Spontaneous coronary artery dissection: we are the patients (2024)

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Article history

An interview with Becks Breslin and Sonja Reckschwardt, two patients suffering from spontaneous coronary artery dissection (SCAD), treated in the UK and Germany almost 10 years apart.

Acute coronary syndrome (ACS) is a prevalent reason for admissions, accounting for over 20 million visits to the emergency room in Europe and North America.¹ Among the many ACS phenotypes, SCAD is increasingly recognized as the underlying mechanism. Compared to other patients presenting in the coronary care unit, patients with SCAD are younger, more often women with less or even completely without cardiovascular risk factors. Furthermore, treatment is mainly conservative and there is little scientific evidence for the medical management leading to insecurity among both patients and healthcare professionals. We were introduced to Ms Becks Breslin as the patient representative in the steering committee of a planned clinical trial (‘APT-SCAD’), and Sonja Reckschwardt is to serve on the patient advisory board of that same study. We are grateful that these two women were willing to sit down and have a dialogue for SciencePulse about their perspectives as young women suddenly admitted as heart attack victims. Their experiences and insight are sobering but can help hospital and rehabilitation workers to improve care.

1) Being at a young age a heart patient, what were your initial thoughts when they told you, you had a heart attack?

Ms Reckschwardt: I thought “That cannot be! I have no risk factors!”. Then I thought “Ok, now I know what I have. It is better than a few days before when the chest pain started and I didn’t know what was going on”.

Ms Breslin: I was 34 and had the same experience. I woke up having this crushing chest pain. And then as my symptoms kind of progressed I had a feeling that it was a heart attack. But it didn’t make any sense. The same as Ms Reckschwardt, no risk factors. I was some time in hospital before anyone really said the words “heart attack”. So for a while I felt like “is that really what happened?” It’s totally out of what I was expecting.

2) What were your thoughts when you heard that you had a rare disease that nobody knew much about?

Ms Reckschwardt: When I came to the hospital I thought “Heart attack - it’s a normal thing”. Then I thought “They are not sure what is best to do and apparently there are different approaches”. But the medical staff was quite open about their insecurities and communicated this with me. But since I left the hospital, I am unsettled by the fact that the cause is unknown.

Ms Breslin: At the time, I had already been working in clinical research for a decade, so I was aware that medical research plays an important role. I remember Prof. Adlam saying to me “You probably won’t meet another person with SCAD, it’s that rare!”. I thought “That sounds ridiculous!” and I partly denied that something like that could happen to me. I think disbelief and denial were probably the strongest emotions. In the early days the fear that it could be happening again was overwhelming but luckily subsided over time. I know people that have had several SCAD events. I remember when I still was in hospital that I had repeated episodes of chest pain and I was convinced “it is happening again!”. So that is what you must learn to live with when you have ongoing chest pain after SCAD. In the first few months there were a few occasions where I wondered if I needed to go back to the hospital. You feel like you have lost a little bit of control over your life.

3) Regarding follow-up, you are in two different phases. Ms Reckschwardt had SCAD last year, and you have your 10th anniversary, Ms Breslin. How did it change your life?

Ms Reckschwardt: First I thought “I will heal fast” and then there were many downs. There was always that fear that something may happen again. I noticed every symptom and change in my body very intensely. That unsettled me. Initially, doctors told me that upon experiencing symptoms, I should immediately stop exercising. During rehab in 2023, a stress ECG was performed, which showed abnormalities, even though I didn't have any complaints. That made me even more uncertain. In January 2024, another stress ECG was conducted with normal findings. From then on, things started to improve a bit. I still experience episodes of chest pain without doctors being able to find anything. That's why I think a big part of it is happening in my head. And my therapist told me that I must accept what happened. And maybe this will help.

