D
deogloria
Hi,
I'm new. I've known about my aortic valve with stenosis and reguritation for four years (was told then that I'd need a replacement in five years). Found out that the valve was a bicuspid last year. Went to ER with radiating left arm pain last year, was given EKG and blood tests and blown off (sound familiar?).
After having mild chest pain several times over the last year, I saw a doctor at a same-day clinic two weeks ago. The old jerk condescendingly told me that, in spite of my symptoms, my bad heart valve, and a family history of aortic aneurysm, I was "too young for anything like that" and that "it's just stress, my dear". Of course, I never told him anything about my life that would make it sound stressful...he didn't even know I had five kids.
After some recent research into dissections, I knew enough to ignore him. That night I went to a larger hospital and was taken somewhat seriously, until they saw me joking around. (I TOLD them that I'm the type of person who can be in a LOT of pain, crying, and still joke around...although this pain was mild.) Suddenly they just wanted to get the last blood test in and dismiss me. The nurse (I never saw a doctor) told me it was probably stress, and I needed to stop scaring myself by doing internet research. (Yes, go home you silly housewife, and pop a Xanax like everyone else. You'll be fine.) I insisted on a CT scan with contrast.
Guess what they found folks? Yep, a big old aneurysm, right on the ascending aorta where I told them it would be. 4.5 cm. Must have been a lucky guess, huh? And the stupid nurse STILL thought the chest pain was stress. I guess the giant aneurysm and bad heart valve were just a coincidence. The next person to tell me my chest pain is "just stress" is going to get smacked!
The ER nurse referred me to a cardiologist and sent me home. I had an appointment for two weeks later, but was called (on a Sunday) and asked if I could come in the next day. Saw the cardiologist and had another echo done, and was referred to the specialist for valve and aortic disease. I get an MRA and see him in two weeks. I haven't heard any results from the echo, and no one has explained the chest pain. After researching, I think it is my stenosis, that it has gotten worse. I have bad shortness of breath, and the chest pain happens mostly with activity. I'm worried I'm going into heart failure, based on my symptoms.
To complicate matters, I just found out I'm pregnant. The worst part is that I had the CT scan, two chest x-rays, and two wrist x-rays the same weekend, while I was pregnant (unknowingly....and the wrist x-ray was from an earlier unrelated injury). So now I'm worried about the baby, and about myself. I know the dangers of being pregnant with my condition.
I don't know if the cardiologist is going to want to do surgery anyway, or wait. I'm afraid to wait, I've heard the stories of people who dissected at less than 5 cm, and who knows how much it could grow while I'm pregnant? But I'm also afraid to get surgery, because I'd hate for anything to happen to the baby. If I have to get surgery, I will, as long as the baby still has a chance to survive.
Has anyone else become pregnant with severe stenosis or a large aneurysm? Has anyone had surgery while pregnant? Does anyone have any survival rate statistics for people who have AVR and/or aneurysm repair, in their thirties or forties? Most statistics include a whole lot of old people. I don't know what the long term survival rate is for people like me.
Thanks!
I'm new. I've known about my aortic valve with stenosis and reguritation for four years (was told then that I'd need a replacement in five years). Found out that the valve was a bicuspid last year. Went to ER with radiating left arm pain last year, was given EKG and blood tests and blown off (sound familiar?).
After having mild chest pain several times over the last year, I saw a doctor at a same-day clinic two weeks ago. The old jerk condescendingly told me that, in spite of my symptoms, my bad heart valve, and a family history of aortic aneurysm, I was "too young for anything like that" and that "it's just stress, my dear".
Of course, I never told him anything about my life that would make it sound stressful...he didn't even know I had five kids. After some recent research into dissections, I knew enough to ignore him. That night I went to a larger hospital and was taken somewhat seriously, until they saw me joking around. (I TOLD them that I'm the type of person who can be in a LOT of pain, crying, and still joke around...although this pain was mild.) Suddenly they just wanted to get the last blood test in and dismiss me. The nurse (I never saw a doctor) told me it was probably stress, and I needed to stop scaring myself by doing internet research. (Yes, go home you silly housewife, and pop a Xanax like everyone else. You'll be fine.) I insisted on a CT scan with contrast.
Guess what they found folks?
Yep, a big old aneurysm, right on the ascending aorta where I told them it would be. 4.5 cm. Must have been a lucky guess, huh? And the stupid nurse STILL thought the chest pain was stress. I guess the giant aneurysm and bad heart valve were just a coincidence. The next person to tell me my chest pain is "just stress" is going to get smacked! The ER nurse referred me to a cardiologist and sent me home. I had an appointment for two weeks later, but was called (on a Sunday) and asked if I could come in the next day. Saw the cardiologist and had another echo done, and was referred to the specialist for valve and aortic disease. I get an MRA and see him in two weeks. I haven't heard any results from the echo, and no one has explained the chest pain. After researching, I think it is my stenosis, that it has gotten worse. I have bad shortness of breath, and the chest pain happens mostly with activity. I'm worried I'm going into heart failure, based on my symptoms.
To complicate matters, I just found out I'm pregnant.
The worst part is that I had the CT scan, two chest x-rays, and two wrist x-rays the same weekend, while I was pregnant (unknowingly....and the wrist x-ray was from an earlier unrelated injury). So now I'm worried about the baby, and about myself. I know the dangers of being pregnant with my condition. I don't know if the cardiologist is going to want to do surgery anyway, or wait. I'm afraid to wait, I've heard the stories of people who dissected at less than 5 cm, and who knows how much it could grow while I'm pregnant? But I'm also afraid to get surgery, because I'd hate for anything to happen to the baby. If I have to get surgery, I will, as long as the baby still has a chance to survive.
Has anyone else become pregnant with severe stenosis or a large aneurysm? Has anyone had surgery while pregnant? Does anyone have any survival rate statistics for people who have AVR and/or aneurysm repair, in their thirties or forties? Most statistics include a whole lot of old people. I don't know what the long term survival rate is for people like me.
Thanks!
