(Ein wichtiger Hinweis: Ich bin medizinischer Laie. Ich habe nur lange mit meiner Krankheit gelebt. Ich kann alles medizinische hier falsch verstanden oder falsch wiedergegeben haben. Jede in diesem Text wiedergegebene Information ist potentiell aus dem Zusammenhang gerissen, falsch, unvollständig. Hört auf Euren Arzt! Fehler sind meine Fehler, nicht die meiner Ärzte.Meine Erfahrungen sind anekdotisch. Eure Erfahrungen können anders sein.)
The time of preparation is almost over. Off to the hospital.
Retail therapy
In the days before the operation I was, in some respects, pretty scatterbrained. In many places. But all the errands distracted me. I’d like to tell one story here. It was the time when Apple released new watches. I was no longer quite satisfied with my Garmin and had long been considering whether I’d return to the camp of the Apple watches. I also remembered a Fediverse user who used the watch to authorise several Macs.
Okay, that’s nothing special now. Why am I telling this here? Misgivings came from a completely unexpected direction. Because a voice in my head said to me: “Don’t you think you should wait with that until after the operation? It’s so much money, after all. And what if you can’t use it at all? So much can happen, after all.”
And then you stand in the living room, shake your head and think: “Jörg, you didn’t really just think that.” With this thought I felt like those old ladies in a joke I heard many years ago. Two elderly ladies meet at the cemetery, busy with tending the graves. One very old lady says to the other: “I’ve now bought myself a new little rake for tending the grave.” Says the other very old lady: “Is that still worth it, then?” I’m fairly sure right now that I’ve left out a part of the joke, because it isn’t, when I think about it properly, funny enough that I’d remember it for so long. In any case, that was the punchline. I apparently really did ask myself whether I should buy the Apple rake, on the basis of imagining a possible unpleasant state after the operation, in the assumption that I wouldn’t then need this rake any more.
For me that was a sign that I’d put myself, mentally, too far into the “everything could go wrong” corner. A corner I urgently had to get out of.
I ordered the watch. That was classic retail therapy. Buying something so that you can put something straight in your head. And retail therapy is just about the last thing you should do, because it never helps in the long run. The push in the brain, the joy over a new gadget, lasts maybe three days, and then you ask yourself: “Did I actually really need that?” and get annoyed about the money spent.
But that wasn’t what it was about for me at all. I didn’t buy the watch because of the “new gadget” rush, it was actually a statement to myself: “Jörg, stop thinking so negatively.” However, that is and remains retail therapy. Perhaps not of the entirely negative kind. But still.
The day came
At some point the day was then there. Finally. Unfortunately. Both fit. I went into the hospital on 29 September. I’d actually wanted to stop properly working a week beforehand. It turned out differently, though. I distracted myself with my projects almost until the last day. There was always something to do. Writing handovers. Final work on projects.
On the Friday before the operation, besides small remaining tasks, I only took care of one more important point. I told all my colleagues what lay ahead of me. A few colleagues to whom I’d handed over my work already knew it beforehand, but, as promised, had said nothing.
My brother drove me to the hospital. He picked me up early that day. I had to present myself at the hospital as early as 9 a.m., and under no circumstances did I want to be late. We drove towards Hamburg, and my brother distracted me from my thoughts that the day had now really come. We talked about all sorts of things and nothing. About plans for the time after the operation.
We reached Hamburg. Köhlbrandbrücke. Harbour. Elbe tunnel. The A7 roadworks. My thought-world was very strange on this journey. It sounds silly, but the thought “Am I seeing this for the last time now?” flickered up somewhere there in the background. And there were these negative thoughts again. I was annoyed about it. I hate it when I think like that.
He dropped me off in front of the hospital. I know that he had a bad conscience and still has, because he only stopped in front of the hospital and I trudged into the hospital alone with my belongings. This bad conscience remained, no matter how hard I tried to convince him of the opposite. To this day. But what could he have done?
The 29th of September was a preparation day, an examination day. It wasn’t the operation day. Should he have simply sat around everywhere until I came out of the respective rooms? Waited until I’d been shaved pre-operatively?
