G
Guest
I have mixed feelings about finding this website. Blessed that there is a place where I can speak to people who understand and can offer valid advice about the things I am going through – yet dumbfounded that what I thought I knew about BAV/AS barely touches the surface!
My journey: I was diagnosed at 4 with AS – apparently I would just turn blue and pass out. My parents were told that I would never have children, never be able to exercise and my life would be seriously limited. At 13, I changed cardiologists and was told that I had been misdiagnosed and that I really had Mitral Valve Prolapse. A normal life was in my reach! At 20, I was told that I no longer needed to be routinely followed – just come back when I got pregnant or had problems. 2 kids and 13 years later, I started having problems with ‘high’ blood pressure. The numbers were actually in the borderline range – the problem was that I was so sensitive to the range. At 130/85, I could feel the symptoms of high blood pressure. My family doctor put me on Benazipril HCTZ and I made the appointment with a new cardiologist. This time I was told that the criteria for MVP had changed and that I no longer met the criteria. Stunned, confused and a bit relieved – I went on my way. In 2005 and at 33, I was heart disease free!
In 2011, I started experiencing heart rate problems, shortness of breath, chest pain and swelling in my hands and feet. And the palpitations I had had my entire life that were always ‘in my throat’ and never lasted long – changed to deep in the chest and were slower, longer and more frequent. But heart disease free, I went on about my life – thinking it was due to being out of shape and overweight. Then two things happened. My cousin died of a heart attack at 45. And a month later, I took a road trip from Virginia to Minnesota. The swelling, palpitations and blood pressure problems I had while on that trip were the worst I had ever experienced. I decided it was time to see another cardiologist. After the echo, the nuclear stress test, the EP study and the Cardiac MRI – I was diagnosed with Aortic Stenosis, Bicuspid Valve and Left Bundle Branch Block. We added Metoprolol Succ ER to my meds and now we play the wait and see game. We’ve moved up my yearly check-up due to starting to experience problems again – but I feel fairly certain that I’m not ‘ready’ yet. (I am also Vit-D deficient, hypothyroid and Type 2 Diabetes and my current medications are 5000iu Vit D daily, Levythyroxin, Metformin, Benazapril HCTZ and Metoprolol Succ ER, Vit B stress complex)
My questions are about some oddities that I’ve experienced and about the type of doctor that everyone sees. I recently read that there are valvular specialists within the cardiology field. I hesitate changing doctors but I want to make sure I am being treated by the right type of doctor. Were you followed by a cardiologist or valvular specialist?
I also hear my pulse in my right ear. (pulsating tinnitus is my self diagnosis) Sometimes I can’t hear it – sometimes it’s just a little aggravating, sometimes I have to turn the TV up because it’s so loud! I tell myself it’s God’s way of preparing me for hearing the ticking of a mechanical valve – but it’s really frustrating. Did/Does anyone experience this?
I seem to be ‘oversensitive’ to blood pressure and heart rate. In other words, when my blood pressure hits the borderline range – I’m already experiencing signs of high blood pressure. When my resting heart rate increases to about 80 – I can feel it. (my resting heart rate is between 50 and 60) Does this go with the game?
Did/do you have a medical alert bracelet?
I’ve only ever tracked my velocity – but I see from other posts that I should be tracking other things. When I go to the doc at the end of the month, I’ll be sure to ask for my echo report? Is that right? I appreciate any feedback and look forward to being involved in this group.
My journey: I was diagnosed at 4 with AS – apparently I would just turn blue and pass out. My parents were told that I would never have children, never be able to exercise and my life would be seriously limited. At 13, I changed cardiologists and was told that I had been misdiagnosed and that I really had Mitral Valve Prolapse. A normal life was in my reach! At 20, I was told that I no longer needed to be routinely followed – just come back when I got pregnant or had problems. 2 kids and 13 years later, I started having problems with ‘high’ blood pressure. The numbers were actually in the borderline range – the problem was that I was so sensitive to the range. At 130/85, I could feel the symptoms of high blood pressure. My family doctor put me on Benazipril HCTZ and I made the appointment with a new cardiologist. This time I was told that the criteria for MVP had changed and that I no longer met the criteria. Stunned, confused and a bit relieved – I went on my way. In 2005 and at 33, I was heart disease free!
In 2011, I started experiencing heart rate problems, shortness of breath, chest pain and swelling in my hands and feet. And the palpitations I had had my entire life that were always ‘in my throat’ and never lasted long – changed to deep in the chest and were slower, longer and more frequent. But heart disease free, I went on about my life – thinking it was due to being out of shape and overweight. Then two things happened. My cousin died of a heart attack at 45. And a month later, I took a road trip from Virginia to Minnesota. The swelling, palpitations and blood pressure problems I had while on that trip were the worst I had ever experienced. I decided it was time to see another cardiologist. After the echo, the nuclear stress test, the EP study and the Cardiac MRI – I was diagnosed with Aortic Stenosis, Bicuspid Valve and Left Bundle Branch Block. We added Metoprolol Succ ER to my meds and now we play the wait and see game. We’ve moved up my yearly check-up due to starting to experience problems again – but I feel fairly certain that I’m not ‘ready’ yet. (I am also Vit-D deficient, hypothyroid and Type 2 Diabetes and my current medications are 5000iu Vit D daily, Levythyroxin, Metformin, Benazapril HCTZ and Metoprolol Succ ER, Vit B stress complex)
My questions are about some oddities that I’ve experienced and about the type of doctor that everyone sees. I recently read that there are valvular specialists within the cardiology field. I hesitate changing doctors but I want to make sure I am being treated by the right type of doctor. Were you followed by a cardiologist or valvular specialist?
I also hear my pulse in my right ear. (pulsating tinnitus is my self diagnosis) Sometimes I can’t hear it – sometimes it’s just a little aggravating, sometimes I have to turn the TV up because it’s so loud! I tell myself it’s God’s way of preparing me for hearing the ticking of a mechanical valve – but it’s really frustrating. Did/Does anyone experience this?
I seem to be ‘oversensitive’ to blood pressure and heart rate. In other words, when my blood pressure hits the borderline range – I’m already experiencing signs of high blood pressure. When my resting heart rate increases to about 80 – I can feel it. (my resting heart rate is between 50 and 60) Does this go with the game?
Did/do you have a medical alert bracelet?
I’ve only ever tracked my velocity – but I see from other posts that I should be tracking other things. When I go to the doc at the end of the month, I’ll be sure to ask for my echo report? Is that right? I appreciate any feedback and look forward to being involved in this group.
