Sudden Cardiac Arrest

[B7ackGr3yh0und]

Hello, I'm new here. 39-year-old female, I had a sudden cardiac arrest at the beginning of December 2024. I have congenital heart disease (ventricular septal defect, pulmonary stenosis and transposition of the great arteries) but since my surgery in the 1990s I had done well and stayed healthy and stable. As you can imagine, the cardiac arrest was a shock and the cardiologist has just put it down to 'one of those things which can happen in congenital heart disease'. My husband had to give me CPR and the paramedics had to shock me, and our young daughter has been a bit traumatised by it all too.

I was given an ICD and am on betablockers now, my meds are being titrated. I seem to be stable again (for now), but physically and emotionally I'm very up and down. Some days I feel relatively OK - almost back to normal in terms of general functioning, although still very breathless on exertion. Other days I feel pretty awful - really tired, low, nauseous and frankly quite lost (I think there might be a link here to general tiredness and menstrual cycle). I have naps almost every day and am signed off work (I work from home and it's not a physical job but it is emotionally demanding). I've been told recovery can take up to a year (and I'm not guaranteed a full recovery). I wondered if anyone has been through anything similar? I'm not sure what I'm after to be honest, whether it's emotional support or practical support or just someone else to say, 'Yeah, something like that happened to me and I went through similar'. I have joined Somerville Foundation and am waiting for psychology support, but I don't know anyone else in my position so I don't know what's 'normal', what's not, what to expect and what I should/shouldn't be doing. As I said, I just feel quite lost at times.

[Chinkoflight]

Hi , that's tough and an awful time of year too which I'm sure contributes to the mental health challenges. Dark days have a lot of time for dark thinking. I'm a much older bloke and me preSCA history was a stroke two years earlier out of the blue. I went on a health improvement programme taking up running at the age of 70 and found I loved it. A new lease of life then the SCA on a parkrun 12 months ago. Like you an ICD implant.

I think although the implant is a relatively low invasive surgery technique, I think in combination with the down time and the impact of the event it takes its toll and recovery for me was about 4 months. However, unlike after my stroke, the uncertainty about what triggered the SCA is always there, well still is 13 months on, so I'm less inclined to push myself. There is no guidance on acceptable boundaries for exercise, other than the useless don't overdo it!!! What does that mean?

I also focus a lot more than I did on my day to day well being. I wish I didn't but I can't seem to stop it. I feel the presence of the ICD almost all the time and especially at night.

I know things will improve as summer comes and I have just done two consecutive Parkruns , but only walk/jogging and keeping my HR down.

I obviously can't say about hormonal issues, but your overall description chimes.

I have posted about this before. I am surprisingly more a glass half full person, and can counsel myself out of this state of mind and focus on positives and being proactive. But I do think some physical changes are real and to be lived with.

You're not alone but an ICD coupled with your other heart issues makes you a member of a very exclusive group. Perhaps the BHF support nurses might give you some advice and support.

[B7ackGr3yh0und in reply to Chinkoflight]

Hi, thank you so much for taking the time to reply. For some reason I can't log on using my phone and I didn't get my laptop out at the weekend, hence taking time to reply.

I'm so sorry to hear of your SCA, especially after the trauma previously of a stroke. And it happening while you were on a park run - how awful, not that there's ever a good time to have one. At least there were other people around at that time. I guess we have to remember that we're one of the 10% who survive a cardiac arrest, so we're lucky in that sense.

I completely agree - although the ICD insertion isn't highly invasive, the events that lead up to it and the downtime have a big impact. I find the medical use of 'downtime' quite ironic, as beforehand I would've associated it with something relaxing such as reading a book or having a bath, which is certainly not what happened!

I think it's brilliant that you do park runs, and I think keeping yourself fit is the best thing you can do. It's interesting you should say that about there being no guidance on exercise, I recently joined the Somerville Heart Foundation for adults with congenital heart disease and there is a recorded webinar on there about exercise, delivered by a physio. If you're interested, I can send you some slides from the presentation (I took some screenshots) but I don't think it's available to download - I will look again though. The essential messages that I took away were:

- build exercise up slowly

- interval training (such as is taught for Couch to 5K - alternating between moderate and lower intensity) is recommended rather than HIT (alternating between high intensity and breaks)

- exercising so you can 'walk and talk' at the same time (so it feels OK to carry on but you're still pushing yourself) is the right intensity

- do resistance/strength training 2-4 x a week, alternating between muscle groups, starting with 8-10 reps. No need for weights, or if you do, use light weights.

I agree though, 'don't overdo it' is pretty useless advice! It sounds like you're doing really well with building up exercise though - walking/jogging sounds like the right intensity.

I'm also conscious of the ICD, especially at night. I'm more used to it during the day, but I find I'm very protective and don't want anything near it! I was hoping it would start to feel like part of my body but it still feels like an alien device I have to put up with.

Thank you for your advice. I'm waiting for psychology support from the hospital which will hopefully help, but I just wanted to reach out to others in a similar position in the meantime. It can be quite lonely, can't it?

I think 4 months is a great recovery time. It's been 3 months for me so far and I'm signed off work for another month. I think I'm getting there, though. As my GP reminded me, recovery is not linear, there are ups and downs. I do fully understand the uncertainty about what caused the SCA and I think that's the worst thing for me. Especially as, like yourself, I'm generally quite a healthy person - I used to walk 30 minutes a day, would eat sensibly and was a healthy weight before this. If I could attribute it to an unhealthy lifestyle I think I could accept it more - that's something within my control to change. I just have the congenital heart disease to blame it on, even though my heart was functioning well before.

You're right about dark days. I have noticed my mood has improved a bit now we're in early spring. I did a bit of light gardening at the weekend and feel so much better for it. Onwards and upwards, eh?!

[Chinkoflight in reply to B7ackGr3yh0und]

Hi, thank you too. I'm so glad I responded, as you say we are on the exceptional side of statistics, hence your limited response! It's so helpful to me to hear your story too.The advice on exercise is good and are part of my mantra's ,

Exercise at a conversational pace

No pain, no pain ( as opposed to the old no gain!)

It's a run not a race.

I have considered resistance training but get no real enjoyment from it, but gardening is good which I love.

It's possible to send stuff individually through messaging, I think you have to click on my page. Happy to receive the information that way, but don't worry if it's too difficult. You also must be very busy.

Do reach out at anytime if it helps.

But in the meantime onwards and upwards, I have my 12 month monitoring in a new hospital on Wednesday.

Take care

Nigel

[SCA_UK]

That sounds like such a familiar journey — you might find real comfort and connection at the SCA UK "10 Years Together" Conference on 17th May 2025 in Hinckley. It’s a chance to meet other survivors, share experiences, and hear from expert medical professionals. 💜 Find out more and sign up here: scauk.org/10YT — we’d love to see you there!

[Chinkoflight in reply to SCA_UK]

Thanks for the link. I've been around the site this evening and "applied" to join. I was struck by the number of people mentioning "idiopathic" in their journeys! It's the broken record of my journey that makes moving on so difficult.If only some #chinkoflight could shine on idiopathic!

[B7ackGr3yh0und]

Hello, this looks great. Are family members able to attend at all?