First, an explanation for why this post exists. In the days and weeks leading up to my aortic valve and root replacement surgery I did a lot of reading online. While I found a wealth of knowledge and information about what would happen during my surgery, and even some clinical assessments of what recovery would be like, I found shockingly little that offered a practical, regular language look at what it might be like to recover from surgery. I realize part of that is because everyone's experiences will be vastly different and there is no universal descriptor that says "here's what recovering from heart surgery is going to feel like for you."
That said, it still would have been nice to hear what other people's experiences have been, just to have some context. Maybe even just to feel less alone. So I am writing this in the hopes that at some point, someone like me that is about to experience open heart surgery finds this and is at least a little comforted by what I can share. It's also a little cathartic to stop and take stock, to be able to see where I've come already in just a few weeks. So, this is a little bit for you and a little bit for me. Let's share.
I will be updating this periodically as I continue to heal and ride the roller coaster of healing. I warn you in advance, it's going to be long.
One last note, if you are that person who is someday facing the prospect of heart surgery there is only one thing I can say for certain: there will be countless things that go dramatically different (maybe better, maybe worse) for you than they did for me. That said, as I write this 2 weeks out from surgery, I don't regret a thing. There was a ticking time bomb in my chest, and now there's not. It's a lot easier to get through the days on that fact alone.
I am a 38-year-old, non-smoker. I am on the upper end of normal weight for my age and height. I am physically active. I had no other history of major illness, and my condition was a result of good old fashioned, red blooded genetics.
I suffered from a bicuspid aortic valve with mild regurgitation. I also had an ascending aortic aneurysm, just under 5cm. In the days approaching surgery it became evident that my aneurysm was unstable and had grown .5cm at the root in only five months.
On July 18 I underwent an aortic valve and root replacement. I was given a mechanical valve and had part of my aorta replaced. The surgery went very smoothly with no complications, and lasted roughly six and a half hours.
Have you ever stayed in a hotel, and when you first woke up in the morning you were disoriented and a little confused by your surroundings. Still bleary from sleep you can't place exactly what's wrong, but it's definitely something and you should definitely do something about it. That's sort of what it was like waking up in the ICU after the surgery. My brain gathered itself together in a very linear fashion stopping to recognize each discreet element of my situation one at a time. Even as it comprehended that there was a tube running down my throat it still couldn't immediately connect the ideas into the thought "I'm in the hospital and I just had surgery". I wasn't in any kind of panic exactly, and as the sounds and feeling began to coalesce, the realization of where I was and why materialized like someone walking out of a thick fog. There was no a-ha! There was just a dreamy, sleepy march toward cognition.
It did not hurt waking up. At least not the way I would have thought. The intubation tube was uncomfortable, mostly in my mouth and at the back of my throat. I was catastrophically thirsty, and when some eventually put a damp something in mouth it was fantastic.
I kept forgetting to breathe, and when I did I was punished with a series of harsh noises from a nearby machine. I don't remember my nurses and attendants, only that there was constant encouragement to breathe, and it took an act of will and thought to do so. It was like the breathing part of my brain was still asleep, so now I was going to have to do all the work.
Time doesn't make any sense in describing the long slow experience of waking up. I'm sure I was fading in and out of consciousness at a pretty significant rate. My wife was there in a time that seemed not a lot later, and then she would be gone, and then there would be a noise and I'd realize I'd forgotten to keep breathing again, and so it went. I eventually made the mistake of asking that my intubation tube be readjusted, and when it was moved it activated my gag reflex and I convulsed in the bed for a few minutes. I do remember that did not feel good.
After what seemed like maybe a half hour to me, but what was really more like three or four hours I was told the tube was coming out. I took a deep breath (apparently I was doing a good job now of not forgetting to breathe nearly so much) and coughed as the plastic was extruded. What's it like? Over the few days in the hospital you are going to have a lot of things pulled out of your body, and in every single case the best descriptor of the experience is "weird". It felt really weird, like coughing up a ball of phlegm the size of a golf ball, except that someone else is also pulling while you cough. There is a weird, wet pressure in a part of your body that you've never felt before, and then its out.
I'd like to say that having the tube out was some kind of massive relief, but I'm pretty sure I fell immediately back to sleep.
I'm not going to detail the experience of staying in the ICU to any great detail, except to say that I've never felt better attended to and cared about by strangers than I did that night.
I shared a large room with another person who had just undergone some kind of cardiac surgery. For the sake of privacy, I'll call my roommate Walter. I never spoke to Walter because his intubation tube did not come out during my entire day long stay in the ICU, but I know that Walter was having a much more difficult time of it than I was. By the time I was getting ready to move to a regular room, I was feeling guilty about the constant praise and enthusiasm of my care team, because people kept describing my initial recovery as so positive and I knew that on the other side of the curtain was a conscious man who was not nearly so lucky. No one ever sounded the same on Walter's side. It was always much more serious there.
