Version in German

^{(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.)}

Immediate

It may perhaps have been daft to have driven to Koblenz even though I didn’t feel well. But I believe it saved my life. It was the thunderclap. Without it I would have gone on committing many foolish things. And there really were quite a few of them.

I would have gone on pushing my father’s sometimes-on-the-blink last own car (an Opel Agila, called the Papamobile by us; he hasn’t driven himself for quite some time now, and my siblings and I take him everywhere) up an incline on my own. Or replanted my parents’ rhododendrons on my own. And thereby probably killed myself at some point. Why killed?

A different life

With an aneurysm you live differently. You have to live differently. To protect yourself from the catastrophic consequences of the aneurysm such as dissection or rupture.

The problem, at least at the diameter I had at the time, was less the normal life. The aneurysmatic aorta also tolerates that quite well up to a certain diameter. It is the blood pressure peaks that constitute the problem. Processes in the body that sometimes let the blood pressure rise to great heights, only for a brief moment. A brief moment is enough to cause problems, if only the peak is high enough.

I wrote earlier about Laplace’s findings. That the pressure on the inner vessel wall increases. It is known that the tissue of the aorta withstands a certain pressure before it tears. In normal life with a normal aorta you are quite far away from this value. With an aneurysmatic aorta, actually, too. Unless it is really very large.

But then there are precisely these blood pressure peaks. Blood pressure peaks are normal when you have to do something with force. Static force. Even more so when you don’t breathe properly in the process. Use the Valsalva manoeuvre for it. You may know it: holding your breath when you have to lift something heavy. Lousy idea, really lousy idea. Produces severe blood pressure peaks. And with an aneurysm you have to avoid everything that produces blood pressure peaks.

That means, for example: no longer lifting heavy things. Which was problematic, since my core craft competence around the house essentially consisted of hauling heavy things from A to B. Holding things in place. Things that need a lot of force. Over. No more. From cement-sack-heaver, employable at most as a canapé fairy and coffee producer, if only my canapés were tasty or my coffee good. Since then I have considerably expanded my craft skills, in order to still be of some use somehow.

For house moves you become worthless in an instant. Carry a heavy box of porcelain? Nope. The record collection? Double-nope! I’ll happily carry the stack of sofa cushions and the cuddly toys, then. Also an important job. But not what you expect when you “invite” a guy of 1.92 m to a house move and think he could help with the heavy things. Feather cushion instead of the pocket-spring mattress.

The problem follows you even to the toilet. There is the saying “May you be struck down while on the loo” as a particularly bad curse directed at a person. You don’t say that. But there is something very real behind it: extensive straining on the toilet produces astonishing blood pressure peaks. That is why strokes, for example, also happen more often on the toilet. Because with very high blood pressure something somewhere gives way at some point. I really don’t want to scare you, but reality is simply like that. And there you are, lying in a compromising situation next to the toilet.

This quiet place is not entirely harmless anyway: Elvis did not, as suggested by “Man in Black”, only fly home, nor did he die of a drug overdose. He was found with his loo reading in the bathroom. There are places to which even the king goes on foot, and from one of these places even “the King” did not come back alive. No, Elvis did not die of an aneurysm. But there is the theory that his heart attack was triggered by problems caused by a Valsalva manoeuvre (in plain terms: breath-holding/straining) during a bowel movement (see https://de.wikipedia.org/wiki/Nachleben_Elvis_Presleys). So perhaps one should enter this place with a certain caution.

Another possibility, however, scared me the most: there is indeed a considerable number of aneurysms that burst in very emotional moments. Emotional stress also leads to blood pressure peaks, after all. There is a paper from 2007 in which 40% of all those surveyed who had had an aortic dissection reported that they had been exposed to considerable emotional stress immediately beforehand ¹. Elsewhere I read that this can be both positive and negative stress. Although I consider positive stress an odd term. Can there be positive stress if the effects of stress are negative? Even if we are happy about it.

Grief, loss, joy, ecstasy, anger, annoyance, despair. What is normally completely harmless can, with the right physical disposition, become a problem. And you can control it only a little. While you can stop pushing cars, or simply no longer carry anything north of 10 kg at house moves, emotions are part of life. And while you can avoid some emotions, many of them are unavoidable, unless you want to become a hermit. Unless you want to renounce life completely. And therefore here I had the greatest worry that at some point something might come out of that corner.

All of this was the kind of advice I got from my cardiologist, or by reading on the Internet. Through the latter I also came to the information about Elvis. Actually he interests me little, because I don’t really like his music.

You really do ask yourself whether this is now a new reality in which you absolutely want to live, or whether you promptly see to it that the problem is eliminated. I was strongly torn in that respect. It was the decision between two risks: take it easy or operation. I later used a third way. One not signed off by any doctor like that. But which worked quite well for a while.

A big tip to everyone here: get used to a sensible breathing technique when lifting heavy loads. Saves you a lot of trouble. And avoid constipation!

Post-Koblenz

What happened after Koblenz? The next three months were to become exciting and exhausting. But they ended quite differently from how I had thought in that November. Even in February 2019 I had not yet thought that they would end like that.

I believe, a day after the hospital stay, I sat in front of my GP’s desk and knew afterwards that I would need a new GP. Said from today’s perspective: not that he had made a mistake. I also consider him a competent doctor.

After this conversation I was just very sure that I did not want to go the further way with this GP. This was more than a cold, more than the flu, more than the usual illnesses. The conversation did not go well. I really thought that the person across from me must have screwed up. It only became clear to me later that that was nonsense. He did, however, give me a tip for a good cardiologist in Lüneburg to take with me. For this tip I am grateful to him. With this cardiologist I have stayed to this day. Not much later I had my records handed over and changed GP.

It helps in such a situation to have a doctor who radiates a certain calm. And the cardiologist was such a doctor. I believe it is quite decisive, in such a situation, to have a doctor who describes the situation as it is, but precisely with a certain calm; who does not gloss over the situation, but also does not give you the feeling of being pushed in a particular direction: “But you must operate on this right now! 112!”

I got an appointment with this cardiologist quite quickly with the diagnosis. The word “aneurysm” apparently speeds things up enormously. That my condition was not unproblematic I noticed at the latest from the fact that the patient manager, after she had given me a very prompt appointment, said that I should in any case go to hospital immediately if anything felt strange. Gulp. Okay. So this is serious.

But until my appointment I had no problems. So I went to the cardiology practice. First an ultrasound. It confirmed what the cardiologist from Koblenz had seen. I did not have the hope that the cardiologist in Koblenz had made a mistake. I had seen the reading, and the line on the image somehow made sense. But being told it by a second doctor makes the situation clearer to you once again.

On the basis of the readings we agreed on the already mentioned conservative treatment: precise blood pressure control and healthy living. And with that it could, for the time being, have rested for a good while.

That was not, however, the end of it. At the beginning of December the situation was to change. To be completely sure, my cardiologist sent me for a CT. With the ultrasound you don’t see the whole aorta. There are, after all, ribs in front of it. My doctor wanted data for the entire aorta, and for that the contrast-agent CT is the means of choice. And precisely here the story took its first “strange” turn.

It was relatively easy to get an appointment for a CT. Here in the area (and I include Hamburg in that) there is, it feels like, an MRI at every second lamppost and a CT at every lamppost. Well, almost. But at least this is a very populous metropolitan region. In December 2018 I went to one of these options and had myself examined – and stood in front of an even bigger problem, in the truest sense of the word. From 48 mm it became more in the CT. Considerably more. 57 mm. That was more than the 55 mm of the threshold definition. With that an operation was indicated.

First attempt

With that the pre-operative diagnostics started. A so-called swallow echo was the first step. A probe is pushed a little way down the oesophagus, in order to measure at the optimal position. Optimal, since here you are almost directly at the structures you want to observe. No ribs to conceal the view.

Doesn’t sound especially pleasant. Surely it isn’t, either. In 2018 I had myself knocked out for it. There are supposed to be people who do this with only a little anaesthesia in the throat. But I didn’t feel that hard-bitten after all.

Sometimes I am a wuss. I had myself sedated, so that I can’t even say whether it was particularly unpleasant. I only remember a doctor saying: “Don’t worry, we’ll take care of you.” And a little later I woke up under a blanket. I suspect they knocked me out with propofol, and that stuff is a brilliant thing in the hands of doctors.

The strange thing: there they could only measure 48 mm. The same as was also measured in Koblenz. The same as was also measured by my cardiologist in the normal ultrasound. No trace of the 57 mm that had been measured in the CT.

Despite that, after the results I decided together with my cardiologist to plan the operation further for now, even though he could not reproduce the measurement from the CT. But the CT has the reputation of being more precise and, through the 3D representation, of showing things that the ultrasound cannot see. So I then came to my first operation date.

What was decisive in tackling the operation was, moreover, a completely different thought too: decisive was the cardiologist’s question of whether I really wanted to live the next ten or twenty years with the handbrake fully on. Because living with an aneurysm means that you have to do exactly that, as I already wrote. The value from the CT and this consideration then led to my asking my cardiologist to sign me up for the operation.

That operation was scheduled for February 2019. I still had a few weeks until the operation. And until then there were still a few weeks to spend with work. I actually drove about 400 km to a customer two or three working days before the planned operation date. The appointment itself went well, but my colleague immediately noticed that, in my thoughts, I was only half present on site. So shortly before the operation your thoughts are everywhere and nowhere, and it costs effort to push all that away during the customer appointment. It was nevertheless important to me. I couldn’t have just sat at home doing nothing. And I could scrape together the necessary concentration. Maybe not a highlight meeting, but a good one.

It was not, however, my first appointment in the time between the hospital stay in Koblenz and the possible operation. Professionally things had to go on, after all. The first appointment after that night at the end of November was actually around Koblenz again. After all, there was still a world to save.

My youngest brother was at the time staying with my parents for a longer visit and agreed to drive the route with me, to spend the day in Koblenz and to drive back with me. So as not to undertake the journey in the car completely alone and, if appropriate, to have someone with me should anything go wrong. Because who knew what would happen? Not me.

On that day I managed essential steps to solve the problem at the customer’s, since I was able to narrow it down. And since I wasn’t driving myself, I didn’t have to worry about any working-hours rules. For the next appointment I was already on my own again and then really did save the world, at least this little world.

In between there was repeatedly diagnostics in preparation for the operation. It is “best practice” to do a cardiac catheterisation before such operations. Surgeons apparently don’t like to be surprised. If you’re going to open the bonnet anyway, you want to know what else you might be able to take care of at the same time. They want to know what awaits them. Opening the chest is no trifle. You don’t want to do that too often.

I had to go to hospital for it. The cardiac catheterisation, however, brought to light nothing that was worrying. The heart was tip-top. No stenoses. Just that I had the aneurysm. But I already knew that.

Since then I joke that my parents back then ordered a heart for me hand-forged by Michelangelo (the Buonarroti, not the turtle), but unfortunately the workshop fitted this super-heart with an aorta from the bargain bin of the local clearance-stock shop. That feels like a soup-zoom bottle-bottom lens on a Nikon D6.

A cardiac catheterisation is a strange thing. It takes place only with local anaesthesia. I could look at the screen and saw that the doctor had pushed a catheter from the groin through the aorta to just in front of the heart, then threaded into the coronary vessels and there depicted the coronary vessels with contrast agents. Of that you feel exactly nothing, apart from the pressing at the sheath in the groin. And that has something very surreal about it. Seriously. The doc is just fiddling around inside you with a “wire”. And you watch.

Although: Werner Forßmann, who in a self-experiment carried out the first cardiac catheterisation on a human, apparently walked with the catheter all the way to the X-ray basement of the clinic. I was not allowed to get up for five hours, since there was a pressure bandage on the groin. It must at some point have turned out that walking around is a daft idea in this situation. His boss – Forßmann’s, that is – then also declared the whole thing a circus act. A circus act for which he was to receive the Nobel Prize. But by then, to my knowledge, he was already working as a urologist.

The problem, however, was: here too the 57 mm could not be seen. But since it was only a few days until the planned operation date, we (my cardiologist and I) decided that I would drive to the hospital, but that the hospital should form its own picture once more before the scalpel comes into use. The cardiologist spoke with the hospital, in order to point out to the doctors this strange circumstance, that there was this CT image and deviating measurements in the ultrasound images, but also informed them of the second reason.

I got a call from the head physician of the heart sugery, who also found all of this a little strange, but said for now: “Just come by, but we’ll do an MRI beforehand. We’ll have another look ourselves. And then we’ll decide.”

And so during that time I waited for the day on which I was to drive to the hospital. Unsure whether I would be operated on at all. That is a very peculiar situation.

Preparations – first attempt

But I first had to assume that this would be the day. I could hardly have said: “Okay, I then still have to pack and go shopping.” Besides, the errands distracted me. Shortly before the appointment I came to the conviction that I would need two pyjamas. Until then I didn’t know how hard it is to find, in Lüneburg, a pyjama with a button placket that didn’t look as if its last design review had taken place somewhere around the middle of the last century.

I have to correct myself: it wasn’t hard, it was impossible. I found some. That wasn’t the problem, once I had found the right shop. I bought them too. They just looked as if they could appear in the encyclopaedia as the picture next to the word “fusty”. I had two pyjamas that actually looked the way I did not want them to – and the way I would certainly never wear them again after the hospital stay.

I would probably have looked like my grandpa in the pyjamas. There would have been more modern pyjamas. Just without a button placket. Why a button placket at all costs? So that you don’t have to pull anything over your head to allow an examination. Since the ribs have to get out of the way, they are separated. Then doing it with arms above the head doesn’t work at all at first. And that makes many things very difficult. So a button placket, so that you can simply unbutton it for an examination.

12 February 2019

On 12 February 2019 I drove to the hospital. I reported to admissions, filled out plenty of paperwork. Everything ran for now on the assumption that I would be operated on. Then the imaging took place: the first MRI of my chest area was done there. This was still with contrast agents. It was also the only MRI with this chemical. And what can I say? This method could confirm the readings from the CT.

Result: I was not operated on. They would have done it if I had insisted on it. But somehow I did not insist on it. I was told that the aneurysm was shaped in such a way that one could wait quite well after all. I understood it as: “It is there, but the probability that it will burst is, at the measured width, currently acceptable.”

To be told by one of the German luminaries in this field that one can wait softened the firm resolve to have it carried out, regardless of the measurement result, for the sake of releasing the handbrake.

“Currently not worthy of an operation” is in the report from back then. “Come back in half a year for an MRI. From now on we’ll do a close follow-up check.” I stood in front of the hospital in Hamburg, waited for my brother – that brother who was to take me to the hospital again in 2025 – and basically thought the same as in Koblenz in front of the hospital: “Shit.”

You may wonder at the reaction. Actually one has to be happy when it doesn’t go on the table. It’s great, after all, if you get around a major operation. But I had prepared myself for this operation over weeks. Mentally. Had made my peace with the fact that they open my chest. And then: “Nope!” That is extremely anticlimactic. The thing I had stared at over the last weeks like a rabbit at the snake did not take place. That is something one first has to digest too.

Moreover: I had not got around the operation. That was more or less unshakeably fixed. The problem was still there. The elimination was only pushed into the future. That made it clear to me that at some point I would have to go through the whole preparation again. That the thoughts would all come back when it really came down to it at some point. And in 2025 it did take place.

From today’s point of view I’m not sure whether that was a good idea. Maybe I should have insisted on the operation. Because the time that followed changed me a lot.

Pyjamas

The situation did have one advantage, though. I had not yet unpacked the pyjamas. I had asked my parents to wash them and bring them over when I needed them. On the first day I would have gone to bed as always. I am not a pyjama-wearer normally.

Then you don’t need a pyjama for a few days, because you wear those extremely flattering operating-theatre gowns. There are simply a lot of tubes and cables hanging out of you, and these are a little incompatible with normal sleepwear. The privilege of wearing trousers only comes back a little later. And only once you have regained this achievement of civilisation you need the pyjama – when one or other tube is precisely no longer necessary.

I had actually only bought these pyjamas very few days before the operation, because I had only then, in a somewhat sleepless night, read how useful they would be later. The pyjamas were not yet unpacked and washed when I came home again. I was not operated on in 2019. So I did not end up with what are probably the ugliest pyjamas in Lüneburg in my wardrobe. Because I took them back again.

Misunderstanding

What had actually happened? Why this error? Although today I rather have the suspicion that there was somewhere a communication problem. Where did the 57 mm come from? Did I communicate something faultily?

Over time several suspicions about it have crystallised: “Too much information” in the findings, i.e. that a piece of information that was actually not that sensible was passed along, which was meant to say something else but came across wrongly. “Not perpendicular” measuring would also be a possibility. For the latter, imagine a garden hose. Cut it off perpendicular to the direction of flow and then again at an angle (so not perpendicular). Measure how big the radius is. The one is a circle, the other an ellipse. That could be an explanation. In one axis the measurement was correct. Just not in the other.

On the other hand, back then the 57 mm were measured at a quite specific spot which, at the last ultrasound before the operation in 2025, was observed to be much smaller. None of it fits together either.

Did I perhaps move during the scan? I know that I moved. But not, actually, during the scan. I would, however, find it very strange if that had produced a wrong measurement and not an invalid image.

But exactly why the 57 mm were on the table I can no longer reconstruct today. It is, after all, seven years ago now. I have by now been operated on. At 54 mm at another spot of the aorta. When I look at the readings like that, though, there was no other spot at 57 mm.

I don’t know. But it doesn’t really matter either. One of the main thoughts was, after all, that after the operation I could release the handbrake again. It must then no longer have been so important to me, on site, when I could have pushed through the operation with my wish, to release the handbrake. Mother Courage stood stupidly in my way or had quickly gone off to get a coffee. Because I did not express the wish. And drove home.

Waiting

I learned to live with the aneurysm. Perhaps also a little too well. After all, it stayed, roughly within the measurement tolerances, of the same calibre in my chest for a long time. And I simply had a little of the hope that my aneurysm was a normal variant, that it would stay at the measured value. That it was not a pathological process, but simply: “Just the way things are with Jörg.”

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