A Free Half Litre!

Somehow between going to bed last night and waking up this morning I gained half a litre of air capacity. Same quantity as when my left lung seemed to 'unpeel', and I feel less resistance in my right lung now. That's 3.5L now, and getting back to my original 4.5L doesn't seem so unattainable anymore.

Three Weeks

 

Well, three weeks ago yesterday was the day of my surgery. I feel fine, though not back to my old self yet, of course. At this point my recovery basically looks like I'm lazing around the house and not contributing much. I'm spending easily more than an hour a day walking around the neighbourhood, I'm sleeping 8-9 hours a night plus a nap or two, and I'm not feeling bad. Here's a bit of an inventory of the different aspects of my recovery.

Breathing - I've been holding steady at about three litres for several days now. I had been at 2.5, but then I was reading in bed when I suddenly felt what I can only describe as a sensation of unpeeling in my left lung, and all of a sudden I found I had an extra half litre. Still waiting for my right lung to do the same, I can feel it trying to pull open when I take a big inhalation, but no luck yet. Patience!

Drain holes - The two holes below my sternum from the drain tubes are not a worry at all. The first couple of days home the scab would crack and bleed, so I decided to put some polysporin and a tegaderm on to keep them moist. That worked great for a few days, then I found that the surrounding skin was getting irritated by the moisture, so I thought I'd take a little break from the bandages. But things sealed up just fine, and I haven't gone back to putting any sort of dressing on. I found that the scabs would pull a bit (being on soft tissue only), and the scab would thicken from below as it bled or oozed imperceptibly. Not a problem, but the scabs got so thick they were catching on my shirt, and I was worried they would pull off. So I used a nail clipper and just trimmed those things down nice and thin, and there's been no problem at all since.

Numbness - A big incision always comes with some numbness after, at least in my experience. I had hernia surgery when I was younger, and there was an area of numbness around one end of the incision that gradually regained feeling over the following year or two. I have some reduced sensation near the bottom of my incision from this surgery, but I'm used to it now and I'm sure it'll creep back towards normal over the next couple of years.

Energy - I definitely feel more like myself now than I have since the surgery. I have no problems going for two 40-minute walks a day, though I do usually feel like a good sit-down or nap afterwards. I've never felt like walking or stairs or anything has been too much for me. I tend to settle into bed around 8:00, a while after my two-year-old goes to bed, and read for a good while before getting to sleep at 9:30 or 10:00. The little guy is always up before 7:00, so the whole house is. 

Incision - A little less than half of the incision scab has peeled away, and I was shocked at how little scarring there is underneath. I'm sure it'll be visible if not prominent when all is said and done, but it's certainly not the badass looking memento mori that I was expecting. 

Appetite - I have always been hungry at every moment of my life, and now is no exception. I've been craving protein very strongly, so we went out for sushi. There is nothing more delicious than eating the food that your body is desperately craving, and boy oh boy was that a good meal. I can't cook because I can't handle the hardware without hurting myself, so my wife has been taking over what is usually something I do most of, and she has been very accommodating of my cravings.

And honestly I'm at a loss for what else to recap at this point. Feel free to make requests. 

Oh, I had been waiting to watch 'The Expanse' until my convalescence, and now that I'm well and truly into it I can say boy oh boy is it ever good! Highly recommended. 

More when there's anything new.

 

Pain

Pain is notoriously unquantifiable, and difficult to describe. So when I was getting ready to go in for my surgery I wasn't sure what to expect, which was tough for a planning-type person like me. I'm sure different folks have very different experiences, but I feel like my pain management at the hospital was so good as to be completely invisible to me. I knew at all times that I could ask for more pain relief, but I never once considered it, there was no hint of a need. 

I recall regularly taking two extra-strength tylenol while in hospital. I’m sure that heavier drugs were used on me, but I don’t recall (perhaps due to the effects of those very drugs). Certainly, by the last day or two in the hospital I felt pretty lucid, and it was just tylenol for me. 

