Bit by Bit

Here we are at seven weeks post-surgery. And while I once believed that everything would be back to normal by the six-week point (it's not!), I have nothing to complain about.

I've been able to drive now for three weeks. Got to start drinking beer again (my doctor agreed reluctantly) about two weeks ago. And as of a week ago, my formal movement restrictions have ended. No longer do I have to remember to not to lift my hands above my head, or not to bend over to pick anything up. And I no longer have to roll on my side to get out of bed. Now I spring from the bed and land nimbly on my feet. Well, maybe not. But at least I look less like a turtle trying to roll off of its back now.

I've had blessedly few complications over the past few weeks, but there have been some ups and downs.

At the end of week one I did a follow up visit with the surgical team. They covered everything on their checklist (Mostly that I was upright and breathing, I think.) and bid me goodbye. They referred me back to my internist and the cardiologist from the same practice. I saw the cardiologist first, but he didn't really seem too tuned in to post-surgical care. He knew what was supposed to happen, but I didn't get the sense that he really had much experience with patients like me. Fortunately my internist appears to be quite a cardiologist himself and he really stepped in and took control of my care. I have a long relationship with my internist and we've engaged in some doctor/patient give and take over the years, so I'm comfortable with this arrangement.

In my early post-op visits, they found some arrythmia in my heart. A common occurance, they say. The key is not to let the heart become accustomed to the improper beat. Initially the cardiologist prescribed a drug called amiodarone to regularize the beat. But he described it as "a nasty drug"--nice bedside manner! I actually got the script filled but never took it and thank goodness: the stuff stayed in your system for months and carried possible side effects including lung damage or liver damage, vision loss, taste alterations, etcetera. I dodged taking it by seeing my internist a few days after seeing the cardiologist. He didn't see any arrythmia and decided to monitor me rather than start treatment. In the weeks since, he's never changed course on that.

Another little bump came in the echocardiogram exam. They performed this one week after surgery but then called me back for additional work. Of course when they called, they gave a totally benign excuse for the call back. Then when I got in there, it became clear someone had actually seen something they were worried about--what could have been a problem with my other heart valve. This mitral valve has been perfectly healthy in the past, but according to the cardiologist attending the follow-up test, damage can occur during surgery.

During the follow-up echo, the cardiologist got a bit testy with the technician doing the exam and insisted on seeing the live picture rather than just shots selected by the tech. The live shots removed any concerns about a possible problem. Thus, the whole incident boiled down to an inexperienced technologist reporting something that might have been a problem but wasn’t. This gives an informative glimpse into the workings of medicine—and a great excuse for second opinions!

So, what’s left to complain about at week seven? I still can’t ride a bicycle, for one. That will have to wait at least a couple more weeks and given Chicago weather may really not happen again until next year. Thus my five bikes remain sidelined for now.

The prohibition on bikes gives my sternum more time to heal. Having read horror stories of people who still have problems up to two years after surgery, I don’t want to push this issue. But I have to say that every day now the sternum seems more comfortable. I can lie on my side again and routine reaching and moderate pushing movements are becoming more and more easy by the day.

What I find odd is that the incision itself is still not well healed. I suppose that given the depth and size of it (someone said it is 17 centimeters long) that I shouldn’t have expected it to heal quickly. But nearly since I left the hospital they’ve told me it didn’t need a dressing and many days that’s true. But I am finding there are times when it would be better for my clothes and bedding if I did have it covered. For the time being, I’m favoring dark t-shirts. And waiting. Some more. Impatiently.

But as a sign of real normalcy, at least in my life, I did take my first airplane trip this past weekend. This was one I couldn’t miss: delivering my oldest daughter to college in Olympia, Washington. Soon I’ll be off to Denver for GABF and then other destinations and I guess before I know it, I’ll be healed and riding bikes and all this will be a distant memory.

Won’t that be nice!

