Can someone please help. A recent echo shower I have left ventricular strain with severe aortic regurgitation and dilation.
Nothing is moving forward and I’m feeling increasingly unwell with heart palpitations all the time and really bad pain in neck, etc. not sure if it’s tension or not.
Dear AdamJames157
So sorry to hear that you are still waiting for your operation, but having read your post I don’t really know how I can help you other than to tell you that you are not alone and the waiting game can seem like time has stood still.
The longer the wait the more the anxiety builds and yes your pains could be down to that but then only your Dr can answer that.
Contact your heart/team Cardiologist secretary and see where you are on the list, you could put yourself down on their cancellation list but you have to be ready to move fast for this.
Remember to use 111/A&E if those pains get any worse
Good luck with it all, we are here to help the best we can, take care
Thanks for your reply. Appreciate the info.
Do you have left ventricular strain?
Hello, no I ended up having a bypass and now waiting on a Pacemaker, strangely the valve were ok, take care you will get through this, Im a lot older than you………
I have severe mitral valve regurgitation causing the same. My urgent operation was cancelled the night before operation after being in hospital for two weeks...that was before Christmas. Thankfully, my meds have kept me fairly stable and initially the anxiety of being back home away from the safety of the hospital really frightened me.....however....I am still waiting for my operation and have finally been told I am number 6 on the list as a priority patient and op could be within next 6 weeks....over 20 weeks wait if it does happen then. I have tried to keep myself as occupied as i can and have a different mindset now. I have got used to the waiting and I try to be positive. Make sure you have contact with the cardiac team or a cardiac nurse. Have you been allocated one? Keep phoning the waitlist team ...i am no longer worried about becoming a pest and I check every couple of weeks what is happening with regard to op. I was reluctant to do that initially but now think I am entitled to know. Anxiety and stress can make the wait seem much worse but can also bring about imaginary pains....evenso, don't hesitate to call doctor or hospital if you are worried. BHF are fantastic too and are very helpful if you have any concerns or questions....just ask. I check my own blood pressure, weight, oxygen levels etc with my own monitors which again can indicate changes that need addressing. Don't be frightened to ask questions or address any concerns you have. I really hope you get sorted soon and wish you all the best.
Many thanks for your reply. I’ve been constantly phoning the cardiac team and my cardiologist secretary.
Unfortunately it’s difficult to get hold of them at times. I more concerned about symptoms as I’ve got really bad pulsatile tinnitus due to turbulent blood flow and I’ve noticed my heart rate increases now.
I’ve also got heart palpitations. Not sure if you have them or not. I can actually see my left nipple move.
I’m hoping to get things sped up and will certainly take your advice on board.
How do you cope with the in between bit (the wait) and the thought of the operation?
All the best.
My diagnosis was a complete shock...I initially went to doc with what I thought was a thyroid problem ...long story but the diagnosis for me was a real shock. I only got palpitations a little while before being hospitalised but they were severe quite suddenly. Medication has helped enormously along with diuretics....if you have any fluid build up this could also be making things feel worse. I had geared myself up for the op whilst in hospital and asked so many questions and felt strangely calm the night before the intended op so having it cancelled at the last minute was so upsetting. Coming home and waiting was really scary at first but I have come to terms with the fact that worrying and being anxious makes it all feel so much worse and isn't going to resolve anything or make the situation any different. I have made myself as knowledgeable as possible about my condition...only from the correct sources like BHF ....my partner will not discuss anything with me because....believe it or not he finds it scary!!!! ..so little support there...my daughter is brilliant but I try not to worry her too much with it all so I went on a sole mission myself. The op frightened me so much but I now view that as hopefully the road to normality. Over the weeks I have more understanding of my diagnosis and what the op involves. Still all a bit daunting but I can't change anything. The surgeons are all experts in their field and mine replied to me when I asked about risks....he said it's far more of a risk if the op isn't done than if it is. Even though I've had to wait I try to remain positive that I will hopefully have normality back and remember each day what the surgeon said. Don't be frightened to ask questions....don't be frightened to be a 'pest'. Try and keep occupied with things....I have never been a gardener but have been planting and watching veg and things grow...very therapeutic....get out in the fresh air, especially now the better weather is coming....do things that bring a smile and don't dwell too much on things that don't. Bit of a long answer but hope it helps.
Not at all. It's a brilliant answer. My diagnosis was pretty shocking too. I was very ill back in 2020 (thought it was covid). I was in and out of bed and on pain meds all year. This kept going on. I then went to a get a colonoscopy and endoscopy as had issues with my bowels (turned out it was nothing and prob due to the medication I was on).
My partner then woke me up one night and my heart was racing. So i tried to get a gp APPT and was told no you're young and fit.
Anyway, I went to see a private cardiologist who initially said that I was fit but might have high blood pressure. Fast forward another two months and I was diagnosed with severe leaking bicuspid valve and then in Feb MRI showed dilated LV, Hypertrophy and Severe aortic leak. I started developing symptoms in Feb which is off putting and I can now feel my heart in my chest. Heart rate has increased too so an indicator something should be done sooner than later.
I like your tips off how to keep your mind off things. I will certainly try them. I take it you don't get tired at all and have no other symptoms?
Morning AdamJames157
It can be frustrating having to wait to see the cardiologist or even get them test results back then we all end up getting anxious which doesn't help matters.
I have mild left ventricular hypertrophy, bradycardia and mitral valve regurgitation and feel rubbish some days with no energy.
The cardiologist stopped my bisoprolol 6 wks ago as he wants to see my resting heart rate without any meds but its still low at 39bpm and will jump to 170+ for no reason and im now having bouts of high blood pressure too which is have never suffered with before.
I'm getting a 3 day ecg monitor fitted next month and the cardiologist said if my pulse is still low he will fit a pacemaker or I can just live with the palpatations and ectopic/irregular beats.
Good luck, try not to worry and keep us informed on how you get on.
Thanks for this. I just think the waiting might make things worse. I went for an ECG and it said left ventricle strain or inferior ischemia. I’ve got severe aortic regurgitation with a dilated left ventricle and some hypertrophy.
Obviously concerned the longer it goes on the worst my chances will be.
Where is your operation getting done? Mine will be Aberdeen or Edinburgh most likely.
Have you spoke with a consultant yet?
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