I was more than grateful that he drove me. He wouldn’t have had to sit around in the corridors. It wasn’t the day on which I was operated on. The day on which he could, if necessary, have waited in front of the OR until the doctor came out (the German “you can wait until the doctor comes” must have its origin here) and said that everything was in order. Or not.
The bad conscience marks him out as the wonderful person my brother is. It was nevertheless unnecessary.
Taking blood. Swabs as to whether you’d brought any wild germs with you. And yes, you really are shaved on your body. That’s operation preparation. I had, admittedly, already done preparatory work, but that probably only made the work harder. Conversations that were both consent-giving and getting to know the doctors. These conversations gave me both certainty and uncertainty.
Certainty, because I gained trust in the doctors. Uncertainty because of a question that was put to me in this context, which I’ll come to later in the course of things.
And in between, again and again, waiting. I actually looked out of the window all day before the operation, when I wasn’t just out and about somewhere. I’d spread myself out at the table by the window, and between the appointments of that day I gazed out at the houses that were visible from there. I ate something. At some point they brought us lunch. I can’t remember any dinner. But that doesn’t mean anything. It’s quite possible that I took something but didn’t really register it at all.
I remember movement against what was, in my memory, blue sky. Now and then a plane was to be seen on that side. Since I saw the Airbus Belugas, this must have been the air traffic from Finkenwerder, because they don’t take off from Fuhlsbüttel. On that side there was some movement in the world. Something that my hospital room after the operation was to lack. And which was to weigh on me heavily.
The day flew by. Doctors’ conversations. My surgeon came to me to introduce himself. The anaesthetist came with the consent form for the anaesthetic and introduced himself as the person who would put me under anaesthetic the following day. In the end I didn’t really know what questions I should ask.
It’s such a strange situation. You prepare yourself mentally for the operation. Read an awful lot. Have questions, too. And then the doctor is sitting in front of you, you can ask questions, and nothing comes to mind. I talked about other things with the doctor. That he’d been explicitly recommended to me as a doctor. That I’m a little afraid of the day. But no questions about the operation. Or about the aftermath.
I can only give the tip: write your questions down! In the situation you won’t really be able to remember any of the questions and will ask some kind of placeholder questions. The only annoying thing is: ten minutes after the doctor is back out of the room, the important questions come back to you. All of them.
The night before
At some point night descended over the hospital. It became quieter. Even in the evening, when basically only the lights of the neighbouring houses were still to be seen, I looked out of the window for a long time. I couldn’t sleep.
In my room there was also someone else who was likewise to be operated on the same day as me. He also went through all the steps of preparation. If I remember rightly, he was in hospital for a heart valve operation. I talked with him again and again throughout the day. He was amazed at my knowledge on this subject, I at the calmness of mind he displayed. I still ask myself to this day whether there’s an inversely proportional connection there. Less knowledge, more calmness. By now I’d come to the conviction that, in the almost seven years, I’d simply accumulated too much information.
I still remember that in the evening I was supposed to wash myself with an antiseptic. It was the last shower for a longer time in which I wasn’t handicapped by cables. Had I known how long I wouldn’t be able to shower properly, I’d probably have celebrated this moment of the warm water flowing over me (yes … warm-shower-taker) for considerably longer. Drawn it out.
It was quite interesting how careful people were here on the whole. You weren’t allowed to lie in bed with your own clothes. Only onto the bed, which was protected by an additional blanket. Only after you’d showered and were in the OR gown (and an undergarment that hardly deserved the name) were you allowed to get under the blanket.
I remember that the light from the path lighting outside shone into the hospital room. It was basically like in Koblenz almost seven years before. It wasn’t completely dark, and I couldn’t sleep for a long time. The light shining into the room kept me from it.
I heard nothing more from my room neighbour that evening. Presumably the medication worked better for him than for me. I don’t even know what became of him. How he was after the operation. Whether he survived the operation. Unfortunately I don’t have the faintest breath of an idea.