In my first couple of days at home I quickly tapered down to no painkillers at all: not to be a hero (that’s dumb), but because I simply didn’t have any pain. Now, I’ve taken a regular strength tylenol once or twice because of muscle soreness in my upper back (can’t stretch it out, of course), but that has been it.

This has been pleasant surprise overall, as what had been a matter of some dread pre-op has turned out to be a complete non-issue. Hooray!

All that said, I know that some people use strong painkillers and chemical drugs for off-label purposes. That's problematic for lots of reasons, but the one to be highlighted here is that when (not that farfetched!) you have a major medical event you definitely, definitely want those drugs to work as intended. 

Sleep

UPDATE June 6: Before I settled on sleeping in the chair I went ahead and ordered a big wedge pillow, which arrived yesterday. And boy oh boy, it is way better than sleeping in a chair! The comfort of actually being under the covers in a bed is so welcome. And the wedge is tall enough that I can easily sit straight up and get out of bed myself, a miracle! 

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Sleep is the most important part of recovery, I think. You never sleep great in the hospital with so much going on all around you at all times, not to mention being so early in the process that your body is still figuring out what is going on. When you get home and into your own routine, then it's super important to find the best way you can to get the most high-quality sleep.

First, remember: I cannot use my arms to adjust myself in bed or get out of bed. 

My first couple of nights at home were not great. I slept relatively well in the hospital bed, which had an automatic top half tilt adjustment. I found it best to lie mostly flat, but waking up in the middle of the night I would tilt myself up and have a drink of water, or whatever. Here at home, no such fancy bed. I thought that a similar flat position would probably be fine, or wedging myself up with some pillows. I found that if I started sitting up mostly, I was able to wiggle my way down to flat, but not the other way around. Well, this turned out to really not work for me. I would inevitably find myself flat on my back, super sore, and unable to make any kind of adjustment to my position by myself. 

One other odd thing: night sweats. Apparently this is a common aftereffect of anaesthesia, but it's super super gross to wake up in cold, wet sheets and have no way of moving yourself. 

But after a couple of nights of this, I reconsidered a chair that I had previously ruled out of my recovery plans: the classic Ikea poang chair. I've always found it incredibly comfortable, it's got a bit of spring to it, but it's too deep and reclined for me to get out of without using my arms, properties which also make it very comfortable to sleep in. And so it proved, as my sleep in that chair has been excellent, and the night sweats immediately stopped, either by coincidence or not. Getting out of the chair requires a helper, but it's as simple as tipping the chair forwards until I'm able to just stand right up. Easy!

It also has the happy consequence of freeing up the bed, so my wife can sleep there now. Quality of life for the person looking after you is a very important consideration. I'm relying on Kathryn for pretty much everything, so anything that makes things easier for her is good for everyone.

Post-op days 1-4

Day 1 post-op

I remember my wife Kathryn being there when I was being moved from the ICU to a regular recovery ward, along with my various tubes and attached gadgets. When I got there I was baffled by the other folks in my room just talking and talking. On the phone, to visiting family who hung around for a long time, and to any nurse they could lasso into a conversation. How were they doing more than the bare minimum of speaking only when necessary and just enduring? Didn't make sense to me. Presumably they were all at a similar point in the process as I was? I don't remember much from this day, other than the general impression that there were still a lot of drugs in my system and that this was a harder day to get through than operation day.

 

Day 2 post-op

This started off as a tough day. While the fog of the surgery-day drugs was still quite strong, I was more aware than previous days. This was the first day I saw the physiotherapist, who got me on the incentive spirometer, and I realized that my maximum inhalation was about half a litre. Yikes. We did a series of exercises, after which I could immediately get a full litre, so that was great motivation to get on those exercises every chance I got. 

During surgery your lungs just get all smooshed up, compressed by the business that's happening adjacent to them. The alveoli collapse and stick closed, so no air will get into them. Of course you lose flexibility and mobility of your ribcage from the operation, but that's a long-term project. The immediate goal is to literally open up your lungs again so they can fill what space they have available to them.

