I thought the summer was a long strange trip, but after a couple of months of recovering from endocarditis my heart odyssey jumped on the fast track in a hurry. After a week in the hospital at the beginning of August, I spent the rest of the month resting and getting rid of the infection attacking my heart valve. Once I finished the antibiotics, my attention quickly shifted to the impending surgery. I wanted to hurry up and get it over with. I started reading up on the procedure and my options—mostly internet reading from hospital sites. I got the basics pretty fast and quickly learned the fundamental choice I was facing.
Most hospitals offer two ways of fixing a leaky heart valve like I had. They can install a mechanical valve or they can put in one made of animal tissue. Both are tried and true methods done in good sized hospitals all the time. Each comes with its own problems. Mechanical valves require anticoagulants for the rest of your life, which can turn bad injuries into life or death situations. Tissue valves just don’t last very long, especially in someone as young as me, so in getting one you sign up to do open-heart surgery again in 5 or 7 or 10 years.
Before I finished my antibiotics I met with my cardiologist, just to check on everything. I really wanted to talk surgery and options, but he wanted to put things off a few weeks and give my body a chance to get over the infection. I also wanted to get talking to surgeons about my options because I was quickly learning that not everybody could or would do the same things. I really needed to find out what was possible. The day after I met with the cardiologist I scheduled another appointment with him for the following week. I wanted to talk more about my surgery options, move my schedule a little faster, and find a second surgeon to talk to. During that next meeting he agreed to move the surgery discussion up and gave me his opinion on my surgical options—“I try to keep patients off Coumadin (anticoagulant).”Before I left his office, he helped me schedule an appointment with the surgeon who had followed my case in the hospital here in Columbia and told me he would do the same for any other surgeon I wanted.
I met with the surgeon here in Columbia and he fairly plainly laid out what he would do. Like me, he really didn’t like the idea of making a choice that put me back in the operating room in 5 years. In all likelihood he would end up putting a mechanical valve in. I quizzed him about other procedures I had read about on the internet and he gave me his opinions. He told me that there are some doctors who try to repair a valve before they take it out, but that he wouldn’t offer me that as a treatment option. He said he would not know if repair was possible until the surgery was underway, it was a more complicated operation, and there are no data on how long a repair would last. He is a conservative doctor and for him the best approach was the one that had the greatest chance of fixing me and keeping me out of the operating room for additional surgeries. I appreciate that take on things. This is my body and my life I was making decisions about after all. He did say that there was a surgeon in Charleston at the Medical University of South Carolina who would offer me repair as an option and he would be glad to set up a consultation with him.
Now I had wanted to see a second surgeon, just to get a second opinion and a second perspective on my situation and heart valve surgery options in general. I was still convinced I would go with the surgeon here in Columbia. Providence hospital here has a very aggressive marketing campaign touting them as the best heart hospital in the state. They’ve got billboards, TV commercials, and lots of stuff on the hospital website. It all made me pretty confident that this was the best place I could go in South Carolina to have my surgery. Still, I wanted to do my due diligence.
I had come across discussions of valve repair surgery on the internet, mostly on hospital websites, and it seemed like only the really big ones like Cleveland or the Mayo Clinic had people offering it. Most of the rest of the internet info didn’t say much about it so it seemed like it wasn’t a viable option. Still, I wanted to hear more about it. I knew that the expectation is that repaired valves will last longer than tissue replacements and maybe even the rest of the patient’s life.
Later that same day, as I started to get more interested in the possibility of repair, I spoke to the assistant for Dr. Ikonomidis at MUSC about coming to see him. She checked his calendar and said his next opening was October 6. This news was both disappointing and frustrating because I now really wanted to talk to this guy, but I also really wanted to have the surgery by the first week in October. I just didn’t want to wait any longer. I felt like I’d been kicking this can around long enough and it was time to just jump and get it over with. So, I took the next available appointment with another heart surgeon at MUSC just so I could have that second opinion. After making that choice, I was really bothered the rest of the night. Now I am sure he is the bomb diggity squared, but I started to realize that it was really important to me to check out the repair angle. The next morning I woke up resolved to take whatever appointment I could with Ikonomidis and delay surgery if I had to. So I called his assistant back and explained that I wanted to change my appointment so I could see him. I asked if there was a waiting list for an earlier appointment and explained that it was really important to me that I talk to him. She ended up triple booking me for an appointment the following Tuesday. So I didn’t need to wait after all.
The Monday before my appointment I got a call saying they had pushed my appointment up an hour. The next day I drove to Charleston and got there an hour early. No sooner had I checked in than I was called back to see the doctor. So I went from triple booked to seeing the doctor as soon as I got there. Blind luck, a good omen? I think a little bit of everything including the doctor’s influence. I think once he saw my file and knew I was a candidate for a valve repair, he got interested in me. I don’t mean that to sound like he only saw me as another notch in his belt, but I think his interest in doing valve repairs helped me.
