Marcuse807
Member
Hi All,
First off, just like to what a great resource this site is and how helpful I have found reading all your stories and messages of support.
Thought it was time to share my story. I found out I had a BAV earlier this year after a few torrid years. In Sept 2011 my wife and partner of 16 years found out she had terminal breast cancer. I pretty much spent as much time as I could caring for her. As her condition got worse I increasingly felt the stress. In May 2012 after doing some exercise I felt a sharp stab in my chest/ heart. I took an aspirin and went to bed. The next day and for weeks after I felt dizzy, had high blood pressure (160/98) and had chest pain so went to emergency. Blood tests showed I'd not had a heart attack, but I was referred to a cardiologist. He spent time to talking with me, but said it was all in my head and was stress related. He gave me a stress test which he said I passed well, as got pulse up to age maximum and blood pressure did what it was supposed to. My blood pressure was still typically quite high around 140/ 87, but after a summer of exercise it tended to be 130/ 84 when relaxing. My heart rate was around 62. The cardiologist said I had no need for further tests and was fine - he even said the blood pressure was good! I am 47.
Things continued, some days okay others bad, but in early 2013 I had to take time off work sick. I felt dizzy and breathless a lot. My GP said it was anxiety. Things stayed the same, so I saw another GP, she put me on propananol and sent me for an x ray which was fine. I Insisted on an echo to make sure. I eventually had an echo which found out I had Aortic Regurgitation, which the consultant said was mild to moderate, but nothing to worry about. I was! But my mind was on my wife, who died a few weeks later. The weeks following this were hard and I felt tired all the time. I had a follow up with a cardiologist who sent me for two stress tests, blood tests and a brain scan. All were okay and I did 14.5 mins on the bruce scale. The echo however showed that I had in the words of the cardiologist 'demonstrable' AR and 'probably' a bucuspid valve (previously he said I didn't!). He told me the AR was closer to mild than moderate and that it was not significant. He said my symptoms were more due to the retardant effect of the beta blocker and I should slowly come off this.
In the year that has followed I have slowly cut back on the beta blocker, I take just 5mg in the morning and another in the early evening. I still feel tired a lot, my thighs ache and I get periodic bouts of dizziness - still haven't got my energy levels back. My blood pressure has tended to vary and after a recent visit to the GP it was about 135/91 so I asked for BP meds. I have started taking Ramipril 2.5. Since taking this over the past 3 weeks I have all sorts of side effects. At first I felt good, then I couldn't sleep and got brain fog and now I have aching legs and some angina. MY BP is low first thing 114/ 74 but by mid afternoon is around 128/89. I feel tired a lot.
I can't help thinking this is all down to the BAV and the aortic regurgitation. I had to ask my GP for my last echo results as the cardiologist didn't seem to0 interested. This also showed I have a mildy dilated aortic root.
My measurements are:
Aortic root - 38mm
Sinotubular junction - 30mm
Ascending aorta - 35mm
My left ventricle diameter is 54mm (so enlarged?)
Wall thickness is 9mm and so is ivd
Wasn't given ejection fraction but the echo says there is normal systolic function
It says the AR is 'at least mild', but gives no measurements. There is only trace regurgitation from the other valves.
My heart rate tends to be quite low, 48 when fully on propananol, but typically anywhere from 54 to around 60. It does go up when I go for a walk and have just had an hour round th epart it was 74 when relaxing afterwards.
Sorry for the long note. Thiswas all the sort of thing I used to confide with my wife about, so I am a bit lost. I feel like my heart is doubly broken. I have read lots of research papers and testimonials and all this seems to suggest I am early days in my journey with BAV, but the size of my ventricle (though the cardiologist said it wa snot enlarged), my aortic root and my AR all worry me. I still have symptoms and feel tired, dizzy and ache, but everything I have read suggests I should not have symptoms. I will be having my annual follow up in two months time and I am getting ready. I try to walk every day if I can for 30-60 mins, and I cycle a little bit. I also try to do press-up, sit-up and some light weights in the morning.
Is it common to get symptoms even at an early stage of BAV disease? How have people experienced this? I know it is hard to tell how long before I need my intervention, but the fact I have symptoms worry me.