The main breathing exercise to achieve this is a simple series of three stacked breaths: a full inhalation, hold for a count of three, sip in as much air as you can, hold for three, then sip and hold again before releasing. The first time I did this I literally felt the pressure in my lungs decreasing as the little sacs inflated again during each of the three holds. I asked the physio specifically how far I should push into pain, and she said as far as I could. This exercise won't do damage. Each day since, I've set a new best inhalation. As I write this on day 5 post-op, I'm at about 2.6 litres of my pre-op capacity of 4.5 litres. I can tell that my ribcage still is barely moving when I take a deep breath, so I think I'm getting into diminishing returns until my bone is healed and I can really start going for it up high. 

The big event of day 2 was the removal of my chest drain tubes, the pair of which sucked fluid from the surgery site out into a little suction machine that came everywhere I did. Aside from the main incision, one or both of the exit holes of these will be the only other long-term scarring from this procedure, just below the bottom of my sternum. 

Now, this whole recovery procedure is a long parade of tubes being removed from your body, and they all felt very different from one another. They all felt uniquely uncomfortable, and various degrees of unpleasant, but never painful. The drain tube was a weird one, but the strangeness of its extraction was immediately overshadowed by an incredible feeling of physical liberation. Almost in a blink, I felt human again. This, the extraction of the drain tubes, is the the goalpost for in-hospital recovery. After this, everything came easily and felt so darned great relative to what was before. Beyond this, it has been just fine. 

A blood draw was taken each night around midnight, and while I slept really well on the first night without the drain tubes, your sleep rhythms are so thrown off by the whole process and environment that this wakeup never felt onerous. My blood came back that night with an elevated white blood cell count, which might mean that your body is fighting an infection, or is sometimes just a thing that happens post-op, especially in younger patients. We had to wait and see.

 

Day 3 post-op

This is when it started getting boring. I was certainly up and walking, but I can't recall if that started a day prior to this. Anyway, I definitely felt foggy, especially when I was up and about. My vision seemed not quite right, which I hadn't noticed prior. I hadn't so much as thought of looking at my phone or reading a book before this day, so I was surprised at how my vision wasn't cooperating to do either of those things. I was assured that was a typical effect of the drugs still working their way out of my system, and indeed that has proven to be the case. 

I caught up on some podcasts and listened to some music, and slept a lot. It was great to feel like a person again, no matter how compromised.

This evening's blood draw ended up coming back with my white blood cell count still a little higher than normal, but less than the last night's. A good sign that there probably wasn't an infection.

 

Day 4 post-op

This had been the stated target day for me to be sent home, for the preceding couple of days. It was the first day that getting up to use the bathroom (since the catheter had been removed the same day as the drain) felt like a fun outing and not like a major hardship. It was also the day that I learned that there were POPSICLES in the fridge down the hall that NOBODY HAD TOLD ME ABOUT, so I went on lots and lots of walks, and reaped commensurate rewards. 

I was apparently low on potassium, so I had to take two of the biggest pills I've ever seen in my life. The least fun pills of the process.

The last real piece of equipment to be removed from my much-punctured body was a pair of wires that everyone gets during surgery to provide an easy and effective way to get electricity right to your heart at any time during your hospitalization, in case things are going south. The wires were removed, which felt novel as it had been more than a day since something was pulled out of my body. One has to lie still for a half-hour following this particular extraction for observation in case of any internal bleeding caused by the extraction or anything else funny. All good for me. I had to wait the mandatory four hours between wire extraction and discharge, and I managed to slowly and carefully dress myself, then I walked on out of there. What a crazy few days.

Surgery day

I'm Home! It's been a whirlwind punctuated by intense boredom since my surgery on Tuesday morning. The TL;DR is that I'm home and doing well on day 4 post-op and I think my stay was just the right length. Here are the details I can recall of surgery day, more to come about those that followed as I have chance to write. Please don't hesitate to ask for clarification or further details, I really want this stage of my story to be a resource for anyone else going through heart surgery.

