Diagnosed with all the arrhythmias and a 40% ejection fraction and I'm a little confused about what's to come...

[Alana84]

Hi,

So (I'll try and keep a long story short) 8 years ago I was diagnosed with breast cancer, I had chemo, radiotherapy and surgery. 3 years ago I gave birth to my son and (in lock down) I'd walk for miles and miles with him in a sling. Around 2 years ago, while pregnant with my daughter, I got tired and then breathless and I had a cough I couldn't shake, and then I could barely get out of bed. I was told it might be pregnancy asthma (not a thing) and try some inhalers. I got sent to A&E several times but no one thought to check my heart. Labour was an emergency C-section, I lost two litres of blood but recovered really well. Ever since then I've been OK, then tired and breathless, OK, then tired and breathless. Then I got chest pains earlier this month, I went to A&E (who referred me to a cardiologist) and it turns out I have atrial flutter, atrial fibrillation, a left bundle branch block and an ejection fraction of 40%. , they put me on some mess immediately, which have helped enormously and I've rushed out to buy a watch I can't afford (technically can but it's tight) so I can have informed conversations about what is happening to my body.

My blood pressure and resting heart rate have always been low, I've always been healthy - I think it's just that pesky lifesaving chemo that's triggered all this, exacerbated by pregnancy.

I guess my question (yes, finally!) is what does all this mean back in the real world?

I've got a three year old and an 18 month old to look after each day (and they're not the chilled out quiet kind 😂). Will I be able to run a half marathon again one day? Can I go back to wild swimming one day? (the question I really don't want to ask or have answered but I guess I do) will I see my children grow up?

I've been through a lot, I'll give up and change anything to be here for my kids and my husband no question at all. Even Yorkshire pudding if it comes to it!

I'd love to hear from people who are further down the line please x

[EU95PTM]

Hello and welcome to this forum. I’m sorry to hear of your recent diagnosis, that must have been a big shock.

Whilst I’m not in exactly the same position as you in terms of the cause of my heart problems, I can reassure you that often things can improve with the medications on offer these days. I had an EF of 39% around 18 months ago following a heart attack, but with a whole heap of medications it is now in low normal range of 55%. I will need to take medication for life. Hopefully you have an excellent care team around you to support and guide you in the coming months.

It is normal to feel scared and uncertain in the early days but there is support out there. I can highly recommend the Pumping Marvellous charity. They have a website with excellent, easy to understand literature as well as a supportive Facebook group. Do look them up as they really helped me, especially in the early days of diagnosis. No question is too.

Wishing you all the best.

[Alana84 in reply to EU95PTM]

Thank you so much, that is incredibly helpful 😊

I am sorry you're in this club too but it sounds like you're improving really well x

[Squoozy]

Hello, I don’t know if this helps but my husband has had bundle branch block, atrial fibrillation and an ejection fraction of around 33 % following a heart attack 6 years ago. He had a pacemaker fitted (currently on waiting list for a new one), and although his ejection fraction has never improved he still does everything he did before and more (walks several miles, goes skiing, carried grandchildren on shoulders all the way all the way around the zoo on Christmas Eve). He does get tired, but generally exercise is good and we have been told he should expect to live a ‘normal’ life span. I hope this helps. My one piece of advice is to push for the best possible treatment. If you read up and find something that might help ask for it. Medications are so good these days, make sure you’re on the right ones for you and that you are seen regularly by the consultant or his team. Be proactive and aware of your condition so that you have a good idea what’s best for you. I wish you health and happiness with your lovely family x

[Alana84 in reply to Squoozy]

That is incredibly reassuring, thank you so much ❤️

I hope your husband gets his new pacemaker soon, his grandkids sound incredibly lucky to have a man like that in their lives x

[Alixia]

Hello Alana, I’m a 39yr old woman with an ejection fraction of 48%, slow heart rate, complete heart block and atrial flutter. My symptoms are caused by an underlying genetic condition called LMNA cardiomyopathy. Has anyone in your family had heart issues relatively young? Have you been given a formal diagnosis?

Treatments I have received are an ICD implanted for my slow heart rate and complete heart block. It helps my heart beat more efficiently to raise my ejection fraction. After meds didn’t work, I had an ablation for the atrial flutter earlier this year which has been successful.

The diagnosis, new terminology, hospital visits etc. are intimidating. I try to educate myself as much as possible so that I can have meaningful conversations with my cardiologist. I am reviewed every 6 months and am given a clear plan of treatment each time I go.

In general I do everything I did previous to being diagnosed, including swimming and exercise, just not as vigorously. I’ve cut caffeine from my diet as I found this affected my heart rate. I was very careful and a little fearful when I first got my ICD implanted, but quickly took the attitude that the treatments are here to improve my life and I should make the most of the health that I have, not mourn the health I have lost.

[Alana84 in reply to Alixia]

Thank you, that is good to hear - I'm glad your treatments are working for you x

My nan died of a heart attack at 64, but she was a very heavy smoker. I told the cardiologist but I guess we'll find out of it's relavant later down the line as we do more tests.

[Cruiser25]

Hi Alana 84, following a fairly substantial HA, I was left with an ejection fraction of 38% immediately following the event. This was 21 months ago, then 3 months after the HA another echocardiogram and still @ 38%. Fast forward to Sept this year, a Stress Cardiac MRI with contrast and .... an ef of 41%! However, with the meds and exercise, taken religiously I go to Parkruns on Saturdays (weather allowing) still attend a follow on cardiac class on Mondays and have built a gym in the garden and work full time, so with care and meds, hopefully you'll be hanging around for many decades to come. A bit of light-heartedness aside, the Docs and other staff are brill, yes you may need to dig in a bit to get the attention and the right care, but there's no need to doubt that better times are ahead. Good luck and enjoy all the good times ahead.

[Alana84 in reply to Cruiser25]

I'm so sorry to hear you had a heart attack, that must have been scary - it sounds like you're making the most of every minute though, I'm quite envious of your garden gym!

Thank you for replying, it helps me see I'll get back to fitness - maybe even do a park run! (I did a half marathon once but I was never very good at 5ks - I've always been more tortoise than hare 😂)