I have the feeling that Walter is a person I will think about often for months or years to come. I hope he began to pull through.
I did not sleep well the first night, in part because nurses checked on me with some pretty impressive regularity, but also because I was dealing with some nausea and discomfort. Frequently when I would drift off, I would have the sense that I'd forgotten to keep breathing again and I'd wake up gasping. It was nearly 2 days before the act of breathing felt reliably and consistently voluntary again. The worst part, though, was how thirsty I was. I wanted to drink down a giant glass of water like I'd just been out doing yard work under a hot sun for a few hours, and the best I could get was some ice chips and eventually a small sip of water every 20 minutes or so. They were taking it particularly slow with me given the nausea -- I do not have a cast iron stomach -- so liquid was doled out only in the most conservative measures.
My biggest question before the surgery really was all about the pain. I'd never experienced a broken bone or surgery before, so I had no idea what that might be like to recover from. I was doing a good job of imagining the worst though, and I am happy to say that for me, and again I have no idea how true this holds for others, the pain was far far less than what I'd feared. That first night, I basically felt as bad as I might if I had a nasty flu (though in a very different way).
For me the pain that I did experience has never been in my incision. For as angry as the thing looks, it's really been more of a nerve dead zone than anything else so far. Even the fracture in my sternum has been relatively quiet, and the only pain I've experienced associated with that have been when I needed to cough or sneeze. Side note: at some point after your surgery you will have your first sneeze -- it will not be fun.
That said, the chest tubes that were poking through my abdomen and running up into my chest cavity ached pretty regularly. Again not the incisions, but the presence of these foreign conduits in heretofore serene and unsoiled parts of my person, it just pressed in uncomfortable places and uncomfortable ways. It was hard to get comfortable. Eventually a soreness in my shoulders and back also materialized. My pain was less a sharp, debilitating thing than it was a wandering deep-ache companion that seemed to leisurely make its way throughout my body. That said in my time at the hospital, whenever the nurses would ask me to rate my pain on a scale of 1 to 10 (1 being no pain and 10 being the worst imaginable pain) I never felt compelled to report higher than a 4.
I will also say that if I had had no idea what procedure had been done and I was asked just based on the scale and shape of the pain, I never would have guessed heart surgery.
What I Looked Like:
This is what I looked like the night of the surgery:
Not my best picture ever taken, but as you can see I’m awake, I’m aware and I’m not writhing in agony. The tube taped to my forehead circles back down behind my ear and is an arterial line going into my neck. No, I was not awake when they put that in. You can also see the oxygen mask next to my head that I wore for a while after the intubation tube was removed. That had been set aside in favor of those nasal plugs. All those other tubes near my head, well they snake into an impossible number of places. You can’t see the other arterial line going into my wrist (I still have a bruise from that one), the IV line going into my hand, the three chest tubes plugged into my upper abdomen or, obviously, the catheter. I was also wearing a half dozen sensors monitoring my heart rate as well as a blood pressure cuff that periodically puffed into life.
Basically you could describe my stay in the hospital as an extended session of slowly being unplugged from machines. Every other day one of those things would come off or out.
My neck is orange from the betadine that was painted over me from head to foot before surgery. That stuff is not easy to get off by the way. I’m a little puffier in the face than normal as a result of relatively normal post-op fluid retention, and a lot of the time you are in the hospital will be spent having people monitor how well and how quickly all that extra fluid is coming out of your body.
All in all, though, I think I look pretty good for someone six hours out of heart surgery.
The First Week:
It’s exhausting. Every little movement, every little effort is an extraordinary act of will. On the first night when they said they were going to sit me up on the side of the bed, I thought they must be insane. Certainly the very atoms of my body would lose cohesion and spill out onto the floor. It hurt to roll over and sit up. Then the room spun. Then I was sick. It was not my finest moment, but I still sat up for about five minutes. I was able to lift my head and even try out my Incentive Spirometer (a breathing test that you will do what seems like a thousand times over the course of your recovery … that might not be an exaggeration).
Later that night I stood up and even sat in a chair for nearly a half hour. There is constant encouragement and support from nurses, but an unyielding stubbornness behind it. You _will_ get up. You _will_ walk. You _will_ eat this. You _will_ move. And you do it, even if you don’t want to, because it actually helps, but also because it’s reassuring to discover that you will becomes you can. You _can_ still do all these things and more.
The first night that I got up to use the bathroom without having to call a nurse, well I might as well have won a gold medal at the olympics.
