Playing competitive sports all your life, eating super healthy and yet getting hit with a heart problem. For Paul (47), there’s only one answer to that: genetically, he’s drawn a bad fate. Just try to deal with that. Especially when you are back home after treatment and are left with so many questions and fears.
Why is this happening to me? How do I make sure it doesn’t happen a second time? Does it mean that your healthy lifestyle then makes no sense at all? Paul: “By having a healthy lifestyle, I actually gained a lot of time before I was affected. I keep exercising because it just feels good. But my wish is to be able to do that again without pinched buttocks. Everything you feel now you throw on the scales of the heart. That won’t go away, but once I accept that, it will weigh less heavily.”
His father was stricken with serious heart disease at age 32, something that had a great impact on the entire family. “Since I was a child, we were always concerned with heart problems. We were waiting for the Sword of Damocles, especially when my brother also developed heart disease at a young age.”
From a young age, Paul himself has been very sports-minded. “I work as a sports instructor, have always played top sports myself, and basically everything always went well.” And precisely because of his healthy lifestyle, Paul assumed he would not be taxed. Until he noticed that his performance in sports was deteriorating. “Where I was always able to keep up well as a 40-year-old, suddenly my fitness went downhill.”
With extreme back pain and chest pain, he reported to his family doctor. An MRI of his back showed nothing, but an ultrasound at cardiologist showed calcification (plaque) in the carotid arteries. ‘With your sports history I am not going to let you do a cycling test, you have a very strong heart. But because of your family history, I want to do a ct scan,’ that was what the cardiologist said to Paul. That ct scan showed three blockages in the anterior coronary artery. “It was a complete shock moment. I’m 47, have been exercising all my life and eat vegan. How is that possible?” Paul was immediately referred to the hospital, where a cardiac catheterization followed.
“Sir, you are ready and can do everything again. With your heart you can now run ten marathons,” the cardiologist joked, after Paul received a stent in his coronary artery and was sent home with medication. But things turned out very differently. When Paul returned home to exercise, he collapsed.
In the ambulance, the medication to lower his heart rate, a beta blocker, turned out to be the culprit. As a result, Paul’s heart rate became so low that he nearly passed out. “I didn’t dare exercise anymore, didn’t trust my heart rate. That gave a huge dent in my confidence.”
All those questions and fears also led to sleep problems. “I couldn’t cope, it was really going in the wrong direction. Asked the family doctor for help, but he didn’t see it as trauma. The psychologist had a waiting list of a year, so I didn’t get help.” Eventually, a checkup appointment with the cardiologist became Paul’s salvation. “I live with so many fears, I told him. He was the first to hear me and do something.”
The cardiologist agreed to a blood test. This showed that the lipoprotein A level in Paul’s blood was very high. This Lp(a) is a form of cholesterol that increases the risk of cardiovascular disease and can accelerate the process of artery calcification. “So it’s not because of diet or lifestyle, I immediately thought,” he said. The cardiologist referred Paul to UMC Utrecht, where Lp(a) cholesterol measurements are part of the UCC-SMART study on risk factors that may explain the onset of cardiovascular disease at a young age.
At the Vascular Medicine outpatient clinic at UMC Utrecht, more help arrived for Paul. During an intake with the nursing specialist, he shared his fears. “I get so scared sometimes that I turn on ‘location sharing’ on my phone when I take out the trash. Then if I go flat, at least my family knows where I am.” The internist signed Paul up for a rehabilitation program. “Rehabilitation has brought me a lot because I’m exercising in a group with people who are all in the same boat. Everyone has so many questions, you share that with each other.”
Through the social work department, Paul was also able to join a support group with people under 55 with heart problems. “You can be really honest there and find that you’re not the only one with fears. We learn to deal with it with coping mechanisms.”
By now, Paul is doing a lot better. “I’m not there yet, but I feel so much better mentally. A world of difference. The only thing I want is to stop being constantly busy with my heart. The bottom line is that I can exercise all I want, but my veins end up slipping. That’s genetically the bad fate I’ve drawn, you have to put up with that.”
Medication counteracts the clotting and Paul is being monitored. With his story, he wants to make others aware. “I hope that other young people with heart disease in the family will also ring the bell with their family doctor for such a blood test. At least then you are prepared and then you can take steps. I am very happy with the Vascular Medicine clinic, where I really get all the help I need now, and with the UCC SMART study.”
In persons younger than 55, cardiovascular diseases are rare. When young people do suffer a heart attack, stroke, aneurysm or peripheral vascular disease, there are often many questions. What type of vascular disease is involved? What are the risk factors? Is there a hereditary predisposition and increased risk in family members? And above all, what treatment options are available to minimize the risk of recurrence?
Are you younger than 55 years old and affected by cardiovascular disease and do you have questions? Then visit the premature vascular disease consultation at the Vascular Medicine Outpatient Clinic of the Cardiovascular Center UMC Utrecht. Ask your general practitioner or cardiologist for a referral to our outpatient clinic.