Ms Breslin: I recognize what Ms Reckschwardt is describing. And I remember thinking that the recovery took much longer than I expected. I was off work fully sick for 4 months. Then I started with 2 hours a day which was a desk job at home. I was exhausted every day. I think it was probably a year before I really started to feel like myself again. I was given tablets to reduce my blood pressure and my heart rate. Adjusting to that you have to deal with the compromise of being forced to slow down. And the psychological impact is huge. It’s great that Ms Reckschwardt talked about her therapist. That can be a very deciding factor in your recovery progress. You’ll have good days where you’ll think “I can do what I want to do” and then you’ll be reminded “You are not ready yet”. For years I have now done what I want to do, and I feel fully recovered. But I don’t want to do skydiving or crazy high adrenaline things … that’s not my life choice. I think overall I had a bit of a lucky escape.

4) Both of you did attend a cardiac rehabilitation programme. How was it for you?

Ms Reckschwardt: It helped a lot because I was out of home, and everything was organized for me. I was able to exercise under controlled conditions and received advices on social and psychological aspects. I was also able to speak with many other patients. Not with the same condition, but with similar experiences.

Ms Breslin: I did also find it helpful. Just to sort of build a certain confidence and pushing myself in a safe environment. I remember a lot of patients that were much older than me. When the messages are mainly about altering your diet and quitting smoking - things that don't necessarily apply to SCAD - you might get the sense that it won't be beneficial for you. It can be tricky for a small rehab team if they have lots of different types of patients, but it is very important for a young person to know that the treatment has some element of target relevant to what happened to them.

5) Did you feel involved in your treatment and care?

Ms Breslin: Initially maybe not. I saw so many different people coming in. Obviously, all the student doctors were being brought in to look at the rare patient. It was really the moment when Prof. Adlam came in to see me because I had this chest pain that really distressed me. That was a real turning point for me because he spoke to me about SCAD, and he did quite openly say “We don’t have all the answers yet. We are trying to wait; we think it will heal”. So, I think those explanations brought a huge amount of reassurance and helped me to understand. I was fortunate to have Prof. Adlam as my cardiologist at that time. It is so important to be treated by a cardiologist who has that knowledge about SCAD. It makes such a big difference.

Ms Reckschwardt: At the hospital yes. They explained what they were doing, why I had to take the medicine, and what they knew about SCAD. But after I left the hospital there were changing doctors during follow up. Each time, I had to explain again what I was dealing with and how I was feeling psychologically. While they had the documentation, the foundation of trust was missing.

6) How can we do better in patient care taking your disease into account?

Ms Breslin: It is difficult for hospitals to manage the issue of changing doctors mentioned by Ms. Reckschwardt as it depends on the shifts for who you see but I think that consistency of care is important so careful reading of notes would be helpful. It can be quite exhausting as a patient to have to go through it all again. I don’t envy doctors as there are so many rare diseases in the world and you can’t know about all of them but there are general principles to implement to help identify them. I suppose the important thing for the individual patient is when you are that rare patient that physicians spend a little bit of time to find out what they can to support and advise. Otherwise, the patient can feel that what is happening to him is not important. As with everything, communication is key.

Ms Reckschwardt: Maybe you can give more resources where you can get information about SCAD and how to get in touch with other patients.

7) How has it been for you in follow-up care after you left hospital?

Ms Breslin: It would typically be a general cardiologist and not a SCAD specialist. Often that follow up has not felt particularly beneficial. Patients have built up a lot of questions and I think the need at that point to see somebody who is more of a specialist in SCAD can be important. We’ve got a SCAD clinic in Leicester, but the demand is huge, and it can take a long time for patients to receive an appointment. I think that need of expanding SCAD knowledge is quite a high priority.

Sonja Reckschwardt

Becks Breslin

Supplementary material

Supplementary material is available at European Heart Journal: Acute Cardiovascular Care online.

Data availability

Data provided are available and any required links or identifiers for your data are present in the manuscript as described.

Reference

Author notes

Conflict of interest: none declared.

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Issue Section:

Sciencepulse > Acute Coronary Syndromes

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