Having a strong relationship with your cardiologist can be critical to recovering after a sudden cardiac arrest (SCA). As many as 80% of SCA survivors are diagnosed with a heart condition like cardiomyopathy, making their heart doctor one of the most important members of their care team. But with limited appointment times, it’s vital to make the most of every visit. This guide will equip you with the must-ask questions to get the information you need to understand your heart health and optimize your outcome. Let’s dive in so you can take charge of your SCA recovery!
Primary
- What is the best way to contact you if I have any future questions?
- If I can’t get hold of you who should I contact?
- Why did my cardiac arrest occur?
- Where can I find out more information about this?
- What damage, if any, has occurred?
- Am I at risk of it happening again?
- What can I do to stop it happening again?
- Why was I diagnosed as idiopathic and what more can we do to find out the cause?
- How does my family history affect my heart health?
- Will genetic testing be required? (for me? for my family?)
- Are my direct family members at risk of it happening?
- Are tests for my direct family members applicable?
- Will my level of risk change over time?
- What symptoms might indicate a worsening of my specific condition?
- Will the symptoms I am experiencing now change over time?
Treatment
- I experience [pain/dizziness/personality changes/emotional swings/anger/low mood/anxiety] – is this normal and can it be treated?
- What are my treatment options?
- What are the alternatives?
- What if I don’t want any treatment?
- How often will I need to see you and why?
- What should I do if my symptoms get suddenly worse?
- Are further tests applicable?
- Why are you prescribing this particular treatment/medication?
- Why are you prescribing this particular dosage?
- Will the dosage vary over time?
- How long will I have to take this medication?
- What are the side-effects of taking this medication?
- Are there any medications, foods, drinks, supplements I should avoid?
- What lifestyle changes can I make to help my situation?
- Will my current stage of life (age/pregnancy/menopause etc) have any influence on my treatment plan?
- Will the fact I have [x] affect my risk or treatment plan?
- Who else might I get referred to?
- How soon will I be able to see them?
- Can I still have other forms of medical treatment, such as an operation or MRI?
Sport and Activities
- What precautions do I need to take now I’ve had a cardiac arrest?
- Will I still be able to exercise or take part in sports?
- Are there any activities I should avoid doing now?
- Do I have to keep my heart rate within a certain range?
- Can I wear a Fitbit/Apple Watch to monitor my heart rate?
- Should I get a fitness tracker/heart rate monitor if I haven’t got one?
- What can trigger my particular arrhythmia?
- I love doing [x] – can I still do it?
- Will I get cardiac or another form of rehabilitation?
- If I don’t get any rehabilitation – why not?
ICDs
- Why do I have an ICD?
- Why do I not have an ICD?
- How long will my ICD wound take to heal?
- What restrictions are there if I have an ICD?
- How long does an ICD battery last?
- What does a shock feel like?
- What do I do if I get shocked?
- Will I get a home monitor? If not, why not?
- Who should I contact if I have an issues with my device?
- What should I do if I am unable to contact anyone about my device issue?
LIFE
- How do I explain what has happened and/or my condition to my family/friend/colleagues?
- Will I be able to work again doing [x]
- How soon will I be able to return to work?
- Am I ok to drive?
- Do I need to contact the DVLA?
- How do I ensure that my driving licence is only suspended and not revoked?
- What is the process to get my licence back and when should I start it to get it back as to minimise the time I am unable to drive?
- What can I do if I do not feel comfortable driving anymore? (see Access to Work/Bus pass)
- Will my condition affect my sex life?
- Will my menstrual cycle have any effect on my medications?
- Will I be able to get pregnant still?
- Are there any extra risks if I get pregnant?
- Do they know about Sudden Cardiac Arrest UK? If not, get them some of our leaflets so that they do and future survivors can benefit from our help sooner.
- Where else can I get more support about my condition/operation?
- Can I have a copy of my medical report?
- What does [x] mean on my medical report?
- How can I help in future trials or research?
- How important do you think it is to adopt new treatments and procedures?
- Can I still drink alcohol, coffee or other caffeinated drinks?
- Am I ok to travel/go on holiday?
- Will the heat or cold affect me more?
- Does my condition mean I am more vulnerable to Coronavirus/other illnesses?
- How can I get my confidence back in my own body?
- I think I or my partner/family member is having emotional/mental health issues because of my cardiac arrest – can I/we see a counsellor?
- How can I get a second opinion?
- I have Critical Illness insurance, can you help me make a successful claim on it
Asking the right questions and advocating for your health is key to getting the best care after surviving a sudden cardiac arrest. While appointments with your cardiologist are scarce, being prepared with a list of well-thought-out questions can help you maximize the limited time. Don’t be afraid to take notes, bring a support person, and even record the visit if allowed. You’ve already overcome the toughest hurdle – now it’s time to focus on healing. Joining a survivor community and online support groups like ours is also encouraged, so you don’t have to navigate SCA recovery alone. With perseverance and the right specialist on your team, you have the power to reclaim your health and thrive.
After our first meet-up in February 2015, I realised I was not alone. It was the first time since my cardiac arrest the previous year that I had spoken face-to-face with someone who had experienced what I had. This was also true for my wife, who also happened to be my lifesaver. From that meet-up, the idea of SCA UK was born. Since then, we have achieved a considerable amount, primarily providing information, resources and support to others in a similar situation but also raising the profile of survivorship and the need for better post-discharge care. We are starting to get traction in this, and with the formation of the charity, I genuinely believe we have a bright future ahead and will make a significant difference in the lives of many who join our ranks.