Breathless, palpitations, upset stomach, thirst and unable to sleep

[Winniesmum]

hi everyone I hope someone can help

I had open heart surgery 10 months ago to repair my mitral valve.

I subsequently had AF and was told my ejection fraction was 40. Since then my EJ has improved a bit (still not in normal ranges) and the AF has gone. I have however continued with a high percentage of ectopic beats.

Over the last few months I have had increasing episodes of breathlessness, palpitations and agitation at night to the point of not being able to sleep all night. This is very often accompanied by diarrhea and thirst.

I’ve been to the dr who has checked bloods and run an ecg and everything seems ok but these episodes are really getting me down and I’m becoming extremely anxious.

Has anyone else experienced the same? I don’t want to keep going back to the dr but I need to address this as I’ve had to give up work and it’s impacting my life too much.

Thank you

[DodgyTickerMum]

Hiya,

I too, had O.H.S 10 months ago, but unfortunately needed a valve replacement during the surgery. Also went into A.F post op - went back into a sinus rhythm 2 wks later, my E.F still isn’t what it was pre surgery and have constant ectopics and extra systoles. So, quite similar to yourself.

Have you had - or can you request an Echo, either via your Cardiac Rehab Nurse or via a G.P referral back to your Cardiologist? I’ve had several of these now post op and they do provide much more information on your heart’s recovery than an E.C.G.

It could be that your medication needs tweaking? I was put on Dapagliflozin in November to try and increase my heart’s E.F. - which it did help out with.

I would definitely seek medical advice if you’re symptomatic. It’s possible the medication is causing the stomach upsets. I hope you manage to get some answers.

[Winniesmum in reply to DodgyTickerMum]

Thank you for your reply. I had an echo a couple of months ago which showed a slight improvement in my EF but I have had to give up work which included the private health care I was receiving. I am due another echo in a couple of months but am now waiting for an NHS cardiologist appointment with no idea about how long that might be.

I have been taking Dapaglaflozin along with Bisoprolol, Furosemide and Spironolactone since November and they seem to be ok. I am on very low doses as my heart rate is very low and when they tried to raise the doses, I felt too awful.

I am starting to think the nighttime episodes are panic attacks as I am quite anxious about my health now and am good at distracting myself in the daytime.

Thank you for your advice, it’s good to hear from someone who has had a very similar path! I would really welcome another echo to put my mind at rest but a I guess I’m at the mercy of the NHS waiting lists.

[DodgyTickerMum in reply to Winniesmum]

My Dad (who has heart failure) is also on Spiro & Furosemide - which often also affects his tummy during the night. Maybe mention the side effects to your G.P?

The Dapagliflozin & Bisoprolol will both lower your B.P (which is what happens to me and my already low B.P anyway - and can make me feel rubbish). To counteract this, I take the Bisoprolol at night (so am laying down anyway if dizzy) and take Fludrocortisone (to raise my B.P) with the Dapa at lunchtime.

I know what you mean with regard to the worry of our situation and the enormity of what we’ve been through. But I’ve found this group really helpful - knowing that their are others out there, some younger, some older - who have all walked in our shoes, their health has improved and they are living their lives. I think that is the mindset I need to adopt now - having been through this hugely unsettling experience but made it to the other side.

Like most of the members on here - I’ve still got ongoing heart issues post op which will never change but, I’m just so thankful now, that I got to have my surgery when I did and I can try and put last year behind me. Hope you can too. ❤️‍🩹

[Winniesmum]

thank you so much ❤️

[Hugomum]

Hi WinniesmumI also had OHS in May last year. Replaced valve , Aortic Aneurysm, tear, hole and clot. It has been a tough time since. I have AF but it seems to have settled at present but still get really bad palpitations, unable to walk without stick,vocal palsy, nerve damage, breathless, bad edema and pneumonia twice. Admitted to hosp at least 8 times since due to LBP, AF, chest pain and collapsing.

Currently waiting for CT scan and 72hr monitor results from this weekend.

I have also been unable to work since my operation, applied for ill health incapacity pension but declined as not seen to be ill enough (possibility of being able to do any job before 67 from finance act 2004 which has been quoted to me). I am appealing but had to go private as NHS lists are too long as have a tight time scale for appeal.

Was a middle manager (tech and communication) in a very large business - absolutely devastated to say the least as l am the main income in household

Here if you want to talk anything through.

[Winniesmum]

I’m sorry to hear about your journey. It sounds like you have had an incredibly difficult time. I really hope your CT scan and monitor show some positive news.

I am trying to see not working as an opportunity to focus on my health and wellbeing and am trying to get more active and have enrolled on italk with the NHS which is providing some sessions involving resilience for people with long term health conditions. I haven’t started yet but am hoping they will help with the anxiety and stop these nighttime panic attacks.

Thank you for sharing your story with me and for your support ❤️