Rob de Vries has had thrombophlebitis since he was thirty

April 2, 2024

‘I want to be the director of my illness’

Rob de Vries (71) has had thrombophlebitis since he was 30 and has also had abdominal vein thrombosis and pulmonary embolism. The many hospital visits have taught him one thing: use doctors as valuable advisors, but remain in control.

He knows that he is not always the easiest patient for a doctor. For example, Rob de Vries informed a phlebologist (vascular specialist) that as far as he was concerned, nothing needed to be done about the varicose veins in his legs, despite a gastroenterologist who advised otherwise. De Vries knew from experience that ‘messing’ with his veins would certainly cause a vein infection. The phlebologist eventually agreed with him.

“I certainly don’t mean it in a nasty way, but that’s how it often goes: you go to the doctor with a vein infection, are sent to the hospital where a doctor’s assistant pinches your leg. But what good does that do me? I experienced it exactly like that. The specialist eventually said that there was nothing they could do for me at that time, but because of all the squeezing of my inflamed leg, I went home in much more pain than I came to the emergency room with.”

Assertive
“Now when I go to the hospital because of a phlebitis, I tell them exactly what I want: an immediate specialist who can tell me when I need to come back because it is becoming too risky. And no one touches that inflammation. One doctor looks at me in surprise when I am so clear, but that phlebologist, for example, said: ‘I wish all my patients were as assertive as you are.’

I don’t see doctors as the ones who decide about my body. I do see them as valuable advisors. I want to be the director of my illness myself. And that’s why I also want to know the risks, know what exactly happens. My experience is that there are more and more doctors, especially the younger ones, who actually enjoy talking to a patient in an equal manner.”

Familial
“The first time I got a phlebitis, I was thirty. I already knew it from my father, who also suffered from it a lot. So it is familial. The vein infections most likely arise from the hereditary Ehlers-Danlos disease (EDS), which makes my connective tissue unusually stretchy and flexible. For example, I can push my fingers further back than I should. Connective tissue also normally protects blood vessels against infections. Apparently this doesn’t work well because of the EDS.

I have discovered over time that I am extremely sensitive to intravenous action, such as putting in an IV or drawing blood. I then get a big bruise and a vein infection. That is why I preferred not to be helped with those varicose veins. That would definitely give me inflammation.”

Quite laconic
“In addition to the many vein infections, I have had a abdominal vein thrombosis and pulmonary embolisms. I was diagnosed with abdominal vein thrombosis in 2013. I was initially quite nonchalant about it, because I was used to something being wrong with my veins. The specialist told me to realize that it was very serious and to take it easy. After a career as a director in the medical world, I was a councilor in IJsselstein, but resigned from my position after the first term. Since then I have only done fun things.

I was prescribed the blood thinner Xarelto, ten milligrams, for prevention. That went well until I started having chest pain four years ago. After an ECG at the GP, I ended up in the hospital’s cardiac emergency room. The cardiologist couldn’t find anything, but after a final test the pulmonologist was at my bedside. Three quarters of my lungs stopped functioning due to pulmonary embolisms. I told the pulmonologist that he might see it as a lung problem, but given my history I saw it as a thrombosis problem. He agreed with me. He then increased my Xarelto to twenty milligrams. The higher dose means I have to pay even more attention. We have two dogs and when I play with them I sometimes get a tooth stuck in my hand. That will bleed a lot. For the rest, things are going well. I suffer from vein infections less often. All in all, it’s quite possible to live with it.”

Thrombosis occurs at all ages. Read more about it in our magazine.

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