Operation Day

Early morning, 6AM call. I was planning on taking the bus, but the bus didn't start running early enough so there went my dream of that particular righteous story. The whole process through my discharge took place up on the 9th floor on the main building of Foothills hospital, very close to home for me. I had very little notice (I found out on Thursday before a long weekend for a Tuesday operation), so I was unable to get my last-minute bloodwork done beforehand, so they did that first thing. I was greeted by the nurses and staff, and asked to give myself an almost-complete wipe down with some serious disinfectant wipes and get into a hospital gown. 

Then I was given my first of many little cups of pills. If you have any difficulty taking pills I would really recommend working to get over that before you have any major medical event. I never had to take any meds regularly until my heart problem was diagnosed, and I had never really gotten the knack of doing it smoothly. I've since had a couple of years of experience with little caplets of ramipril, a blood pressure medication, and I'm good now, but I had to take some big chalky ones by the end (for low potassium just before I left hospital). 

Then I was given an ativan, and boy howdy, that's the pre-op finish line right there. I remember lots after that, but if you're worried about holding your nerve you have nothing to worry about after the ativan. Shortly after, I said bye to my wife and was wheeled away to the surgery/ICU part of the floor. A small parade of doctors came by to brief me and introduce themselves, I recall talking with the anesthesiologist and the perfusionist, who operates the heart-lung machine, and I'm certain there were others. I experienced no anxiety at this point, whatever I had had going was all ativaned away. 

Soon I was wheeled into the OR, which I recall as being the most thoroughly-lit room I've ever seen in my life. LEDs everywhere. I was chatting happily with the nurses who were putting lines in me and I recall not having a care in the world. My surgeon, Dr. Kent, stuck his head in the door and greeted me, then gave a everyone short recap briefing of what we were there to do: a valve-sparing aortic-root replacement if possible (David procedure), or if not, aortic-root replacement and replacement of my aortic valve with a mechanical one (Bentall procedure). I'll detail the implications of each in a future post. 

And I don't remember anything pre-op after that.

When I woke up, I felt like a zombie. I should emphasize first that never did I experience significant pain, from beginning to end of my hospitalization, and while I never felt like I needed to ask for additional pain meds I was always made aware that they were there for me and I shouldn't hesitate to ask for them. So, when I say I felt like a zombie I mean that I instinctively knew that my body was just functioning on a bare subsistence level. There was no panic or anything, just an understanding that for example deep relaxed breathing just wasn't going to be possible, and my job was simply to continue getting by while my body and the doctors started to sort things out. I have fleeting memories of the ICU, but almost nothing to latch on to. I recall the extraction of the carotid artery probe down into your heart that they put in when you're under, and it not hurting at all. I asked for a look at it after it was out, and I recall it looking pretty neat. 

My wife tells me she spoke with me briefly that night, but the nurses let her know that I almost certainly wouldn't remember anything, and that if she was there for her well-being that was great, but it probably wouldn't impact mine. 

I also remember being told that Dr. Kent was able to save my valve with a great result, so the big question that couldn't be answered until the procedure itself went the way I wanted it to. I don't think that how great that is for me going forward has really sunk in yet, but there will be time for that.

Tomorrow is the day!

A bit of a whirlwind here. I was told at my pre-op appointment that I'd probably get 1-3 weeks notice, but I got a call Thursday morning before the long weekend telling me I'd be in first thing on Tuesday the 22nd. I finished up my last week of concerts (the first Harry Potter movie live to film, good fun!) and my ongoing project to have all my trumpets squeaky clean for their vacation, washed and unplayed, has been successful. We've been getting the house in order and the bedroom all set up for me. 

