Being a survivor is a privilege, for the most part of human history, people like us have not previously existed. It was not until later part of the 20th century that science and medicine came together to be able to start saving cardiac arrest sufferers in substantial numbers.
As well as bringing people together for events like the recent #RESUS2020 conference, the ERC also produces guidelines at intervals of approximately 5 years. They are accepted in most of Europe as the standard of care and the reference for clinical practice.
In essence, it is these guidelines that have shaped the health systems of Europe so that people like you and I can survive an event that would have previously ended up with an unhappy ending.
These guidelines are not perfect but are the best understanding of the science and knowledge that has credible evidence, and as such, it evolves as these do.
SCA UK was borne out of a meet-up in a pub in February 2015, which coincidentally was the same year the last guidelines were published. When we gathered in that pub, we were there as strangers but were pulled together because we all had essentially the same experience of what I now know as the Chain of Survival. The links of the chain were executed such that the survivors amongst us became that, survivors; and the partners, family members became life-savers. We have the guidelines to thank for that. However, it was a common theme that our experience since leaving the hospital was at some odds to the previous excellent pre-discharge care.
It was through the formation of the SCA UK facebook support group that it became apparent that our experiences weren’t just isolated cases and that we had come together because we wanted a moan. There were numerous others going through many of the same ruminations and sequelae, and it seemed that there had been a common lack of focus on the last link in the Chain of Survival – “Restore quality of life”.
Whilst these guidelines are probably going to be too late to make a difference to you directly, you can pass on your luck and expertise of the “Life After Cardiac Arrest”. Feeding back from the perspective of someone who has that lived experience is invaluable to the professionals in helping them shape the future care of our peers. Let’s use this chance!
The guidelines are a hefty volume but helpfully the authors have broken it down separate documents focusing on various aspects of resuscitation. The Post-Resuscitation document is quite lengthy in itself and contains much that is perhaps best left to the professionals to comment on. However, it does contain a section on the “Long-term outcome after cardiac arrest”. This is very much of interest to us, as survivors, partners and families as this area of care are what has been somewhat lacking for many.
I’ve extracted out the aforementioned long-term outcome section into a separate document for your ease of reading.
As a cardiac arrest survivor your cardiologist may be the most important physician you have in your life. Getting time with them can be vital to aiding your recovery but we know they are much in demand. So, if you get an appointment, it’s vital to know what to ask your cardiologist when you see them.
With that in mind, here are some of the common questions you might think about asking your doctor…
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?
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?
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?
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?