At some point, thanks to the pharmaceutical industry, I did nod off after all. I no longer know when, though. I don’t know for how long. It’s one of the memories I’m missing.
The day is here
05:30. Get up. The day was here.
There isn’t much I remember. To this day I’m trying somehow to puzzle the 30th of September and the 1st of October together. And wide stretches of time are missing. It simply doesn’t work. There could have been a 31st of September suddenly arising out of empty space. I wouldn’t remember it.
It’s fragments that come to me. Fragments that seem fairly arbitrarily selected, because some of them are so mundane. So superfluous. I try to remember the face of my anaesthetist, but I can’t. I do, however, remember the face of the person who wheeled me back to the normal ward after the operation.
I remember that I was wheeled into the OR area. At the front of my bed there was a sign “Caution heart operation.” That I remember. Presumably because I took a photo of it. Something inside me said: “But I’m not having a heart operation. Only close to it.” Because I somehow didn’t want it to be a heart operation. Heart operation sounds even more enormous.
I remember that shortly before the operation I was in a darkened room. I lay in my bed. The situation seemed calm. Very calm. I felt calmer than I’d expected. It felt like the calm before the storm. You expect something, but suddenly everything seems peaceful and calm. As if the world didn’t know what was about to happen. I suspect this room was the recovery room. But I no longer know. From there it would soon go properly into the OR theatre.
I remember that I was waiting for the anaesthetist to fetch me into the preparation room. And then there are only minimal, disjointed fragments. That the room was so much brighter than the room in which I’d waited for the anaesthetist. I no longer know what else I said. I can only remember that I said something. But even if my life depended on it, I couldn’t remember it. If in that moment I had the most brilliant idea of my whole life – it’s gone. Nothing of it left.
And. Then. There. Is. Nothing. Nothing. At. All.
I really can’t remember any more how I then got from the OR to the intensive care unit. How I got from the recovery room to the intensive care unit. Although, according to the report, I’m supposed to have been awake at some point. I can’t remember the ventilation tubes being pulled out. I’d read that that’s unpleasant. I would surely remember if I’d already been conscious there.
The operating doctor called my father to report the successful outcome of the operation. The operation report states that my family called the hospital and I couldn’t speak, since my vocal cords still showed themselves to be uncooperative after the ventilation. I’m supposed to have been awake. Here too: I’m unable to remember.
If I may give a tip here: tell your loved ones not to come on the operation day. If I take my own experience as a basis, you won’t remember anything, even if you do wake up. The relatives are informed by phone. I don’t think it’s really worth, with such an operation, wearing a track into the linoleum of the hospital ward, the way you know it from films. Besides: such operations are long. Your relatives would do a lot of waiting.
The next day everything is still difficult, too. But there a visit probably makes considerably more sense. I think I only really registered the world around me a further day later. From that moment my memory set in again, more or less. At least I think so. I have so few memories of the time after the operation that I can’t even remember any more when exactly the memories set in again.
To this day I’m not sure how many days I was in the state in which I was awake but basically registered nothing, or rather didn’t build what I did register into my memory. It could just as easily have been three days. That I was on the intensive care unit longer than I myself remember. The sense of time is simply missing for me. I could reconstruct it on the basis of the operation and discharge reports. I’ll probably do that too, with a bit more mental distance.
Shortly after the operation
I have a fragmentary memory that the nurses washed my hands. I actually didn’t find my hands all that dirty. I don’t actually know why they did it. That I received positive-pressure ventilation, to bring my lungs back to the right place and expansion after the operation, if I understood that correctly. I remember the sun shining in my face. A sun that was low. It must therefore have been at some point on the morning of the next day. I think. But everything else is somehow missing. I have no memories up to that point. For example, I was X-rayed post-operatively on 30 September, on 1 October and on 2 October as well. I can’t remember.
Something I could remember was the round that took place in the intensive care unit. A whole lot of doctors were suddenly standing in the room. The surgeon reported. One doctor expressed himself very pleased about how quickly I’d recovered from the operation. I thought: but you only wanted to replace the straight piece of the aorta. The doctor said: “We had to partly replace the arch.” I asked: “Hemiarch?” The chief physician retorted something to the effect that an informed patient is a good patient. Or something of the sort.
