It has been a LONG few weeks. I was born with a CoA, Bicuspid Aortic Valve, and VSD, though I didn't know about the BAV until I was 24. I had surgery to repair the CoA in 1977 (I was 6). After surgery, I was told that my heart was permanently fixed...and probably would never face problems again. Due to a lack of technology....I never had my first echo until I was ready to consider pregnancy for the first time. (@1996) I Saw the cardiologist after a long time of avoiding him...just to make sure it was OK to get pregnant. Before the visit.....I did my own research...and discovered that 50% of patients with CoA also had BAV. So......I thought I'd ask if I had a BAV. Unfortunately.....I did....and she wondered why I didn't know. She told me that what that really meant was that I would probably need to replace that valve when I was in my 70's. So I put it in the back of my mind...never to worry again....and kept my yearly cardio appts.....most of the time......
A few weeks ago I started this weird cough.....my mom panicked when she heard it and said it was a "heart cough". So I HAD to look it up! (here I go again). In the course of my searching.....I discovered the truth about BAV....and learned that it was REALLY important for adults with congenital heart defects to go to specialized clinics specifically for adults with congenital heart defects........in fear and shock....I scheduled an appointment for one week later......I thought this doctor would set my mind at ease...and tell me to STOP searching the internet.....because it was driving me crazy.......WELL........instead he confirmed all my research and suspicions. NOW....I am waiting to schedule a date with the MRI machine so we can measure my aorta...and detect any signs of CAD. All of this has been overwhelming and stressful.
I am a 40 year old woman 5'1" 159lb. I have BAV....and now I've learned that I also have trivial regurgitation. I am ALWAYS tired....and exercise and I do NOT get along. (especially cardio). (I cannot catch my breath) I get a little winded when I walk up steps...and do other simple things. I've always thought that my age, weight.....and fact that I do NOT exercise.....were the cause. Sometimes I wake in the night with a crushing feeling in my chest....and frequently feel quick bursts of chest pain, neck and jaw pain and arm pain. ( I always blame it on indigestion.) Once when monitored in the hospital, I discovered I had bradycardia......my heartbeat would drop in the 30's and below at night. My blood pressure has been great.....but my last 2 visits it was a little higher than normal. (128/68) Once when I had a chest x ray.....I was asked if I had previous aorta surgery because my aorta was a little larger than expected. The symptom that kick started the whole thing was a weird thing. I would be resting.....and as I breathed....it almost got caught.....and I couldn't get air until I coughed. I wish I could explain it better.....but I don't feel it is related to anything respiratory. That symptom is increasing through these few weeks......and leaving me with a "heavy chest" feeling. (Maybe it's anxiety????)
So....I am in a waiting game......I've had an echo....which detected the regurgitation.....and I'm still waiting to schedule the MRI.....I'm wondering if the doctor will recommend surgery.....or not. My doctor has been pretty silent over the last week and 1/2. The clinic uses a team approach....so I'm wondering if he is consulting his team of surgeons....pediatric specialists...and adult specialists to decide. Either way.....I have a feeling that surgery IS in my future....I just don't know if I should pack the sunscreen for the summer OR....pack the hospital bag.
I've diligently researched surgery criterion....until I've almost gone crazy.....and finally concluded that I can't figure it out.......so I'll just have to wait and see. I found this site in all my research and have been fascinated with your stories and experiences.
Do any of my symptoms sound familiar to any of you? Is surgery time mainly based on the size of the aorta? What is life like after surgery? What are the downsides to blood thinners? Will I be just as tired? How soon after surgery can I return to work (as a teacher)? What advice would you have for someone who is in that crazy waiting period?
I get a feeling that 15-20 years ago when they were diagnosing BAV.....the connective tissue/aorta weakness was not known....and doctors mainly took a wait and see approach to surgery......but now as research is revealing the dangerous nature of aneurysms and dissections ......doctors are taking a more aggressive and prophylactic approach to surgery. This makes me think my age....short stature....BAV diagnosis....symptoms..... and slight regurgitation may all send me on a "fast pass" to the OR. This is a ride that I would like to avoid......but probably won't.
Thanks for listening....Any words would be appreciated!
A few weeks ago I started this weird cough.....my mom panicked when she heard it and said it was a "heart cough". So I HAD to look it up! (here I go again). In the course of my searching.....I discovered the truth about BAV....and learned that it was REALLY important for adults with congenital heart defects to go to specialized clinics specifically for adults with congenital heart defects........in fear and shock....I scheduled an appointment for one week later......I thought this doctor would set my mind at ease...and tell me to STOP searching the internet.....because it was driving me crazy.......WELL........instead he confirmed all my research and suspicions. NOW....I am waiting to schedule a date with the MRI machine so we can measure my aorta...and detect any signs of CAD. All of this has been overwhelming and stressful.
I am a 40 year old woman 5'1" 159lb. I have BAV....and now I've learned that I also have trivial regurgitation. I am ALWAYS tired....and exercise and I do NOT get along. (especially cardio). (I cannot catch my breath) I get a little winded when I walk up steps...and do other simple things. I've always thought that my age, weight.....and fact that I do NOT exercise.....were the cause. Sometimes I wake in the night with a crushing feeling in my chest....and frequently feel quick bursts of chest pain, neck and jaw pain and arm pain. ( I always blame it on indigestion.) Once when monitored in the hospital, I discovered I had bradycardia......my heartbeat would drop in the 30's and below at night. My blood pressure has been great.....but my last 2 visits it was a little higher than normal. (128/68) Once when I had a chest x ray.....I was asked if I had previous aorta surgery because my aorta was a little larger than expected. The symptom that kick started the whole thing was a weird thing. I would be resting.....and as I breathed....it almost got caught.....and I couldn't get air until I coughed. I wish I could explain it better.....but I don't feel it is related to anything respiratory. That symptom is increasing through these few weeks......and leaving me with a "heavy chest" feeling. (Maybe it's anxiety????)
So....I am in a waiting game......I've had an echo....which detected the regurgitation.....and I'm still waiting to schedule the MRI.....I'm wondering if the doctor will recommend surgery.....or not. My doctor has been pretty silent over the last week and 1/2. The clinic uses a team approach....so I'm wondering if he is consulting his team of surgeons....pediatric specialists...and adult specialists to decide. Either way.....I have a feeling that surgery IS in my future....I just don't know if I should pack the sunscreen for the summer OR....pack the hospital bag.
I've diligently researched surgery criterion....until I've almost gone crazy.....and finally concluded that I can't figure it out.......so I'll just have to wait and see. I found this site in all my research and have been fascinated with your stories and experiences.
Do any of my symptoms sound familiar to any of you? Is surgery time mainly based on the size of the aorta? What is life like after surgery? What are the downsides to blood thinners? Will I be just as tired? How soon after surgery can I return to work (as a teacher)? What advice would you have for someone who is in that crazy waiting period?
I get a feeling that 15-20 years ago when they were diagnosing BAV.....the connective tissue/aorta weakness was not known....and doctors mainly took a wait and see approach to surgery......but now as research is revealing the dangerous nature of aneurysms and dissections ......doctors are taking a more aggressive and prophylactic approach to surgery. This makes me think my age....short stature....BAV diagnosis....symptoms..... and slight regurgitation may all send me on a "fast pass" to the OR. This is a ride that I would like to avoid......but probably won't.
Thanks for listening....Any words would be appreciated!