Science and Medicine

The day after surgery while still in the CVICU, I got a visit from the top surgeon, Dr. McCarthy. This guy is a rock star at Northwestern, incredible credentials, international reputation. The university hired him away from Cleveland Clinic to head their heart institute. So, even as a patient I don't get much of his time: he only stayed for a minute or two. Fortunately it was during one of the better parts of that day for me so I was able to understand what he said and ask a few questions.

During surgery they both repaired my aorta and replaced my aortic valve. The first gave the urgency to the whole project, so it was no surprise. But the second was McCarthy's call once he got in there and saw what he had to deal with.

My gimpy aortic valve had been the source of a heart "murmer" for decades and the assumption for years was that it would need to be replaced eventually. Before surgery, McCarthy held out hope that it might be repaired rather than replaced. When he looked at it in surgery, he found a tricuspid (three-leaf) valve rather than a bicuspid (two-leaf) valve that is often the source of aortic regurgitation (the technical name for my murmer). A tricuspid valve offered the possibility of repair, but alas he said that one of the leaves was misshapen and smaller than the other two. Given that, he decided to go for replacement.

Thus I'm now the proud owner of an Edwards bovine-synthetic aortic replacement valve. Part cow (moo!), part high-tech polymers. So now between the Dacron aorta and the high-tech valve, I now have about 1/16 of an artificial heart.

McCarthy's only other comment about the surgery itself was that the aortic wall was "very thin." In other words, we caught it just in time and it is a good thing I didn't vacation in Hawaii instead of having the surgery. Good to know.

I was curious about some surgical details that might relate to long-term outcomes and when McCarthy visited, I had my first chance to ask. My first question was time on the heart-lung machine. He said I was connected for 88 minutes, just less than the 90 minutes that he had predicted. Second: how many units of blood had I been transfused with? Surprisingly, none. I guess they collect and recycle your blood during surgery these days. Pretty wild.

Other than these details, Dr. McCarthy simply reassured me that everything had gone very well. And then he was gone.

* * * * *

Removal of the breathing tube (see previous post) on Tuesday night set a pattern that would continue for the next four days as various catheters, probes, monitors and infusion ports would be removed from my body in preparation for discharge. In total, I can remember 10 such items:

- Left wrist IV

- Right wrist arterial line

- Neck catheter (arterial)

- Swan (arterial monitor of heart function inserted in the neck catheter)

- Urine catheter

- Major chest fluids drain (connected to a large collection vessel that was kept under the bed)

- Minor chest fluids drain (connected to a plastic bulb)

- Pacemaker wires (directly touching heart), and the pacemaker itself--the size of a box of rice!

- Incision painkiller infusion lines (two, very fine), attached to a portable infusion pump.

- Another IV in my left arm (they needed a bigger line for some test right before discharge)

I was also connected to a full set of EKG sensors with a radio-transmission box so that no matter where I went on the floor or in the hospital they could chart my every heartbeat.

Each item had a removal point on the recovery timeline but criteria had to be met before they could actually come out. The details aren't worth discussing, but the effects of all this hardware could be vexing and occasionally humorous. I felt like some half-finished Ragedy Andy doll with bits of stuffing, yarn and accessories clinging to me by threads.

My first morning after surgery, while still in the CVICU, they wanted me out of bed and sitting in a chair. I didn't much feel like it, but that was the program. Overall it turned out to be a pretty rough day. My blood pressure seemed to be swinging around--low at one point and high later--and that left my head spinning. As a result, I was pretty oblivious to my visitors, the nurses and most other activity in the room, which turns out to have been a good thing given other family events that day.

Fortunately, by the end of Wednesday--less than 24-hours after I regained consciousness from surgery, they had me stabilized and ready for transfer to the "step-down" unit--a regular ward floor. I was off to the next phase of recovery.

The Day They Stopped My Heart

The day before surgery, they didn't call until 4:56 pm to tell me when to report for pre-op the next day. The time I drew was late: I was to be at the hospital between 10 and 10:30 the next morning.

I was allowed no food or drink after midnight, so the main effect of the later start time was hunger and thirst during the pre-op rituals. No big deal there.

