I was actually really lucky – the diagnosis was quite fast

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Stephan, 45 years old

"At first I just had slight back pain and thought I had strained something. It didn’t occur to me that it might be something dangerous. But eventually I had to sit upright all the time because I couldn’t breathe in a lying position. Luckily, the doctor reacted straight away."

It all began five years ago when I had my appendix removed. The procedure itself went well but the hospital care afterwards wasn’t very good. The ward was chaotic and the staff had too much to do.

I didn’t have any experience of hospitals or the processes surrounding surgery, so I didn’t even notice they hadn’t given me any injections to prevent thrombosis after the procedure.

I was discharged after three days, and I went on vacation to Austria with my family a few days later. I had asked the doctors and they’d said it was okay. It was a long drive to the Austrian mountains, where I was originally supposed to be going skiing. That was no longer possible, of course, but I wanted to at least get some rest and spend some time outdoors. After the shock of having surgery, I’d been looking forward to getting away.

It started off with slight back pain

My back started to hurt a bit on the second day. I had pain around the back of my ribs, right in the middle, between the spine and my side. I thought I’d strained something so I tried to fix it by stretching. But that didn’t work.

The pain got worse and worse. I wasn’t having trouble breathing, though. At some point, I couldn’t lie on my back anymore and I had to lie on my side. Eventually, I couldn’t lie down at all. I had to sit upright all the time because the pain just got worse otherwise, and I couldn’t breathe in a lying position. I’d never experienced anything like it before.

The next day, the pain was unbearable. I broke out in a sweat and felt sick. That’s when I started to worry. So I went to the local doctor, whose job is normally tending to skiers’ broken bones.

Luckily, he reacted straight away and gave me a thorough examination with a blood test and an ultrasound scan. He raised the alarm as soon as he got the results of the blood test. He told me to stay lying down because they thought they knew what was wrong. But they didn’t tell me what it was. I now know that one of the blood test results was very high and I had an abnormal level of .

I didn’t realize until later how critical my condition was

They took me to the next hospital, where they did an ultrasound of my legs to see if there were any signs of thrombosis. They also did a scan of my heart. That is how they found out that the right side was under a lot of strain and having to do a lot of pumping. Then I had an MRI scan and the was clear: pulmonary embolism.

They put me on a drip straight away to give me medication to break up the clots. I was also given heparin to prevent further blood clots, plus some strong painkillers. I developed in both lungs due to the embolism too, so I had to take for that. But I was safe after that.

I was shocked when I found out later how dangerous the situation had been. It took me a while to get over the shock. But I was actually really lucky. I’d been hiking on my own at 2,500 meters a few times at the beginning of the vacation. If I’d had problems then, nobody would have found me.

The doctor reacted really well too. He made sure I got an MRI scan quickly so we got a fast .

There was no clear cause: No thrombosis, no clotting problems

After eight days, I was transported back to my home town. I was supposed to be treated in a hospital there because it was important I stayed lying down. But there weren’t any beds available so I went straight home and made arrangements to have outpatient care.

A blood vessel specialist examined me to try to identify what had caused the embolism. They wanted to find out why it had happened at such a young age and without any risk factors.

They looked for signs of thrombosis straight away, but didn’t find anything in my legs or in my pelvis. They also checked for a genetic blood-clotting disorder but didn't find anything there, either.

It was probably the long drive that did it. If I’d known, I would have taken more breaks, moved around more and drunk a lot of fluids.

I took a blood thinner for almost a year as a precaution

I didn’t recover fully straight away after the pulmonary embolism. I took things easy for a year and had to increase my physical fitness gradually. I didn’t go out much either, and didn’t go to places where there wasn’t any health care. That didn’t feel safe enough.

I had to take a blood thinner for ten months to stop any new clots forming. It was quite a new drug and I didn't have any trouble with it.

The doctors at the hospital and my blood vessel specialist said different things about how long I should take the drug. That was a bit confusing. In the end, I decided it was safer to take it for longer rather than not long enough.

I felt quite nervous when I did stop taking the blood thinners because I thought I might get pulmonary embolism or thrombosis again. But that hasn't happened. So far, so good!

Having to take a blood thinner wasn’t easy

I had to be very careful when I was on the blood-thinning medication. I had to avoid any injuries because there’s a higher risk of bleeding more. So I wasn’t allowed to do any high-risk sports. It took a while to get used to having to be so careful. But I gradually started worrying less.

And I basically feel normal again now. Thankfully, it hasn't had any long-term effects on my health. The only thing I have to do is go to the blood vessel specialist for check-ups.

My advice: Keep moving when on long trips!

Whenever friends go into hospital for surgery now, I say, “Make sure they give you anti-thrombosis injections.” That is always the first thing I say.

You don’t always know beforehand whether blood-clotting disorders might run in your family. You don’t find out until you actually develop thrombosis or pulmonary embolism. Young people are especially likely not to think about it. To give you an example: A friend of mine went on a long-haul bus trip. He sat still most of the time and then he developed thrombosis.

My advice to anyone who has to spend a long time sitting on a plane, train or in a car is: get up frequently and keep moving! Get your blood circulating. Make sure car journeys aren’t too long. And if you do have to go on long trips, make sure you drink a lot of fluids and get some movement.

It really isn’t just old people with heart conditions that get pulmonary embolism. Young, athletic people like me can get it too. At the end of the day, I was very lucky.


Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Created on December 13, 2022

Next planned update: 2025


Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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