It seems to be like all repairs in life: once you’re at it, it gets bigger. In my family there’s the saying “3 days, 500 euros…” to say that it takes nine days and costs 1,500 euros. This was based on a spectacular misjudgement during the renovation of my cellar. I learned back then: it’s always double or triple what you initially think.
What had happened? The operation was considerably bigger than I thought. A replacement of the ascending aorta became, as I said, an operation reaching far into the aortic arch. That isn’t yet the maximum of what’s possible in cardiac surgery, but you do already reach deep into the repertoire of medicine so that you survive it. Because you have to get at areas there that supply the brain, and there must be no blood there.
If I understood it correctly, in an ascending replacement you basically clamp the piece off. Since the heart then can’t pump anything into the rest of the body, you bring it to a standstill and connect the heart-lung machine at another place.
If you want to get at the arch, that’s a bit more involved. The technique used is called hemiarch. Half-arch. To give my layman’s knowledge: I did mention that at the aortic arch the vessels for head and arms branch off. If you have an aneurysm at this spot, then the arch is exchanged and in doing so the vessels for head and arms are reconnected. That’s a very involved operation, as far as I understood it.
But what is the case if the branching vessels are still in quite good shape, but there’s a question mark over the other tissue of the arch? Or if the aneurysm goes very close to these vessels? For this, an operation technique was developed that’s not quite so involved. You don’t exchange the entire arch, but only half. The horizontally lower half, not vertically, if you look at it from the front. I don’t quite know how to explain this properly right now; just imagine that the aorta and the prosthesis are cut off at an angle and thus a piece of the aortic arch is replaced along with it. There are even videos about it on YouTube. Maybe don’t necessarily watch them!
Now you’ll probably ask yourselves how the blood gets into the brain. From the body, not at all. The heart isn’t beating. It’s brought to a standstill. The report will later state: “After 1 minute of cardiac arrest.” The heart-lung machine now takes over the job.
I was cooled down with the heart-lung machine, so that my cells need less oxygen. My circulation was brought to a standstill so that the spot could be operated on in bloodlessness. My brain was supplied directly by the heart-lung machine, which – if I understand correctly – was connected directly at the neck. Consistent with this is that I had no connection points at the groin. There are, on the other hand, still two red dots visible at the neck. Even after two and a half months.
It was the day on which my heart stood still. A thought that seems unreal to me to this day.
Before all this came the “minimal” sternotomy. The ascending aorta is in the chest. The ribs forming the chest are in the way for the operation. And have to be out of the way. The sternotomy is nothing else. The opening of the chest.
The chest has to be closed again after the operation, of course. You can’t just leave it like that. So that the piece taken out stays in place to heal, it’s fixed with a wire cerclage. My layman’s notion: fastened with a bit of medical fiddly-wire. I don’t yet know how that will affect future MRI visits. I think that, until after the first MRI, I’ll have a few very interesting horror scenarios in my head.
Minimal is, anyway, an extremely relative term here. For cardiac surgery this probably counts as minimally invasive. In the past, for such operations the whole chest was opened by sawing through the breastbone. Minimal means only severing the minimally necessary piece of the breastbone. Just enough that you can carry out the operation. So not all the ribs. This has the advantage that the healing is easier, even if the operation is probably considerably more demanding in terms of craft. This operation method has the great advantage that the chest thereby has more residual stability than if the whole breastbone is severed.
I’m glad that I went into the anaesthetic with the thought that this would only be a simple aortic replacement. Had I known what would happen, I’d probably have driven myself crazy with worry. Because I knew that repairs to the aortic arch are no small matter.
At least I was glad that I didn’t wake up clicking. That was the uncertainty that arose on the day of the preliminary examinations. I still remember the moment when the doctor came in to me before the operation and asked (this isn’t a literal quote now, but the content as far as I remember): “We may have to go closer to the heart. We’ll only see that once we’re at it. We may then not be able to reconstruct the valve. We can’t wake you up and ask what you want. Hence the question now: do you want a biological or an artificial heart valve, should it become necessary?”