MUSC is a teaching hospital so I met one of the doctor’s students as she came into the exam room to get my file. Then the two of them came in. I told him about my understanding of my surgery choices as presented in Columbia and that I really wanted to avoid the anticoagulants but also didn’t want to have surgery every 5 to 10 years for the rest of my life. I can only describe his reaction to me as being excited—as if he was excited that he could do something no one else in the state could do and it was exactly what I wanted.
He told me his first strategy would be to repair my valve. Valve repair is his specialty and he is one of only a very few doctors in the US that offer valve repair as an option. If he couldn’t repair the valve, he suggested we go ahead with a tissue replacement instead of a mechanical because he could do something at MUSC that they aren’t doing very too many other places. He told me once that tissue valve expired, he could insert a new one inside of the expired one using a catheter. He wouldn’t need to do surgery again! He said his goal was to keep me off Coumadin for life and keep me off the operating table for at least another 20 years. Needless to say, I was excited to hear about both what he could offer me in terms of treatment options and also his philosophical approach to my long-term care. I cannot tell you how glad I am that I persisted in seeing him.
My final question to him was how soon I could have the surgery. I was thinking it might take a week or 10 days to get it scheduled. He said, “How about Friday?” That really caught me off guard and forced me to get my brain around the idea that surgery was definitely coming. Before this, surgery was a theoretical thing I was preparing for. If I did it that Friday, surgery was only 3 days away. I called my wife and I drove to the beach at Folly Island to think. I am not good at making fast decisions and I wanted to make sure I wasn’t just jumping at what sounds good to me rather than what was really best for me. I called the doctor’s assistant back from the beach and scheduled my surgery for that Friday. Then it really started to hit me. I was going to have open-heart surgery and then I was going to have to recover from that. It was fine at an intellectual level to consider and research my options. It was another entirely to face having to do it.
It was a little overwhelming. I had a lot to think about and a lot to do to get ready. I still didn’t have a will or a health care power of attorney. I didn’t expect to need either, but just ignoring them would have been irresponsible. Of course, setting out in writing that you want someone to pull the plug if you become a vegetable really brings home the fact that there was a possibility that I might not make it off the operating table. Besides those kinds of big things, there were small logistical details. How would my wife and kids deal with the 100 mile drive to Charleston to visit me? I needed to go down the day before for a preoperative work up. Would I come back home or stay in Charleston? If I stayed, how would we get the second car back home? I started to get pretty stressed. Fortunately, it was all coming at me too fast for me to stay stressed for too long.
I learned something really interesting and a little disturbing during this process of exploring my surgery options. At one level, I should have known this already. At another level I expected that life and death decisions might be immune to this. Here in Columbia we have a hospital that specializes in heart surgery. They advertise aggressively as South Carolina’s heart hospital—they have giant billboards all over town, run TV advertisements, and market heavily on the internet. When I was sick with endocarditis, I felt like they took very good care of me so I was predisposed to think of them first for my surgery. As I started to research the Medical University of South Carolina, its doctors, its facilities, and its statements about what they do I started to see some contradictions. They seemed to be really good heart hospital with people doing some cutting-edge things. You wouldn’t know that if you just listened to the marketing here in Columbia. I visited the local hospital’s website designed to help you make a decision about where to have heart surgery. I found something surprising. They compared themselves to a bunch of hospitals in the state, but they did not compare themselves to MUSC—at all. It was then that I realized the medical services industry is not immune to the same kinds of marketing shenanigans found in all other industries. Sure, it was naïve of me to expect otherwise, but it still pissed me off.
Now, don’t get me wrong. I believe the local hospital here in Columbia is an excellent heart hospital and I would have gotten excellent care. However, if I only listened to their marketing I would have missed a chance to have my heart valve repaired instead of being replaced. Somehow the fact that making money takes precedence over letting people know their options…again, especially when it comes to heart surgery--really bothers me. I wasn’t buying that Specialized Roubaix SL3 Expert Compact (with Shimano Ultegra components, FACT 10r carbon, tapered head tube, Zertz vibration damping inserts, and internal cable routing, MSRP $3700...are you reading, Santa?) that I would love to own. I was trying to make a decision that would affect how I lived the rest of my life. To be fair, the doctors affiliated with my local hospital were very open and honest about what they could and couldn’t do and even about what others in the state could or couldn’t do. If I had found that my doctors were part of the marketing charade, I would have been really disappointed. Still, this was an eye-opening experience for me.
At 46, I am still learning that life is not all goodness and light.
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