At the hospital, we found out how well Northwestern does at managing family contact with the patient. Someone was with me nearly the whole time as we prepared for surgery. When it was time to go, family walked with me next to the gurney right up to the entrance of the surgical suite. After one last good-luck kiss, they rolled me in a little before 1 pm and I was met by the anesthesiologist.

The anesthesiologist said she was going to give me a "general cocktail" to relax me and started an infusion in the IV at my wrist. The last thing I remember is making some quip about how she was welcome to make mine a martini.

* * * * *

Many feel the most peaceful death would come during sleep. Thus I faced the actual surgery with a resigned sort of peace. The doctor gave only a "one percent" chance of death during surgery attributable to anesthesia, heart-lung machine failure and so forth. I must admit that during the last few hours before surgery, I had started to wonder just how they would re-awaken my heart after shutting it down for 90-minutes to do the actual repairs. I was sure they had a long track record of success, but it was one of those details I would have dug into if I'd had a few more days to prepare. In any case, I figured that if anything went terribly wrong during surgery, I would never know and my last conscious moments would have been peaceful.

The fight, I knew, would start when I awoke. After surgery, it would require tremendous energy and will to endure the pain, shake off the effects of anesthesia and re-awaken and control my various subdued body systems.

Fortunately, I had done all this once before. As a teenager I'd had major surgery for a kidney-related matter. That adventure decades ago looked easy beforehand so it had been quite a shock to me when I woke up after surgery and realized what a sad state I was in. (My father recalls my first words afterward being "It hurts!") Of course medicine has changed a great deal in the thirty-some-odd years since then and Northwestern is a cutting edge teaching hospital. Both factors would work in my favor.

* * * * *

I awoke in a spacious corner room of the cardiovascular intensive care unit--"the CVICU." My first real thought was: "This isn't so bad."

Mostly, I wasn't in a great deal of pain. Some things were numb, I could tell, but it wasn't a huge area. I still felt whole, still felt the integrity of my torso. That seemed like a very good sign.

Then I quickly realized I had missed a great deal between my quip about martinis and this no-nonesense recovery suite. I remembered no shaving, no scrubbing, no coverings or probes. I remember nothing of the surgical room itself: no nurses, no bright lights, no team of masked professionals surrounding me. And I had no vision of my green-gowned doctor holding sapling-like gloved hands vertically in front of him as he spoke words of reassurance.

Every detail of what had transpired from the entry foyer of the surgical suite to this ICU room had vanished. And that, I decided, was just fine.

* * * * *

I awoke in the ICU at about 10 pm, I think. One nurse (Stephanie) attended me virtually full-time, taking notes at her computer desk in the corner and dashing around the room for other ministrations. She soon told me that my family had visited soon after I arrived but that they had all gone home for the evening.

Those first few hours were challenging, thanks mostly to my breathing tube. When you are forced to cede the most basic of instincts to a machine, it isn't fun. And then fluids flow in places that they don't normally go. That's probably enough said on that topic. Stephanie kept telling me to relax. Then she helpfully pointed out that my wrists were restrained so I should stop trying to get my hands up there to pull the tube out myself. Then she told me to relax some more. I eventually found ways to cope with the worst sensations, did what was required to demonstrate independent breathing and finally, sometime around midnight, got the breathing tube removed.

So day 1 ended happily. I'd survived. I'd rid myself of the breathing tube and was breathing on my own. Life was looking pretty good!

Adjusting & Assessing

The onslaught of paperwork, appointments and details started the moment I said "yes" to the August 5 surgery date. Even though it was already 3:30 in the afternoon, Janice wanted me to hit the labs for blood work and an x-ray before leaving. I couldn't do it. The commitment for surgery was made, but I needed time to process. Time to second-guess. Time to worry. Time to really commit within my own mind to the path that I'd just agreed to.