I answered, perplexed and on reflex: “Uh … artificial.” I’d informed myself about this subject too beforehand and had a clear preference. The younger you are, the faster biological valves degrade. I wouldn’t have fancied a reoperation in ten years. I’d then have been 62. It would have been questionable whether I’d then have survived an operation reasonably well.
Above all, though, I was a little shocked. I still remember it: “Oh shit. This thing keeps getting bigger.” What all had I set in motion with the wish for the operation? And I still remember that on the way to the operation I thought: “I don’t want to click.” A characteristic of the artificial valve, you see, is that it clicks and that you can sometimes even hear that from the outside. At some point after the operation, as one of the really first conscious thoughts, there was the realisation that I wasn’t clicking. No clicking. Got lucky. I still have the factory part as a valve.
That was so important to me that it was presumably my last thought before the anaesthetic and my first thought after the anaesthetic. Would fit. I’d seen somewhere online that it does happen that people begin a sentence before the operation and finish it after the operation.
In the end it was 154 minutes that I hung on the heart-lung machine.
The day departed
What I didn’t notice so directly after the operation, but a few days later, was the fact that I was yellow-brown. Not on my whole body, but only on large parts. Somebody must have generously painted me with the stuff for disinfection. That probably takes place after the induction of the anaesthetic, because I have – you’ll guess it – no memory of that either.
When I was first allowed to wash, I thought at first that this colour would neeever come off. At most along with the skin in its entirety. Here, though, I can reassure: it only takes a bit longer and is more strenuous to wash off. At a point at which you actually want no exertion. In the first days I then also reckoned that I could live with the yellow-brown colour, rather than investing a lot of effort in scrubbing off this colour. I can also say: after a good two months the colour is gone. I even think it was already more or less gone shortly after the first proper shower. In contrast to a tiny scrap of ECG-electrode glue that I only saw two months later. I hadn’t noticed it before at all.
Perhaps because the great incision on my chest so captivated me. Once you’re no longer really thinking about the physical consequences of the operation, it’s enough to shower to have the operation suddenly back in your head. Even when you try to push the constant thoughts of it away, in order to recover from the operation mentally too. The scar takes care of the remembering. “Oh yeah, there was something there.” And not showering is no alternative either.
Breathing was rather hard for me in the first days. I had quite a bit of gasping breathing. The doctors and the nursing staff explained that with the fact that I had a drainage tube in my chest, and that this could certainly cause such complaints.
Unwanted detour
For the first day and a half I was in a two-bed room. I talked with the person who likewise shared the fate of a recent operation. I no longer wore a mask now. Only later did I move into a single room. I’d probably have moved into that anyway. Because now something happened that I didn’t have on my plan at all. I’d reckoned with everything, but not with that.
What happened? A lot! Shortly before or after the operation I infected myself with SARS-CoV-2. The first time. Since my hospital stay I’m no longer a NOVID. I wasn’t, due to some strange whim of nature, largely immune to SARS-CoV-2, as I’d suspected after five years without Covid, rather I’d simply just been lucky before.
I have my suspicions about who might have infected me. My family, who visited me, can’t really have been it. I’d forced them into masks. There’s a very sad backstory to this subject that doesn’t belong here. I therefore set two conditions when someone visited me: wear a mask and no children visiting. For very good reason. There was also no corona case in my family shortly before or after. Hence my suspicion that it must have happened somewhere in the hospital. Whether I got it in the hospital or whether I brought it with me – ultimately I don’t know. Is it relevant? Rather not. Wherever there are people, such a thing can happen.
To this day I’m unable to separate exactly what was the operation and what was corona. The first three days I had, as I said, quite a bit of gasping breathing. That may have been the operation, it could also have been corona. I know it just as little as the origin of the infection. I’ll never know. What I do know, however: I can’t recommend going through both at the same time. Corona and operation.
Although the worst thing for me wasn’t even corona itself, but the isolation that followed. And that’s what the next chapter is to be about.
