Heart Surgery & Symptoms

[AdamJames157]

Hi everyone,

Hope you’re all doing well.

I’m still waiting on heart surgery seven months after diagnosis. I have an enlarged heart and severely leaking aortic valve.

My symptoms are mainly visible and include physical pulsations (neck, groin, pounding heartbeat and I am also experiencing some pain in my left rib/ back area. It’s difficult to sleep sometimes as I can feel pulsations/ heart them.

I’ve also noticed my heart rate getting lower again. I was previously very fit and my resting heart rate was typically 40-50. I haven’t done any vigorous exercise for a long time but I do walk at least around 8-10k most days still.

I have no breathlessness thankfully

Appreciate everyone is different but for those who have had symptoms, did anyone experience anything similar?

[Adhtz21]

Write to the CEO of your hospital trust. It worked for me. I wrote a ‘letter of concern.’ My operation was very quick thereafter.

[AdamJames157 in reply to Adhtz21]

Thanks. I will try that. What was the issue with your heart and did you experience any symptoms?

[Adhtz21 in reply to AdamJames157]

Hi Adam, I had severe aortic stenosis due to a congenital bicuspid aortic valve. I also had an aneurysm of the ascending aorta. My symptoms started as some breathlessness walking upstairs but then culminated in my experiencing a syncope when on holiday after pushing some cases up a hill. After that whilst on the waiting list, I had some pains between my shoulder blades as well as breathlessness on any exertion at work. Sometimes even sitting in the chair at home during the evening I would feel like I had been running in the wind. My aorta was quite enlarged and after my initial assigned locum surgeon had left the hospital my new surgeon was quite honest and mentioned there was a large waiting list in fact the department was in ‘a bit of a turmoil.’ Under his breath he muttered something about April being the likely operation time but I had initially been told Christmas / early January. I checked the hospitals performance figures for cardio thoracic surgery and they were publishing 12 weeks from referral to operation when other regional hospitals were much longer waits. So I wrote to the CEO outlining my concerns and within a week I received a telephone call detailing my pre-op and operation date within a total of three weeks from my letter. There was a study completed in Wales (albeit that I am East Mids) and this highlighted the fact that patients were often dying whilst on the waiting list for surgery. Definitely write to the CEO as the time that you have been waiting is ridiculous. Good luck. It’s a strange situation as whilst not really relishing an operation, I was in effect fighting to get one. I’m so pleased that I did write the letter. It’s a shame but those who sit back and do not moan often get overlooked. The operation was fine. I had never had an operation before and mine was over 7 hours or so long as I had my aortic valve replaced and the aorta root to tip replaced with a Dacron tube. My cardiac thoracic surgeon was a fantastic and very experienced consultant. I was fortunate to get him. I asked for him when I heard my previous locum had left after reviewing all the available statistics provided by the hospital on their website. He actually published his statistics. Only a few did. All the best!

[Khartoum7]

I reiterate what Adhtz has said....those who make a nuisance of themselves get results! And after you've had your op and are recovering insist on cardio rehab too.Good luck.

[Anon2023]

Hi. I emailed my surgeons secretary and asked what the risks were of being on the waiting list for so long and my concerns about the damage being done to my heart while I was waiting. My surgeon forwarded my email to the head of his department and my operation followed shortly afterwards. It’s worth a try.