Lucinda Dodd was 24 when she had a cardiac arrest in her sleep. On this week’s podcast, she talks about the version of recovery that nobody has written a leaflet for.
Most of the people I speak to on this podcast had a settled life to get back to. A job of twenty years. A marriage. Grown-up children. A young cardiac arrest survivor has none of that yet, and it changes almost everything about what recovery looks like.
Lucinda Dodd was 24. She was living in London, working, and doing everything right, as she puts it. Then, on the morning of Christmas Eve, her mum heard a strange noise coming from her bedroom.
Christmas Eve, and the fifteen minutes that saved her
Her mother is a nurse with decades of experience. She pulled Lucinda onto the floor and started CPR. She kept going for fifteen minutes, with no response at all.
Meanwhile, her 21-year-old brother called 999. Her father froze in the doorway. When the air ambulance crew arrived, they had to prise her mother off her.
They shocked her eight times. On the ninth, her heart restarted. Then they worked on her in the house for over an hour before she was stable enough to move.
She woke up on Christmas Day.
“I just woke up in hospital on the other side of what had happened. Whereas my family were there witnessing it. I think in that moment it was my family that suffered rather than me.”
This episode is one of the clearest arguments I have heard for using the term “co-survivor”. Lucinda’s brother believed his sister was dead, made the call anyway, and has only started talking about it in the last few weeks. Her mother saved her daughter’s life, and then had to live with the memory of trying. As Lucinda puts it, co-survivors have their own healing to do, and their own story to tell.
The leaflet that was written for somebody else
Lucinda spent nearly four weeks in hospital. Apart from her, the youngest person on her ward of six was 72.
At some point, a nurse handed her a booklet about life after a cardiac event. She still remembers the headlines. One promised she would make it back for her grandchild’s third birthday. Another said they would get her fit enough for her 80th.
“And I just thought, what the hell? What about my 25th? What about holiday with the girls? It was so unrelatable and so uninspiring, and made me feel more isolated than the event itself.”
That is the moment that stayed with me, and it is why I wanted to record this conversation. None of that material was written for a young cardiac arrest survivor. So she left hospital unable to wash her own hair, with a new S-ICD under her skin, a six-month driving ban, two daily medications, and a diagnosis of idiopathic. Nobody knows why it happened.
Above all, she had nobody her own age to talk to about any of it.
What a young cardiac arrest survivor actually faces
We spend a good part of the episode here. If you work in cardiac care, or you write patient information that a young cardiac arrest survivor will read, this is the section to listen to.
- The medication maths. Lucinda takes bisoprolol and flecainide. However, nobody has sixty years of data on somebody starting these drugs in their mid-twenties. She has pushed hard, and successfully, to get her dose right. Even so, as she says, no clinician wants to be the one who signs off on stopping.
- A device for life. Not one replacement, but a lifetime of them. Battery percentages at check-ups still send her “spiralling all the way back to day one”. Questions about pregnancy and birth were never raised with her at all. Our page on how to respond to an ICD shock covers the practical side.
- Friends who had never lost anyone. Suddenly her peers were being asked to make sense of a 24-year-old who died. “I just wanted to shake them and say, I am still me.”
- The reversal. A flat and a career in London one week. Her childhood bedroom, and her mum washing her hair, the next.
- Grieving the decade. In her words: “I spent a really long time grieving my twenties, because everyone says this is supposed to be the time of your life.” If that sounds familiar, our page on trauma after cardiac arrest is a good place to start.
For the wider picture of how badly the system serves people after discharge, our post on why cardiac arrest recovery is the weakest link sets out the recent report in detail. Clinicians may also want our guidance on supporting co-survivors in clinical practice.
Canada, and the boundaries nobody meant to set
Two and a half years on, Lucinda has just come back from a month in British Columbia. First, two weeks in Tofino. Then a road trip in a Toyota 4Runner with a roof tent, including a week entirely off-grid in Wells Gray.
She arrived, looked at her phone, and realised there was no signal and no way of getting any.
“I had cold sweats, the hair standing up on every limb. If anything happens here, that’s it, I’m done. And that was a really hard moment, but also one of the best moments I’ve had. Because I suddenly realised I’d made it to this point without even thinking about it.”
She wrote about that trip for us here: No Signal, No Hospital: Off-Grid After My Cardiac Arrest At 24.
So I asked her where those boundaries had come from. Was it her, her clinicians, or the people who love her? Her answer is one of the most useful things I have had on this podcast.
“The doctors are telling you to be careful. Your family’s telling you to be careful. Your friends are telling you to be careful. You internalise so much of it, and you just naturally think, okay, this is my life now.”
Every one of those warnings was given out of love. Together, though, they built a wall that nobody intended to build. In other words, the world closes in around a young cardiac arrest survivor without anybody choosing to close it. Notably, she credits one consultant with the opposite effect: a surgeon who, when asked whether she could still scuba dive and skydive, did not hesitate to say yes. Our guidance on exercise after cardiac arrest takes a similar line.
Looking for another young cardiac arrest survivor
Three months out of hospital, Lucinda went looking for another young cardiac arrest survivor. She had found our support community, and she is generous about what it gave her, from getting her driving licence back to finding travel insurance. What she did not find was anybody at her own life stage.
“It heightened my feeling of isolation, because I wasn’t seeing anyone else my age. And I thought, okay, maybe that’s because there isn’t any.”
There is. We know there is, because they email us.
So Lucinda and I are now talking about what a space for younger survivors within SCA UK could actually look like. Her own answer, when I asked her to design it from scratch, was that it has to live where young people already are, and that it has to be about life stage rather than strictly about age. Someone who was 24 and working in London has more in common with a 34-year-old than with an 18-year-old halfway through their A levels.
If it happened to you when you were young, we would like to hear what you make of it. Nothing formal, and no rota. Just your view, because we would rather shape this with young cardiac arrest survivors than for them. Email [email protected] and put “young survivors” in the subject line, or say hello in the community and we will find you.
Listen to the episode
The Girl Who Died at Christmas, with Lucinda Dodd, is out now on the Life After Cardiac Arrest podcast. You will find it on Acast, Apple Podcasts, Spotify and wherever else you listen.
If you are a young cardiac arrest survivor yourself, the stretch from twenty minutes in is the part I would start with.
One word before you press play. This episode includes a detailed account of a cardiac arrest and a resuscitation, and it touches on bereavement and on some very low moments in recovery. It is an honest conversation, and a funny one in places, but it does not flinch.
You can also read Lucinda’s own writing at Lucinda’s Letters, and browse our cardiac arrest survivorship book library if her story leaves you wanting more.
And if you have been meaning to learn CPR
Lucinda is here for one reason. Her mother did CPR for fifteen minutes without giving up, and her brother knew to call 999 and go looking for the nearest defibrillator.
Fewer than one in ten people in the UK survive an out-of-hospital cardiac arrest, according to Resuscitation Council UK. The difference is nearly always somebody nearby who knew what to do. Therefore, if you have been putting it off, RevivR from the British Heart Foundation will teach you in fifteen minutes, free, on your phone.
Finally, if a young person in your family has died suddenly or been diagnosed with a heart condition, Cardiac Risk in the Young offers screening and specialist support. You can also check the current DVLA guidance on driving with a heart condition at gov.uk.
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.