleep, as Dr. Michael Rosenbloom begins what will be the most important operation of his career. Perhaps not to him, or to many other people, but important to me and some other people who have shared my life so far. It's not a surprise. I've waited for this day for 45 years. It almost happened in 1964 and could have taken place any time in between. But July 8, 2009, is the day, I go under the knife. Let me share my story.

I was born in 1947, at first appearing a healthy little guy. At 3 or 4 years of age, as I've been told, I stopped running around as children tend to do. My parents took me to the doctor who determined that I had a serious heart murmur. 1951 and 2009 are worlds apart. Now, the solution might be fairly simple. Then, it involved a very dangerous operation. I was diagnosed with a Coarctation of the Aorta, and the condition required a surgical response. In those days, very few doctors were having success, so my parent took me to Boston Children's Hospital (we lived in Trenton at the time), to see whom I was told was the "Best doctor in the world." As a child, I always wondered how anyone could tell. I thought there might be some other doctor, in China, on the other side of the world, who might just be a little better than he. Best? Second best? I can't say I really know, but from the reactions I get from many doctors even now, he was a giant in the pediatric heart surgery field. So, we trekked up to Boston to see, the famed heart surgeon, Dr. Robert Gross. Dr. Gross confirmed the diagnosis, but chose to wait six more years for the surgery to be done. At 10, in 1957, I underwent the operation I needed.

I was a trooper, and hung my hat on being a great patient. I went forward without a fuss, without any fear. Years later, I met a guy who had the same operation when he was a child. Getting out of the car at the hospital, he quickly ran away, and hid in the bushes. He was found, and the surgery went on. I never thought this was something that I could do. It wasn't in my character. Dr. Gross was the best doctor, and I was determined to be the best patient, in the world. The surgery was successful, and one year later, I was dismissed from the great doctor's care.

The heart problem kept me from doing the things young boys are wont to do. I loved baseball, but I simply could not play, or sustain the effort that other children did. I tried youth baseball for one year, but did not go back, it was simply too hard. A few years after I had the operation, I went with some friends to a tennis court. A less popular sport in those days, I was on equal footing with the other kids. This piqued my interest and I began to develop good tennis skills. In junior high school, I met and played with some members of the high school tennis team. They were older than me, and I was a bit behind, but nevertheless, I realized then that I had a good chance of playing on the high school tennis team.

In the fall of my freshman year, the tennis coach ran an informal tennis program. I played everyday, further supporting my belief that I could earn a spot on the team. The spring came, and I signed up for tryouts. The first step was a physical exam. I saw the school doctor, and to my surprise, he would not okay me to play school sports. It wasn't the coarctation. He found something new.

I begged to play, and pushed my mother into challenging the decision. When the doctor heard I saw the great Dr. Gross, he agreed to defer to Dr. Gross' decision. We went back to Boston but to my dismay, Dr. Gross would not let me play on the team. He had no objecction to my playing tennis, but not in a situation where I could not back out, if I did not feel well.

The next year, I did get sick, and again went to see the great Dr. Gross. This time, he was concerned. I spent a week in the hospital where I was given the diagnosis of Aortic insufficiency. There was serious talk of another heart operation, then and there. Dr. Gross, however, decided to wait a year. A year became two, and eventually 45.

That's today's post. The story will go on.