Thursday and Friday were a whirlwind. I returned to the hospital for labs and the x-ray in the morning and I managed to get an appointment with my dentist in the afternoon for a cleaning and surgical endorsement. Both were preps for the ultimate surgery. Periodontal infections can lead to infection in the heart, especially with artificial valves. So the surgical team wanted to make sure that I had a clean bill of health from my dentist before moving forward.

Friday brought something of a warm up for the main event in the form of an angiogram. Here they insert a catheter in the femoral artery in your groin so that they can inject dye near the heart and inspect your cardiac arteries for blockages. They can also alleviate blockages by inserting stents into those arteries if need be--a procedure that has eliminated most bypass surgery. In my case, this was a pre-surgical precaution: if there were blockages and weakness in the heart, they wanted to know that in advance. Of course for me, if they found blockages, they'd probably just slap a bypass in while they had me open for the aorta/valve repair. (A two-for-one-deal, I guess.)

Because it is an invasive procedure, they prepare the patient in much the same way as they do for surgery: gown, shaving, IV line--all done in a special hospital-room-for-the-day. When it was time for the procedure, I made the trip flat on my back in bed, rolled down the hall and up the elevator. Afterwards, there were several hours of recovery--not from anything related to the heart, but to make sure that the puncture to the femoral artery closed up and wouldn't start bleeding uncontrollably.

Overall I fared well, and apparently my cardiac arteries passed the test. I seem to remember the doctor (not McCarthy, but a cardiology Fellow, Dr. Rapp) saying that everything looked fine while I was in the cath lab, although I was somewhat sedated at the time. Unfortunately when it came time for discharge, Dr. Rapp wasn't available so I didn't really get a full report on the state of my arteries.

I arrived home Friday night relieved. Part of the relief was that I had cleared all the necessary hurdles to proceed with surgery on Tuesday. But I was also relieved that the whirlwind of office visits and medical practitioners of every stripe was scheduled for a lull. From Tuesday to Friday, I was poked, prodded and probed from my teeth to my toes. I know my way around hospitals and I've certainly found that both the facilities and the people are as nice as they can be. But despite that, I was well ready for a rest and a few days that didn't involve anyone in a cotton garment with "Northwestern" embroidered above the pocket.

New Plans

Wednesday, July 30th

The surgeon is Dr. Patrick McCarthy. Nominally, he is chief of the division of cardiothoracic surgery at Northwestern Memorial Hospital. He trained at Mayo Clinic and Stanford University, then practiced at Cleveland Clinic before being hired away by Northwestern. His list of accolades and awards is impressive. If you want, you can read more about him here. Bottom line: he's among the best in the world at heart surgery, specifically valve repair.

I met with Dr. McCarthy on Wednesday afternoon--barely 24-hours after the aborted stress echo. He explained everything and addressed the three pages of questions I had for him. Throughout, he was confident and reassuring about the probable outcome. He was also clear about the risks of ignoring my condition and said that until surgery, I should lift no more than 20 pounds, avoid exercise and even sex. With all that off the table (!) I must say that my motivation to get fixed up was pretty strong. Of course he has a busy schedule--and a vacation planned for later in August. His assistant, Janice, checked the schedule and they decided they could work me in on Tuesday. August 5th--less than a week away. In the meantime, I needed to have a angiogram, a dental exam, blood work and a chest x-ray. Suddenly things were moving very fast.

Once they presented me with the date they waited for a commitment from me to move forward. I had already decided that I didn't want to go to Hawaii for what had been planned as an active vacation with the possibility of a catastrophic aortic rupture hanging over my head. But I had hoped for another week--even a few more days--to come to grips with the storm I was getting ready to weather. A little more time to process, to adjust to this new reality would be nice.

But it was not to be. In less time than some people spend deciding on breakfast, I was scheduled for open heart surgery on August 5.

What a Tuesday!

Tuesday, July 29.

I took it for granted that the annual stress echocardiogram to assess the condition of my heart and it's gimpy valve would be like all the others I'd had: uneventful. I was wrong.

