There is something glamorous about open heart surgery, it is more exciting than many surgeries I can think of – nobody wants to talk about gall bladder surgery – and it is a great adventure in many ways. If you are going to have surgery, this is one of the big ones, people are quite wide-eyed and curious about it. Stopping the heart touches the imagination – it both enchants and horrifies – and I can tell people are a little surprised I am walking around at all. Some people want to know all about it, many cross the street if they see me coming, others ask me how it feels to brush against the Reaper. Not quite, I say, not quite, but he was in the building, for sure.
Most people cut you a lot of slack, at least for awhile. You are off the clock, treated sympathetically, brought food. People open doors for you and get out of your way. You can expect to be taken care of (up to a point, if you are married to an artist) and for a brief while.
And then there is the heart itself, a subject of great fascination for almost everyone.
But it is important also to talk about the less glamorous but critically important behind the scenes stuff of major surgery like open heart surgery, the nuts and the bolts, the post- surgery management that is essential to healing but is much less exciting and interesting for the patient. In the hospital I was cared for every second.
Outside, it is different. Maria is back at work, I am mostly on my own. Heart surgery is quite complex – the heart is central to life and affects almost every part of the body. It is important, and when it is stopped, disrupted and re-worked, every part of you feels it – the way you walk, breathe, elminate, eat, feel, work, think and sleep. My body was out of control, I am getting it under control bit by bit, organ by organ. American health care is a complex hydra-headed thing with many parts and many elements. It is amazing in terms of what it can accomplish almost routinely, a runaway monster otherwise.
I used to have one nurse-practioner, at the moment, I have a half-dozen doctors and a nurse-practioner and they all seem to have different ideas about many things. Also, none of them ever seem to talk directly to one another, they communicate through e-files and aides and assistants, if at all. My cardiologist is responsible for my heart care, my surgeon for the surgery, my endocrinologist for my diabetes (and a nurse practitioner), I have an opthalmologist responsible for my eyes, and an orthopedic surgeon making sure my legs and feet are okay.
They are okay, but if you have diabetes they have to check anyway, especially after surgery. Every doctor treats diabetics as if their heads are about to fall off, along with their feet, even though they rarely do if the diabetes is controlled. I have to keep showing them the Stanford stats, which show that people who control their diabetes 2 can lead long and healthy lives. The doctors don’t seem to want to hear it.
Plus there are my regular doctor and nurse-practitioner who are, I guess, eventually responsible for my overall care. But not yet. At the moment, they are like spectators at a NASCAR race, trying to keep pace with all the fast-moving action around them, the big specialists who are emperors in their own nations.
And then, of course, there is health insurance, always the elephant in the room, I know my surgery cost about $150,000 from the hospital where my surgery is performed, and there is a second hospital to be heard from, the one I was admitted to first. I believe my health insurance will cover most of it, but I don’t really know for sure yet, we are getting all sorts of strange and complex an indecipherable bills in the mail and they are long and unnerving. I know there are lots of co-pays, a couple every day.
Managing these appointments is a major clerical task, filled with tree phones, waiting times, paperwork, HIPPA and permission forms, I give my birthdate about a dozen times a day, offer my insurance ID number, shuffle appointments around and try so that they don’t collide and leave a bit of time for my work. I find there is one super- competent and responsible person in each doctor’s office, the trick is to find them and hang onto them for dear life.
Blood is taken in different places, the results rarely shared. This idea of computerized medical records is a complete myth, I now ask for paper printouts and take them with me. Same with X-rays. It is up to me to keep track of my medications, no one else seems to want to do it. Everywhere I go I have to take all of my medications with me (there are eight or nine at the moment) so they can be recorded. All of the doctors can prescribe, they do not always agree on the amounts or frequency or side effects of things. Usually every doctor raises an eyebrow about something one of the other doctors has done and suggests slyly that he or she wouldn’t have done that. It does not inspire confidence.
It is remarkable how many decisions I get to make on my own, it is amazing how few I get to make, if you know what I mean.
I am now taking about a dozen different medications. That should go down over time, not yet.
Keeping track of my medications alone is a monumental management challenge, especially for a person like me who can rarely find matching socks. And you don’t want to mess up, you will feel it everywhere. Some pills must be taken in the a.m., some in the evening, some twice daily, some for a few days, others for the rest of my life. So far I refuse to get one of those old people pill boxes, but I may cave soon. In takes a long longer to get rolling in the morning than it used to, it takes about a half hour at the beginning and end of each day to get organized, take my medications and check all of my various indicators and barometers. Some have to be taken with food, or you will regret, others far apart from each other. All have side effects, many of which compete with one another.
There is also, it ought to be mentioned, the physical stuff, I will not go into much detail on that. Healing scars, pain and pulls from IV’s, lines, aching chest, sweats, blood draws. My body is still quite a bit out of control and unpredictable, although things are, as I was assured, getting a little bit better every day. Today is the first time in a month I made it through the day without a two or three-hour nap. I took a three-mile walk mid-day in the sun, something I could not do last week, then rode my stationary bike for 30 minutes and I could have gone a good deal farther, but wisely did not. The bike is also something I could not do last week, it will be so valuable in the dark winter.
Tomorrow, only one doctor’s appointment before a two-day spin in New York City with Maria, I am very excited about it, I can bring my camera and will get some fresh carriage horse photos. I gather I will need them, the mayor is moving forward on his promise to banish the horses from New York. I hope the rumors are true, that the carriage horse people have hired a good lawyer.
So there is the surgery, and there is the management of the surgery, one is as important as the other. Both are essential to healing. It is not over when the scars heal, it is, in a way that is both good and bad, just beginning. Healing takes a long time, it teaches patience and the long view, just like dog training. Only this time, I’m the dog.
A friend told me that he had open heart surgery and it persuaded him that he was entering the last phase of his life, youth and hope were really over. He asked me how I felt, and I said it is precisely what you make of it, not one thing less and one thing more. Every day, I am learning things and doing things that I could not do before and thought I could never do.
I am working, healing, taking my pills, managing my doctors and my recovery. And I am healing, for sure. My heart gets stronger every day, and it is a miracle to have a strong and proud heart. Day by day, it will all get better, more coherent, easier to manage. I have a lot of things to be grateful for, a lot of things to be proud of. Sounds like a beginning to me, not an end. I am learning to be one of those men who knows how the world works, only the part of the world I am learning about is the inside of me.