Any comments or further stories, gratefully received.
First off, just like to what a great resource this site is and how helpful I have found reading all your stories and messages of support.
Thought it was time to share my story. I found out I had a BAV earlier this year after a few torrid years. In Sept 2011 my wife and partner of 16 years found out she had terminal breast cancer. I pretty much spent as much time as I could caring for her. As her condition got worse I increasingly felt the stress. In May 2012 after doing some exercise I felt a sharp stab in my chest/ heart. I took an aspirin and went to bed. The next day and for weeks after I felt dizzy, had high blood pressure (160/98) and had chest pain so went to emergency. Blood tests showed I'd not had a heart attack, but I was referred to a cardiologist. He spent time to talking with me, but said it was all in my head and was stress related. He gave me a stress test which he said I passed well, as got pulse up to age maximum and blood pressure did what it was supposed to. My blood pressure was still typically quite high around 140/ 87, but after a summer of exercise it tended to be 130/ 84 when relaxing. My heart rate was around 62. The cardiologist said I had no need for further tests and was fine - he even said the blood pressure was good! I am 47.
Things continued, some days okay others bad, but in early 2013 I had to take time off work sick. I felt dizzy and breathless a lot. My GP said it was anxiety. Things stayed the same, so I saw another GP, she put me on propananol and sent me for an x ray which was fine. I Insisted on an echo to make sure. I eventually had an echo which found out I had Aortic Regurgitation, which the consultant said was mild to moderate, but nothing to worry about. I was! But my mind was on my wife, who died a few weeks later. The weeks following this were hard and I felt tired all the time. I had a follow up with a cardiologist who sent me for two stress tests, blood tests and a brain scan. All were okay and I did 14.5 mins on the bruce scale. The echo however showed that I had in the words of the cardiologist 'demonstrable' AR and 'probably' a bucuspid valve (previously he said I didn't!). He told me the AR was closer to mild than moderate and that it was not significant. He said my symptoms were more due to the retardant effect of the beta blocker and I should slowly come off this.
In the year that has followed I have slowly cut back on the beta blocker, I take just 5mg in the morning and another in the early evening. I still feel tired a lot, my thighs ache and I get periodic bouts of dizziness - still haven't got my energy levels back. My blood pressure has tended to vary and after a recent visit to the GP it was about 135/91 so I asked for BP meds. I have started taking Ramipril 2.5. Since taking this over the past 3 weeks I have all sorts of side effects. At first I felt good, then I couldn't sleep and got brain fog and now I have aching legs and some angina. MY BP is low first thing 114/ 74 but by mid afternoon is around 128/89. I feel tired a lot.
I can't help thinking this is all down to the BAV and the aortic regurgitation. I had to ask my GP for my last echo results as the cardiologist didn't seem to0 interested. This also showed I have a mildy dilated aortic root.
My measurements are:
Aortic root - 38mm
Sinotubular junction - 30mm
Ascending aorta - 35mm
My left ventricle diameter is 54mm (so enlarged?)
Wall thickness is 9mm and so is ivd
Wasn't given ejection fraction but the echo says there is normal systolic function
It says the AR is 'at least mild', but gives no measurements. There is only trace regurgitation from the other valves.
My heart rate tends to be quite low, 48 when fully on propananol, but typically anywhere from 54 to around 60. It does go up when I go for a walk and have just had an hour round th epart it was 74 when relaxing afterwards.
Sorry for the long note. Thiswas all the sort of thing I used to confide with my wife about, so I am a bit lost. I feel like my heart is doubly broken. I have read lots of research papers and testimonials and all this seems to suggest I am early days in my journey with BAV, but the size of my ventricle (though the cardiologist said it wa snot enlarged), my aortic root and my AR all worry me. I still have symptoms and feel tired, dizzy and ache, but everything I have read suggests I should not have symptoms. I will be having my annual follow up in two months time and I am getting ready. I try to walk every day if I can for 30-60 mins, and I cycle a little bit. I also try to do press-up, sit-up and some light weights in the morning.
Is it common to get symptoms even at an early stage of BAV disease? How have people experienced this? I know it is hard to tell how long before I need my intervention, but the fact I have symptoms worry me.
Any comments or further stories, gratefully received.