After a day in the ICU I was moved to more traditional hospital quarters. I was lucky (and, ok, my nurses liked me and probably went just a little further on my behalf) and secured a private room even though the cardiac wing was quite full. There’s a lesson there: you want the nurses on your side. I don’t doubt for a moment that even if my nurses despised me I still would have gotten excellent care, but I’m willing to bet that things go just a little bit smoother for the patients that remember their names and appreciate the work they are doing. A nurse on your side is not a bad thing to have in the hospital.
Anyway, my own room.
Though the attendance did not feel quite as imperative as it did in the ICU, it’s easy to feel like your room is Grand Central Station. If you think you’re just going to spend that week in bed watching tv and dozing leisurely, then you are in for a surprise. Aside from having vitals checked every 2 or 3 hours, there was also cardiac rehab twice a day, encouragement to sit or walk regularly, information session, required reading or videos, volunteers, doctors, housekeeping, nurse's assistants, food services and a host of other people checking in, checking up, writing things down and monitoring.
Even in the dead of night, there is a nurse or nurse's assistant in and out of the room taking your temp or blood pressure every couple of hours.
As for the recovery itself, I felt a little better every day. Even as I was slowly weened off the really good pain meds, I hurt a little less each and every day, and I could do a little more. By Friday (my surgery had been on Monday) I was walking unaided to my Cardiac Rehab appointments, getting on a treadmill for 10 minutes, walking some supervised stairs and then walking back to my room. Then I would fall asleep for a couple of hours because it’s really exhausting doing those things. But, it’s also rewarding because four days earlier just sitting on the side of the bed seemed like a Herculean task.
Even though my nausea passed by the third day, I had no appetite. One of the hardest efforts I made was in choking down regular meals. At first I could do little more than half a banana and a few spoonfulls of Cheerios. Even by the end of the week I’d order achingly small meals and leave half or more on the plate. The bitter irony is that for patients facing a restricted diet, the nurses will let you have anything that will make you eat during this time, but the moment your appetite comes back and you start actually wanting the food you won’t be allowed to have it anymore.
It wasn’t until the third day in the hospital that I finally saw my scar. That’s a moment I won’t forget.
I knew it was going to be there obviously, and I knew what I had been through in a very logical fashion, but not until I actually saw it reflected in the mirror did I really register that “yes, this had actually happened to me.” It’s a scary thing to see, this separation in the center of yourself. A deep red line from just below your neck down to the top of your abdomen where you have been cut and parted. My chest was still tinged orange from the betadine and there was a bandage over my midsection where the chest tubes waited to be extracted, and my shaven chest was peppered with the long whiskers of hairs that eventually will disguise my scar. It was another person’s chest in the mirror. I couldn’t look at it for long.
As I mentioned before a lot of the stay in the hospital seems to revolve around getting unplugged from things. When something is finally pulled from your body, it’s a disturbing success because it means it’s one less piece of medical support you need. The arterial lines in my neck and wrist didn’t really hurt much when removed, but they obviously required a lot of attention from a bleeding perspective. There were some pacemaker wires in my chest that had been used during the surgery and left for a few days, just in case I guess. Having those tugged out was really odd, like someone had left some speaker wire in my rib and was finally pulling it out like it was being pulled out of sheetrock. It was a weird friction-y feeling, but it didn’t hurt.
The chest tubes were the strangest experience of my stay though, and again I wouldn’t describe their removal as painful -- though I’ve heard reports that it very much can hurt. That said, it’s a feeling I never want to have again. I genuinely can’t express or explain what it felt like to have them removed. They are taken out basically by having someone cut off the bandage and give the tubes a really firm pull. You will be glad when it’s over, not just because you don’t have to worry about it anymore, but because it’s not until the chest tubes come out that you realize how bad they made you feel.
I have had no single moment in my recovery where I experienced as dramatic an immediate change as when I had my chest tubes taken out. Immediately I felt much much better. Focus on that part of it.
There isn’t much better than being told that you are cleared for discharge. When the last IVs come out and the last monitors come off there is a sense of freedom and success. Or at least, there was for me. It was only when I put on my own shirt and my own shoes again for the first time that I really began to feel like me again.
Getting in my car, my wife in the driver seat, was something I had been looking forward to since the first night in the ICU, and it wasn’t until roughly halfway back from the hospital that I realized I vaguely missed the certainty of the monitoring and the confidence of having someone in the know right at the press of a button. By the time I was actually home I was happy, but nervous. It was hard not to feel like now I was on my own.
That eased up a bit as I sat in my chair, looked out my own window and felt the familiar comfort of just being home settle over me.