For starters, there was a new crew at the lab. Different technician, an added exercise physiologist and the soft-spoken Indian cardiologist whose mannerisms I'd come to understand was away. No worries, the new team all seemed fine.

The exam started like normal: I waved off the gown, pulled off my shirt and jumped onto the examining table. Once wired up to the EKG, I assumed the position to have the gel-covered probe slid around my chest as the tech stared intently at her screen. I was in a good mood and kept thinking of jokes I'd be cracking if she weren't so focused on her work.

When it came time to exercise, the tech said she wanted to check one thing with the cardiologist before we started. Soon the doctor was in the room peering at the recorded images and quizzing the tech about her measurements. Then the tech from next door came in and repeated the key exam. There was clearly something they didn't like and soon the cardiologist told me: the size of the aorta bothered them.

The cardiologist put the test on hold to talk to my internist, Dr. Havey--who was officed down the hall. He came back to report that they'd decided I should skip the stress part of the exam. Instead, I was to see Havey about scheduling a CT scan to confirm the measurements of the echocardiogram.

I figured the CT would take a few weeks to schedule, but when I asked they said I should have it done "today or tomorrow." Things had definitely taken on a sense of immediacy that I hadn't seen around this issue before.

The CT scan started an hour later and extended my day at Northwestern to nearly 5 pm--I'd lost half a day that I hadn't planned on. But despite the gentle warnings that the echo readings--if confirmed by the CT--"weren't something to mess around with" as Havey had said, I figured that at worst I would face surgery sometime after my vacation in Hawaii. After all, I was exercising regularly and vigorously and had ridden my unicycle for an hour and a half just the night before. How bad off could I be?

That night, Havey called me, not once but twice. We missed connecting the first time, but I picked up the second time--at 9:30 pm--and he laid it out. The aorta was hazardously enlarged with some real chance of rupture during my regular activities. He had scheduled me to meet with the cardiac surgeon the next day and, he said, the surgeon did not think it wise for me to proceed with the Hawaii trip. With an aorta swollen as much as mine, the chances of rupture were 10-15 percent. Were it to rupture, the consequences would obviously be dire.

How This Started

In about 1993, I changed doctors and started seeing Dr. Robert Havey at Northwestern Medical Associates in Chicago. In one of my early visits, he mentioned that I had a heart murmur and went on to explain that it was from a heart valve that wasn't exactly working properly.

We started a program of monitoring with echocardiograms and stress echocardiograms. These tests use ultrasound to image the heart in much the same way that expectant parents take a look at their unborn child.

It soon emerged that one of the key criteria of how things were going was the size of my heart and the size of my aorta. While many with a bad heart valve have "MVP" or mitral valve prolapse, my issue was on the other side of the heart, at the aortic valve. My condition was known as aortic regurgitation or aortic insufficiency.

In 1994 when we did the first echocardiogram, my aorta was measured at 4.4 centimeters in diameter--apparently well within normal. Over the years, things progressed slowly. Havey told me that eventually I'd need to have the valve replaced and the test would allow us to know when it was time to do so.

Last summer (2007), I wasn't able to do a stress echo (where you exercise on a treadmill before they measure the size of the heart by ultrasound) as I was on crutches trying to heal a bone bruise in my left ankle. But measurements by regular echocardiogram showed the aorta to be 4.9 cm. At this size, it was approaching the range where surgical intervention would be indicated, 5.1-5.5 cm.

Fast forward to this year: I knew I was due for another echocardiogram, but didn't think there was much urgency. After all, we had been monitoring this condition for more than a dozen years and it seemed to progress slowly. When summer rolled around, I knew that I really should get in and get the test done again. As had become our habit, I called Dr. Havey's office to schedule the echo in advance of my meeting with him so that he could report the results to me when we got together. Since I'd been traveling so much this summer, the echo date wound up coming between two trips: Durango, CO the third week of July and a trip to Hawaii scheduled to begin on August 3.

That set up the week just past--details of which I'll put in subsequent posts.