J
JadeM
Hello,
I am a new member here and I had a few questions-- I'm not sure if anyone can help. I am 19 years old and have Congenital heart disease w/ repaired (ostium primum) ASD, mitral, tricuspid, and pulmonic regurgitation. I have also been recently diagnosed with mitral valve prolapse and hypertension. I had only mild symptoms since my repair until a year and a half ago when I had some minor symptoms. It has been progressing lately and my lips (and toenails) turn blue and I have problems especially when drinking liquid, bathing, eating, or being surprised/active. I get fatigued very easily and short of breath. I then went to the ER when my lips turned blue again and they told me to see a cardiologist because a congenital heart defect is causing the problem. I then went to a learning hospital which did not refer me to a cardiologist but did order an echo. No one read the results but me, as I asked to get the results sent in the mail. The place I was going to said they wouldn't see me for two months, regardless of the results, which showed a right-to-left shunt and recommended ordering a TEE. After a few weeks I was able to get them to do it and they said I had a PFO which was not causing symptoms. I then called them back to see if they might talk about the TTE results but they said I don't have a PFO or any other heart problems. I have had more than 15 echos and all of them have said I had what I mentioned above. They told me to go to a regular doctor. My tests still haven't been read (and everyone refuses to look at them) and I haven't been consulted or have seen a cardiologist. I am so frustrated because they are the only place I can find and I can't get on health insurance because of my condition. I have seen some changes myself on the echo and I do not know what it means. The last echo I had was done 5 months ago (it seems weird the numbers have changed so much in such a short amount of time, since they never have before). I am sorry for the ranting, by the way! My new echo shows this: mitral peak velocity 3.39m/sec (old peak velocity 1.1) doppler 2.76 cm2, right ventricle 2.3 (old 1.7) tricuspid rvsp 37 (old 33). I have tried going to another regular doctor and they told me they thought a heart defect was causing my symptoms by the ER and echo results and to go to a cardiologist. I told them my situation and they have been trying for several days to get them to make an appointment but they aren't having any luck. I just don't know what to do and I don't know what those numbers might indicate. Any suggestions would be greatly appreciated. Thank you for your help-- what a very nice site!
I am a new member here and I had a few questions-- I'm not sure if anyone can help. I am 19 years old and have Congenital heart disease w/ repaired (ostium primum) ASD, mitral, tricuspid, and pulmonic regurgitation. I have also been recently diagnosed with mitral valve prolapse and hypertension. I had only mild symptoms since my repair until a year and a half ago when I had some minor symptoms. It has been progressing lately and my lips (and toenails) turn blue and I have problems especially when drinking liquid, bathing, eating, or being surprised/active. I get fatigued very easily and short of breath. I then went to the ER when my lips turned blue again and they told me to see a cardiologist because a congenital heart defect is causing the problem. I then went to a learning hospital which did not refer me to a cardiologist but did order an echo. No one read the results but me, as I asked to get the results sent in the mail. The place I was going to said they wouldn't see me for two months, regardless of the results, which showed a right-to-left shunt and recommended ordering a TEE. After a few weeks I was able to get them to do it and they said I had a PFO which was not causing symptoms. I then called them back to see if they might talk about the TTE results but they said I don't have a PFO or any other heart problems. I have had more than 15 echos and all of them have said I had what I mentioned above. They told me to go to a regular doctor. My tests still haven't been read (and everyone refuses to look at them) and I haven't been consulted or have seen a cardiologist. I am so frustrated because they are the only place I can find and I can't get on health insurance because of my condition. I have seen some changes myself on the echo and I do not know what it means. The last echo I had was done 5 months ago (it seems weird the numbers have changed so much in such a short amount of time, since they never have before). I am sorry for the ranting, by the way! My new echo shows this: mitral peak velocity 3.39m/sec (old peak velocity 1.1) doppler 2.76 cm2, right ventricle 2.3 (old 1.7) tricuspid rvsp 37 (old 33). I have tried going to another regular doctor and they told me they thought a heart defect was causing my symptoms by the ER and echo results and to go to a cardiologist. I told them my situation and they have been trying for several days to get them to make an appointment but they aren't having any luck. I just don't know what to do and I don't know what those numbers might indicate. Any suggestions would be greatly appreciated. Thank you for your help-- what a very nice site!
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