What I Didn't Expect:
Over the course of my first week of convalescence there were a number of things that I was entirely unprepared to deal with. In the weeks leading up to the surgery I gave a great deal of thought to the potential pain, exhaustion and weakness to come. It just kind of dominated my thoughts, and so it never really occurred to me that there would be consequences to the surgery that I simply hadn’t expected. These included:
1) The Tell Tale Heart -- Here’s the thing, I hear my heart loud and clear most of the time now. To me it sounds like that old ticker is kicking around inside a bass drum, to the point that sometimes I just have to stop and ask my wife if she can hear my heart. If I’m sitting even relatively quietly I can easily check my pulse just by listening to the thumping that reverberates in my body. I am almost constantly aware of my heartbeat, paticularly and most troublingly when I’m trying to go to sleep. On asking my doctor what exactly the hell is going on with my mule-kick heartbeat, he explained that this is not a terribly uncommon phenomenon.
For most of my life my heart has been very securely seated in the perfect spot, just the right size and shape for it to beat, and of course after 38 years I’ve gotten very used to the harmonics of that arrangement. Now that arrangement is different. During the surgery it’s necessary to make some extra room, so now my heart is in a new, slightly roomier spot. It has upgraded from a tight compact model to the mid-size sedan of places where hearts sit in chests. As a result of the changes my heart is echoing in my body in a very different way and so I get to hear the thumping beat of my freshly mended organ.
Additionally, since I have a mechanical valve, I can also hear the click of it working with each pulsing beat.
2) Bizarre Sleeping Patterns -- It was hard to notice in the hospital, where odd sleeping schedules are sort of mandated, but once I was home it was clear that waking up every 3 or 4 hours was just a pattern. And sometimes I’d just wake up in the middle of the night and that was it, I was awake.
Again, this is not at all uncommon. Even if there isn’t a lot of pain, unusual sleeping patterns are a frequent and somewhat disturbing problem. Mostly there is no choice but to just kind of roll with it and rest when the feeling overtakes you. But, the fact is that unexpected item #2 is really compounded with unexpected item #3.
3) Nightmares -- I’ve generally never been troubled by dreams, but since having my surgery almost every night I’ve had some kind of traumatic nightmare. Over the first few days it was really disturbing, in part because even before I fell asleep, just when I closed my eyes, I would have these sort of horrific images pop into my head out of nowhere.
And those images would follow me right down into sleep, where during any given three or four hour stretch the odds of some kind of frightening, violent or downright creepy dream were better than a coin flip. Or worse as the case may be.
A few weeks in and it’s started to get better, but in a lot of ways this was one of the hardest things to deal with in the aftermath of the surgery.
4) How Not Bad It Is Overall: I admit freely that my case has been blessedly ideal. I’ve had no serious complications to deal with. I had an amazing surgical team with plenty of time to prepare. I had no other significant heart disease or illness. I’m under 40 and a healthy non-smoker. My case is sort of what heart surgeons wish for when they blow out their birthday candle.
I have a feeling my old ICU-mate Walter would not have this in his list.
All that said, this has been something I’ve felt at every step like I can overcome. Yeah, it’s frequently pretty damn challenging, and there are plenty of moments that I don’t want to do the things I know I need to do to stay on this healing path, but what I expected before the surgery was to feel too often like I couldn’t do it, whatever it was. That hasn’t happened. My recovery has not been superhuman or the kind of test I feel like withering in front of.
I wish I could go back to a week before the surgery and tell myself, “stop worrying, you’ve got this thing covered.”
The thing I heard about more than anything else leading up to the surgery was “the pillow”. The pillow is apparently a pretty big deal for a lot of people, and certainly for the first week or two it was a constant companion. Mine was a big red heart pillow provided by the hospital -- it was waiting for me in my room when I arrived after leaving the ICU -- and it is used to splint the fracture in the sternum whenever you need to move or breathe in a way that might otherwise cause trouble. It’s also secretly a tactile reminder not to use your hands when sitting or standing.
Hugging the pillow is just something you are required to do, and wherever you go so too goes the pillow for the first week. And, trust me, there are times you are going to want it, for example whenever you cough. One of the favorite things doctors and nurses like to get you to do following heart surgery is take big breaths and cough. Both of these hellish tasks are made marginally better by squeezing the pillow to your chest to keep your sternum from moving around.
At this point I’ve mostly abandoned my pillow, though I do still use it as a barrier between my chest and the seat belt when I’m in the car. That pillow got me through some rough moments though, and strange as it may seem I have a weird sort of fondness for my good old heart pillow. Fact is, it made a lot of things that kind of sucked not suck nearly so much, and despite the reckless anthropomorphizing I can’t help but be grateful.
The Second Week: