(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.)
Lucky mishap
It was of course gross nonsense that I drove to Koblenz by car despite everything. And every sensible person would probably have told me: “Go to the doc in Lüneburg tomorrow.” But what could he have done? He probably wouldn’t have done an ultrasound, the high blood pressure might have been over, and I would have been no wiser than before.
Hindsight is 20/20. From today’s perspective I can say: “If only the GP had done an ultrasound at a spot where cardiologists do their work. Or sent me for a CT.” Although I don’t even know whether that works so easily with every ultrasound machine that a GP has. But from today’s perspective all of that is easy to say. From the perspective of back then: why should he have done that? There was probably never a diagnostic indication that this was slumbering inside me.
On auscultation (listening with a stethoscope) it probably couldn’t be heard either, so that my doctor probably wouldn’t have seen any reason for a further examination. I later learned that you can apparently hear the turbulent flow of an aneurysm. I have to believe Google there. After all, I am not a doctor. At least I had been listened to with the stethoscope several times beforehand because of a cold. Or because of check-ups. And he didn’t hear anything unusual. I suspect because my aneurysm had grown in such a way that there simply was no turbulent flow there. I can’t explain it to myself any other way. I also wasn’t of the usual age for aneurysms.
I make no reproach whatsoever to my GP about this. When you hear hoofbeats, you should think of horses and not of zebras. And that is, from my point of view, simply not an aortic aneurysm. And I suspect a full-grown aortic aneurysm at 45 is a real zebra that you don’t think of at first.
What I had is quite rare. The thoracic aortic aneurysm (so the one I had, in the chest) seems, according to Google, to have a frequency of 0.1% to 0.3% across the overall population. With age the frequency rises significantly. But by that they mean around 70–80 years. Not 45, which I was back then. In part it is spoken of very conservatively as 1:5000. An aneurysm in the abdomen is more common than that.
The horse, at this point, was that my doctor had in front of him a slightly unsettled, more than overweight patient who had probably worked himself up into something and urgently needed to lose weight and exercise. And he was right. The horse was not a disease for which the usual indications were lacking. The aortic valve appears to be a clear indication that there is a problem with the aorta. In my case it functioned wonderfully even at the greatest expansion of the aneurysm, and they are still original parts – I’ll come back to that later. They are functioning wonderfully right now too. They only got their last check this week. And I hope that it stays that way for a while. On top of that: the disease was, in my age cohort at the time, very unlikely at first.
I really owe it to the decision that I drove to Koblenz despite everything that I learned of it at that point in time. In that respect it was not a lucky twist of fate, but lucky nonsense that I drove.
That is perhaps the nature of an incidental diagnosis. A few coincidences have to come together for the relevant diagnostics to be carried out. Or it is simply chance that you have another problem that is to be examined, and in the process the diagnosis “aneurysm” comes out. And when I really think about it: in my past I have been X-rayed once, I have also been in the MRI. But the chest area was never in view.
I am by no means an isolated case in the way I learned that I have this disease. It is actually, when I read everything I could get hold of, the normal case. In a forum that I quite like to read, this was reported quite often.
Biological plumbing
Okay, in the last part I now also said it openly, without obfuscation through the ICD code. An aortic aneurysm was found in me at the ascending aorta. What is that, then?
Before the rest of the text I want to make one thing clear: I am not a doctor. It is my layperson’s knowledge that I am passing on. My mental model of the last few years. It can potentially be completely wrong.
Maybe to explain the problem: with this I had a piping problem in my body. The body has a large main supply line that proceeds from the heart. The main artery. Also called aorta. The aorta is so important that since 2024 it counts as an organ in its own right. And rightly so, I think. Because without the aorta everything in the body is nothing.
It carries the blood from the heart to all the other arteries. Yet another organ that pupils will have to learn in future. I’m curious when that will find its way into school textbooks. Maybe with the children of my youngest niece, should she decide on a corresponding way of arranging her life.
So once again: the aorta proceeds from the heart. There, at the beginning, a kind of non-return valve is built in. The aortic valve. This ensures that the blood, after it has been ejected from the heart towards the body, does not flow straight back into the heart. Immediately afterwards the heart supplies itself from it with the coronary arteries.
On this occasion I also noticed how much school knowledge you actually forget. Back then I first had to look up again how exactly the heart supplies itself with blood. Advanced biology as my first major for Abitur? Jörg, shame on you. And yet to this day I remember the citric acid cycle.
This gap was probably the result of the mental compression algorithm that runs over the knowledge you have when you no longer need it for a long time. And until 2018 I hadn’t really thought about it. Basically since my Abitur. Since 2018 my knowledge of the human circulatory system has increased rapidly. A gap relevant to laypeople will certainly no longer open up there until the end of my life. Because everything was to remain part of my life for so long that I will no longer forget any of it.
Although there is an interesting question: why is the citric acid cycle then still uncompressed in my head? No idea. For that there are usually even fewer everyday applications.
So: even the heart itself depends on the aorta. It proceeds from the heart a bit upwards. That area is called the ascending aorta. It describes an arch; there, for example, the head and the arms are connected. That is sensibly called the aortic arch. And then it bends downwards and becomes the descending aorta. It goes very far down. On its way through the body it divides. It supplies, for example, the kidneys, the liver. Everything is somehow connected to it. Well, except the lungs. They have their own blood circuit (note: I am not a medic, it may be that something else is not attached either. As I said, my advanced biology was a while ago …).
For something so important, the aorta has no noteworthy redundancy. There is no second aorta. I find the whole body astonishingly unredundant anyway. No second liver. No second pancreas. No second spleen. No second heart. There is only one aorta. But for that we have two lungs, two kidneys, two eyes, two arms, two legs. The Architecture Review Board for the human being seems to have been a little inconsistent there. Probably two design teams were involved. An Enterprise Human Group and the YOLOops Division …
The bit upwards from the heart is, as I said, called the ascending aorta. Logical. It ascends, after all. And there my aorta was noticeably widened. Pathologically widened. That is nothing other than what “aneurysm” means. It is the pathological widening of a blood vessel. That is not a phenomenon limited to the aorta. You may have heard of aneurysms in the head. They can also occur in other places.
Why it widened? Presumably blood pressure. Classic stretching-out. Maybe predisposition. I always had somewhat high blood pressure, but not unusually high blood pressure, apart from the emergency. It is all a little puzzling. There are genetic dispositions for it, but I am an isolated case in my family. So I assume that I am not affected by this genetic problem.
I also harbour the suspicion that my long-practised way of lifting or, for example, of paddling in a dragon boat contributed to it. Valsalva breathing. That also raises the blood pressure, after all. And at some point it has just stretched out.
Honestly, I don’t even want to know it that precisely. To this day I don’t. Which surprises me. I conduct root-cause analysis at a depth that one could almost call “up to a fault”, but precisely here I never wanted to ask too deep, to drill too deep with further examinations.
The aorta has a normal range with regard to its diameter. That lies somewhere around 2.5 to 3.5 cm. Although I have to be given the benefit that I am taller and the aorta may perhaps be a little wider in my case, with 48 mm I had significantly exceeded the expected width. That was more than two standard deviations away from normality. With that I was officially a carrier of an aneurysm. Even if my doctors, because of my height, for a long time first declared it an ectasia (that is a widening that is not yet an aneurysm). No matter what it was, no matter how it was named: it was a problem.
Okay, so the aorta is wider than normal. Other people have a big head, protruding ears or big feet. What is the problem? The disease is not entirely harmless, and that has to do with the vessel walls and the forces acting on them. A guy called Laplace and his findings are important for that.
As Wikipedia writes: “With constant blood pressure, the tension of the vessel wall increases as the radius becomes larger. Since the greater tension leads to further stretching, a vicious circle results, which can culminate in the tearing of the vessel wall with life-threatening bleeding.”
Life-threatening is meant very seriously here. Imagine the main supply line of a city bursts. No water arrives anywhere anymore. Or only very little. While in the city you can perhaps make do with a bottle of water, in the body it looks completely different. The body does not cope for long if the blood stays away. The brain copes for about three minutes.
At some point the tension of the vessel wall exceeds its ability to take it up. It breaks. And that is the problem. Tear or dissection. Death by internal bleeding. Mostly. Often. Very quickly.
Although the human body is sometimes positively miraculous here and people survive findings that are usually only seen in pathology. I know of cases where a rupture was survived and could be repaired in time. But one should not bank on being such a case. That is goddamned luck with a complete wiping-out of all the karma points you have ever collected and will ever collect. That person should do nothing more in their life that somehow burdens the karma account. At least that’s how I would handle it.
But what is important is: none of that has to happen. People also find their way to pathology who died at a blessed age of something else, but in whom, at the autopsy, an aneurysm of “what the hell?!?” size is found. But there are also people in whom the aneurysm bursts well below the size that my aneurysm had in 2018.
It is not an exact science. As the radiologist said when I brought up the measurement inaccuracies and comparability of the methods: “This is not a steel pipe that can be measured exactly. And it doesn’t always behave the same.”
Every method of measuring has its advantages and disadvantages as far as accuracy is concerned. Although MRI and CT are actually already quite accurate. Ultrasound in principle too. In any case: the factors influencing when the aorta ruptures or a dissection starts are manifold.
Science is getting better and better there at the prognosis of how high the risk is that the aneurysm could burst. They have moved a little away from rigid diameter thresholds; by now they have arrived at methods that estimate the risk on the basis of body surface area or, better, body height. Because it has been found that 48 mm at 1.92 m has a somewhat different risk profile than at 1.50 m body height.
But, to my layperson’s understanding, they are still searching for what is ultimately decisive for a catastrophic outcome and measurable from the outside, in order to ensure that everything that follows medically takes place only in those who really need it. Because the treatment sounds simple, but is not entirely harmless.
I assume that at some point simulations will be calculated that will be able to compute the probability of a rupture on the basis of the measured flow conditions, wall thicknesses and god knows what.
What do you do then?
Everything that follows medically meant in my case in 2018: little. At first one stays conservative. Strict blood pressure control. Watchful waiting. That is the kind of diagnosis where at first one does nothing intervening. At least if you are not yet at certain aortic diameters.
Because the solution is: it gets operated on at some point. Remember what I wrote about where the problem is in the body. Not exactly easily accessible. The operation very complex, because here things have to be shut down that one actually urgently needs to live.
This operation is not just done casually, but reference values have been defined for it as to when one proceeds to the operation. Back then this limit was at 55 mm. It still lies there today, although there are apparently by now more reasons to operate earlier too.
One waits for the point of intersection of operation risk and rupture risk. And that is usually at 55 mm, because the risk of rupture rises rapidly above 55 mm. In the statistics there is really a very marked tipping point there.
Now the intervention in this case does not necessarily mean rummaging in an open upper body. There are various methods of getting rid of the aneurysm, depending on where the aneurysm is located. Cutting it open or with a catheter from the inside. Catheter by now works quite well with the descending aorta, if I understand correctly. But that’s not where my aneurysm was.
At the spot where I had it, in patients of my age they work with “cutting it open”, because there are enormous challenges with the endovascular (so from the inside with a stent) removal of this problem at this spot. That is how the cardiologist in Koblenz also explained the replacing to me. In other words than the ones I have chosen, of course. They are still researching the treatment with stents. Had I discovered the aneurysm at a time at which one usually discovers it, around ten years from today in the future, that might have looked different.
But as it was, I had to live with the medicine of my time. Endovascular removal at the ascending aorta still means today: it is possible, you can do that. Somehow. With stents that are actually intended for something else. But because of the associated risks, that is only done in patients in whom the risk of an open operation is even higher. Unacceptably higher. At the moment it is more a means of saving the 85-year-old grandparents who would die during an open operation. Not to spare a fifty-year-old patient in good general condition some unpleasant parts of the operation. And it doesn’t always work with the stents either, if I read the research correctly.
The open operation, as far as I understood it, is plumbing work at the very highest level. A piece of pipe is simply replaced. The piece that is widened. A special prosthesis goes in there. It is even called a tube prosthesis.
But just as you have to turn off the water with the main line threatening to break, with this operation you have to immobilise the heart. Since the body doesn’t find it so great to live more than three minutes without a circulation, you go onto a heart-lung machine. And the whole thing is behind ribs that also first have to get out of the way. So all not a pleasant affair. An affair in which things can go wrong. Many things can go wrong.
By now there are other approaches that make the open operation less invasive insofar as, for example, the heart-lung machine is dispensed with. In this, the widened aorta is not removed and replaced, but supported from the outside with a fabric, so that it cannot widen any further. The procedure is called PEARS and has only been offered in Germany since last year, although it has actually been used elsewhere for some years. The procedure takes a few risks out of the equation. But the method did not yet exist in Germany in 2018/2019. It is really only available here in a few clinics since 2024 (I know of one, a second can be found on a website of the manufacturer of the wrapping). In it a really personal wrapping is woven, which is then laid around the aorta in the operating theatre and sewn on. Without a heart-lung machine. Very interesting, very exciting method. Which unfortunately, however, doesn’t always work.
Back home
Back to the year 2018: at that point, on that day in Koblenz, I was still 7 mm away from that. So no case for a dramatic being-pushed-into-the-operating-theatre, being flown to the nearest heart clinic or being opened up right there in the emergency department. The way you sometimes saw it in “Emergency Room”. There is, after all, the scene where the receptionist turns out to be a vascular surgeon from Poland – who was not allowed to work as a doctor in the USA – who opens the chest in the ER and patches a ruptured aneurysm so that the patient had a chance. Unfortunately you never saw that person again in the series.
My reading of diameter was not yet worthy of an operation. And since one can do nothing immediately and I was, basically, fine again (my blood pressure was, already the next day, such that one could ask whether all of that had only been a bad dream – not normal, but okay), I was discharged from the hospital in the early afternoon. I said goodbye to the nurses and carers of the ward and left the hospital. And the first thing that happened was a little bit of despair. I still remember it very well.
Why did I feel a little bit desperate? I might still have been 7 mm away from a very severe operation, but on that day I was 500 km away from home. I stood, sleep-deprived, in front of a hospital. My car in a car park about a kilometre away. I pulled my wheeled suitcase along behind me. It clattered on the cobblestones. And probably annoyed the residents. My whole support system was the said hundreds of kilometres away. And I first had to come to terms with a really bad piece of news.
I have quite good friends in the area, but I didn’t want to burden them with it. It was not full-grown despair. I teared up a bit to myself. How else should one react in such a situation. Even if you present yourself as so hard-boiled.
I have learned that it is helpful there to first get the emotions out of the system and then to tackle the problem. And the most inconspicuous thing for me was a brief shedding of tears in that moment, to get the feeling of powerlessness out of the system. After all, I couldn’t scream the world together there in front of the hospital. Even though it was on the tip of my tongue to scream a loud, resounding “shit” out into the world. Gladly several times too. Had I screamed out what was going through my head back then, birds would probably have fallen dead out of the trees in fright and mothers would have covered their children’s ears in panic. And those would nevertheless have learned an exquisite selection of new swear words.
I needed some kind of valve, so I chose the most inconspicuous one on my way back to the car.
I already wrote: the aneurysm is, in many medical series, a tension-building element that is gladly used. When that comes, in the aftermath faeces have just flown in the direction of a fan and hit it. That is then really very big trouble. And now I knew that such a thing slumbered in my chest. I didn’t want a tension-providing screenplay construct in my chest. Or, put differently: the screenplay of my life had suddenly gained a lot of tension.
And it is so uncreative. How often the aneurysm is used by uncreative creatives in the screenplay department only strikes you when you have it yourself. Because you regularly flinch at this word. The rule seems to be: we need pressing, time-critical tension – let’s just take an aneurysm. No matter where. In the MCU you would probably take a brain aneurysm that Dr Strange repairs with a bit of wire and a Hilti. In Grey’s Anatomy two doctors probably confess their love by the heart while the surgeon is just hand-deep in the patient’s chest and “Chasing Cars” by Snow Patrol is played in the background. In House M.D. it is probably an aneurysm that presses on a special spot, but only if you bounce on a trampoline in moonlight and then leads to fainting. House then shows the effect with his walking stick.
The thing about the sudden noticing is like with blue Citroëns, old Citroën HYs or toffee-brown (I described the colour differently) Tourans, which also only become noticeable when they were important for a short time. You wonder why they only now diffuse into the brain. Or why you only then notice number plates from the other end of the republic in Hamburg, once you have been there yourself (and aren’t so dozy that you think: “Oh, a car with a Munich number plate. Maybe a company car” … in Munich. In my defence: I was still rehearsing in my head the talk I had to give in about 20 minutes).
The return to Lüneburg was not entirely unproblematic. After all, I had not slept. Simply getting into the car and driving 500 km was therefore out of the question. The first thing that occurred to me was: the family distribution list. And my brother, without thinking, offered to pick me up from Koblenz together with his partner, to solve the problem of how I and my car would get away from Koblenz. That’s why the train was out for me. I didn’t want to fly like that either, but my flight for that day was cancelled anyway. I would also somehow have had to get the car away from there. And I didn’t assume that I would drive to Koblenz again within a few days.
In any case: it all worked out well. But it also shows how my siblings tick in such cases. No “That doesn’t suit me right now” or “I don’t feel like it at the moment”. But simply a “We’ll make it possible”. And for that I am infinitely grateful. My family is like that. I would also do that for my siblings at any time.
At some point, in the late evening of 26 November 2018, I was then in Lüneburg. At the end of my mental strength, emotionally completely drained after the events of the last 24 hours. But home. From there I first went to my parents and reported on this night and this day. Because I didn’t want to sleep yet. I couldn’t sleep either. Despite the largely sleepless night. I first wanted to tell the people around me what had happened. So far they too only knew that I had been in hospital and that I had a problem. Which I also had to explain.
Tomorrow on the blog, though, I will first explain how the situation afterwards became quite strange at first, before a certain normality set in. And why, in fact, to this day I don’t really know why everything at first went sideways.
