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.

Good advice post-cardiac arrest

Getting good quality advice and information post-cardiac arrest is not always easy, which is why we have done various podcasts on the very topics that trouble survivors and their families the most.

Here is a selection covering fatigue, memory issues, beta-blockers, sequelae, rehab and help with having an ICD.

Available to listen on the links below or on SpotifyApple GoogleYouTube and your favourite podcast player.

Managing Fatigue with fatigue expert Donna Malley

Memory issues with world-renowned clinical neuropsychologist Professor Barbara Wilson OBE

Beta blockers and other medications with consultant cardiologist Dr Tom Keeble

Sequelae, LACA host Paul covers many of the common issues that survivors experience post-arrest

Rehab and post-arrest activity with cardiac fitness expert Angela Hartley

ICD Owners 101, LACA host Paul answers many of the common questions that owners of an ICD have.

From Resus to Smiling Again – The Journey Back

Friday 19 June 2020

It’s 12 weeks to the day since receiving my Medtronic CRT-D implant. My initial arrest was back on the evening of 29 January. So I’ve been fairly isolated for much of the time, brilliantly supported by my wife and two cats. What a time to be ill – in the midst of a global pandemic!

Like many others before me, I’ll say it’s been a rollercoaster – for me, my wife, my family. Hardly seen anyone face-to-face. Thank goodness for video conferencing.

I’m normally a very positive person. I’ve had a charmed life. Worked and lived across Europe for the European Commission for 14 years (Helsinki, Brussels, Madrid, Rome, Munich…).

I started in Fleet Street as a tea boy at 17 and took 4 years to get my National Union of Journalists card. After that, I was away! Being an editor of several international magazines (still am for a global business quarterly), so I have everything to live for as I approach 70.

Yet the night of 29 January turned out to be a real game-changer.

The amazing NHS brought me back to life. Dozens of people were involved. I can remember some of their names and have been able to thank one or two personally. They are all heroes. I am so lucky.

But I have contemplated the dark side more than once on my journey so far. I do remember feeling totally at peace in Resus, just before I was shocked. I could quite happily have just closed my eyes and drifted off – but the amazing senior nurse next to me kept quietly repeating: “Keep your eyes open, Freddie. Come on, keep your eyes open for me.”

I did for a little while. Later, having had a peaceful dream, I awoke to a team of about a dozen around me, wires, machines, monitors, all sorts of machinery attached to me. Felt like a robot! And there, having come back into the room, standing by my feet, was my wife. Looking very pale and worried. I gave her a double thumbs up. I knew I was going to survive.

So, how is it that I have had such terrible dark thoughts in the middle of the long winter nights? Sometimes during the dark times after the implant, when I was bruised and battered and hardly able to sleep?

I was recommended to Sudden Cardiac Arrest UK by a good friend who happens to be a senior A&E nurse in Southend Hospital. Kate, I owe you a real debt of gratitude for recommending SCA UK. 

This group has been a safe haven for me. Even when I’ve been at my lowest, a message of fear or concern posted to the group has always brought back positive, helpful, personal messages. I thank each and every member who has supported me along the recovery path.

I’m not okay yet.

I’m gradually getting my mobility back after parts of my body just seized up through lack of sleep, lack of exercise, depression…

But I feel I’ve turned another corner this week, am getting my sense of humour back and the bond of love between me and my wife, Linda, is stronger than ever.

I feel a bit like a fraud, to be honest. Others here have suffered much worse and been fighting back for a lot longer. Yet here I am writing a blog. Can I find some words of encouragement to anyone who might suffer an SCA and survive? Some sage advice?

Don’t be on your own.

Talk to those nearest to you.

Don’t feel guilty about explaining how you feel and what you have gone through.

Communication is so important.

Use the knowledge units in SCA UK. I am still dipping in every few days and learning and understanding more.

Through the forum I have accessed an experienced counsellor and I begin with her next week, by video consultation. I’ll check back and let you know how it goes.

In the meantime, stay positive, smile and get on with your new life.

You deserve it.