What’s up doc?

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…

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?

ICD’s

  • 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?
  • 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

We hope you find these useful and if you have any further suggestion for questions please let us know.

#RESUS2020: The ERC virtual congress

FREE Survivor sessions at the ERC October Virtual Conference!

Earlier in the year, we announced that our annual conference was going to be part of the European Resuscitation Council Congress but thanks to COVID-19 that got cancelled.

ERC | Bringing resuscitation to the world

However, the ERC has not been idle and have recently announced that they will be holding a virtual congress between the 22-24 October 2020.

Whilst the target audience of the congress is primarily professional, they have kept in the inaugural survivor’s tract of sessions entitled “Surviving cardiac arrest”. These sessions are organised in conjunction with SCA UK and Dr Tom Keeble of the Essex CTC and are aimed at survivors, families and other interested parties.

Presentations

The survivor’s sessions will take place on Saturday 24th and the preliminary programme is as follows (but is subject to change)

  • What it’s like to survive a cardiac arrest
  • Survivor networks
  • Trapped in a disrupted normality
  • Improving recovery from cardiac arrest
  • Impact of COVID
  • Memory problems post-cardiac arrest
  • Returning to Life
  • Psychological support

You must register to be able to take part in the congress but for survivors and family members, it is FREE.

All the presentations will be pre-recorded which means that those who have registered can watch them before or after the scheduled broadcast time. The sessions will be a brief summary of the presentations and a discussion led by the moderators – those joining to watch live can ask questions during the sessions

Survivors’ Sessions Timings

Part 1 – 08:30 – 09:30

Part 2 – 12:00 – 12:55

Part 3 – 13:00 – 14:00

You can see the full 3-day congress programme here, but remember many of these are for resuscitation professionals and may not be suitable for survivors or other laypersons.

Tired of being tired

Cardiac arrest survivors report many issues post-event (sequelae) and the one most commonly mentioned is fatigue. With this in mind, we set out with Donna Malley, a fatigue expert from the Oliver Zangwill Neuro Rehabilitation Centre to create a resource for survivors and their family members to help them understand the problem and give them some pointers as to how to improve their situation.

Part of that resource will include input from survivors and so we recently undertook a survey to understand how fatigue had affected survivors of a cardiac arrest. We had a fantastic response with 230 replies within a couple of days, obviously, this is a subject that survivors want to talk about!

The Survey

First up, were questions on whether they had been warned about having fatigue and whether they actually experienced it post-arrest.

And only 1 in 5 were warned that they might experience fatigue

Fatigue doesn’t just mean being physically tired, it can also mean being mentally or psychologically affected too, so we asked how their fatigue manifested…

It’s clear that fatigue can affect people in a variety of ways and that it also has a big impact on their daily lives…

Ranging from 1 (very little) to 5 (a great deal)

Good news?

There is a smidgen of good news though, as around 1/3 report that their fatigue has got better with time. We didn’t ask what that time frame was, but anecdotally it can be very variable and obviously factors such as age and previous levels of activity have to be taken into consideration.

The underlying mechanisms of fatigue after a cardiac arrest are not well understood by the medical world but we asked what the survivors thought their fatigue was down to. There was a multitude of responses with the primary ones being the following…

Help

And again there was a host of things that people thought helped with their fatigue, but the following were the primary ones…

Survivors were asked if they had picked up on any good resources that had helped them through their recovery and along with our site being mentioned quite a few times the following were also listed:

  1. Headway
  2. Brain Injury Hub
  3. Synapse and Brain Injury Australia

As mentioned above, fatigue is still a bit of a medical mystery and so we asked what would survivors like to know about it. Obviously the most common answer was about how to get over it, but it’s also interesting to note that just having some information and being warned about how it might affect someone would be of great value. This is not just for the survivor, but also for partners and family members who have to deal with the consequences of the fatigue. Having an idea of what “normal” is and having guidance on tried and trusted techniques to help cope, and information on how to regain fitness in a controlled manner rather than the boom and bust cycles that many seem to go through would be of great benefit too. There were also comments on how the impact of fatigue can knock on to things like a healthy sleep pattern, whether diet can improve things and how to incorporate things like afternoon naps into work schedules.

Our final question was whether they had any tips or advice for other survivors and many common themes cropped up with some very sage advice:

  1. Listen to your body and brain and make rest a daily priority
  2. Take your time, rushing makes it worse. Wait for your body to really feel that it wants to try things that used to be the norm.
  3. Try to learn to understand what your body is now telling you as your body’s requirements have changed i.e. how much sleep you need, what food and drink to have and when. How often you need to take a break etc
  4. Check with your doctor whether it is your medication causing the fatigue.
  5. Rest when you need it and don’t feel guilty!
  6. Try not to feel guilty about the way you’re feeling, accept your body is different now.
  7. Open up to family, friends and medical staff. Try to connect as soon as possible with other survivors
  8. Be patient, persistent and most importantly, kind to yourself.
  9. Do what suits you and your situation. No two survivors are the same and what works for one may not work for another.
  10. You’re not lazy!!! Learn your limits, and if you’re going to exceed them, be ready for the crash, plan for it and accept it may happen. Don’t let fatigue, or the threat of those crashes, stop you enjoying life, but do listen to your body when it needs downtime.

Conclusion

The results were quite clear, fatigue is a big issue for survivors and it’s an area that needs to be looked into more, whether that’s just giving good solid information or helping them adapt and create coping strategies and we hope our forthcoming leaflet can help in some way.