After the call informing me of my date, I had a CT scan the next morning. I was told not to have any caffeine or alcohol before, as well as to avoid exercise. It turns out the reason for this is that your heart rate needs to be nice and low for the images to come out crisp, and if it takes hours of sitting around and application of beta blockers to get it where it needs to be then you're in for a long day. My resting heart rate is usually 60-65, but sitting in the waiting chair it was sitting between 67-73, which was too fast. The nurse said they might give me some beta blockers but I asked her to give me five minutes, and with good relaxed slow breathing I got it down to 62, which was good enough for them. They moved me into the machine, lying down, and I got my HR down to 57, so they got good pictures easily.

They gave me a spray of nitroglycerine right in the mouth, which dilates your heart's blood vessels and allows them to get better pictures. I went straight from my scan to work, and I mentioned to a colleague that they gave me that nitro and its manner of application, and boy was that a first. He chuckled and said that the violas probably didn't think it was the first time.

So I'm to be at the hospital at 6AM tomorrow. I'm really looking forward to getting this over with. And I'm very very curious about how good I'll feel after I'm recovered. My heart has been so leaky for so long that I think I probably don't even realize how tired and generally sapped I have been over recent years. I'll report back about that in six months or so. Next post will probably be 4-7 days after surgery, when I'm home from the hospital and all settled.

A brief overview of the story so far

There are lots of blogs on the internet about undergoing and recovering from heart surgery, but strangely the huge audience of brass players wondering about what it might be like to get back to playing professionally after undergoing something like this is dreadfully underserviced. I hope this blog will not only be a good way for me to get my thoughts down, but will help other people, musicians or not, get ready for and get back in the game after heart surgery. Expect this to be frank and not overly copy-edited; perhaps I'll polish things up later. For now, I'm just going to try to get things down.

Where to start? I suppose I'll dive right in. 

A couple of years ago, in February of 2016, I found myself in an urgent care centre with a gallbladder attack brought on by an overly ambitious encounter with a large assortment of fine cheeses. A gallbladder attack is no fun, and it was pretty scary to have sudden upper-right quadrant pain. I thought it might have been some sort of heart event, but luckily that was not the case. 

While I was being looked after, a doctor listened to my heart and asked "you know you have a heart murmur, right?", which was the first indication I ever had of a problem I'd been living with for my whole life. The gallbladder event was an isolated event, and I've had no trouble since. But I was told to follow up about my heart murmur. 

My GP sent me in for a transthoracic echocardiogram (echo for short), a non-invasive ultrasound of the heart. This revealed that I have a bicuspid aortic valve (BAV), a not-uncommon defect that substitutes a bicuspid valve of some sort for the correct tricuspid aortic valve. A tricuspid valve has three leaflets, and looks kind of like a skewed Mercedes logo; while a bicuspid valve has two leaflets and can be in several different configurations. Mine is pretty much 50/50, two equal leaflets, while for some people it's effectively a tricuspid valve with two fused leaflets, making a very different configuration. One of the four valves in a normal heart is indeed a bicuspid valve, so it's not a totally unfeasible configuration.

The problem is that a bicuspid aortic valve can get leaky. One big reason for this is that when you have a bicuspid valve your aorta (the main blood vessel taking oxygenated blood to the rest of your body) often ends up dilating over time. This causes the valve to be pulled apart and become increasingly leaky, and it also causes progressive weakening of the walls of the aorta, which can lead to pretty dramatically bad things. 

The normal diameter of the aorta depends on your body type, but mine was pretty big. The normal recommendation for surgery is to go when it reaches 5cm. Mine has been steady in the 4.8 range since we spotted the problem. But due to my job, which certainly puts stress on my circulatory system, and the relatively low risk of surgery for me due to my age and general state of health, my cardiologist and cardiac surgeon have recommended that we go ahead and do it, and I'm following their advice. 

My pre-op appointment is booked, and I'm waiting to hear about a surgery date. I assume this will all happen by the end of May, but the scheduling process is arcane and opaque, and I've decided not to stress about possible permutations of the schedule. I'll just take it as it comes, and be glad that the problem was diagnosed before my aorta went pop.