Aa
29 yr old with Heart Valve Disease
Hello doctors =)
I am a 29 year old woman, I eat healthy and otherwise take care of myself. Last year a doctor discoverd a murmor while i was in for for a strep test (my daughters had strep and i knew i had gotten it to) so I was referred to a cardiologist. After an EKG, echo, and stress test I was diagnosed with Mitral Valve Regurgitation, Tricuspid Valve Regurgitation and Aortic Valve Regurgitation... I then had a CT scan which shows Aortic dilation right above the root. I recently went back for my yearly check up and only mitral valve has changed a bit, it is not mild to moderate regurgitation and before it was trace to mild. I have been having alot of chest pain so i have a 64 slice CT scan with contrast that is going to be scheduled tomorrow. The doctors believe I have some sort of connective tissue disease.
After all the background my questions. I am a single mother of two and I want to know if there is something i should be doing to help my heart from deteriorating more. I am worried that i may have passed it on to them, but i know i will need to contact a geneticist in that regard. Do these kinds of conditions always end in surgery? My doctor said for now he is more concerned with my aorta than my valves. Part of me hopes its my aorta so i can get the surgery done with now while im young and i believe i can bounce back from it. But will i need surgery? When it comes to valves and aortic dilation.... is not a matter of if but more a matter of when i will need the surgery?
Also, can I have another child? I had pre-eclampsia with both my children, the second one progressed into HELP and i was in the hospital for few days after with platelets dropping. I dont think its tied to my heart condition but im worried that if it is that means i cant have more.
Sorry it being so long =)
I am a 29 year old woman, I eat healthy and otherwise take care of myself. Last year a doctor discoverd a murmor while i was in for for a strep test (my daughters had strep and i knew i had gotten it to) so I was referred to a cardiologist. After an EKG, echo, and stress test I was diagnosed with Mitral Valve Regurgitation, Tricuspid Valve Regurgitation and Aortic Valve Regurgitation... I then had a CT scan which shows Aortic dilation right above the root. I recently went back for my yearly check up and only mitral valve has changed a bit, it is not mild to moderate regurgitation and before it was trace to mild. I have been having alot of chest pain so i have a 64 slice CT scan with contrast that is going to be scheduled tomorrow. The doctors believe I have some sort of connective tissue disease.
After all the background my questions. I am a single mother of two and I want to know if there is something i should be doing to help my heart from deteriorating more. I am worried that i may have passed it on to them, but i know i will need to contact a geneticist in that regard. Do these kinds of conditions always end in surgery? My doctor said for now he is more concerned with my aorta than my valves. Part of me hopes its my aorta so i can get the surgery done with now while im young and i believe i can bounce back from it. But will i need surgery? When it comes to valves and aortic dilation.... is not a matter of if but more a matter of when i will need the surgery?
Also, can I have another child? I had pre-eclampsia with both my children, the second one progressed into HELP and i was in the hospital for few days after with platelets dropping. I dont think its tied to my heart condition but im worried that if it is that means i cant have more.
Sorry it being so long =)
MEDICAL PROFESSIONAL
1. About 50% of patients with abnormal valves go on to have surgery. You are right in saying that with the aorta it is more a matter of when, not if. Although, careful follow up with yearly evaluations is necessary in both conditions.
2. whether or not you can have a child depends on the size of the aorta. If more than 4 cm I would not recommend it before corrective surgery. Also, even though preeclampsia is unrelated to the heart, the fact that your blood pressure goes up during that condition, it puts you at an incerased risk for aortic rupture.
2. whether or not you can have a child depends on the size of the aorta. If more than 4 cm I would not recommend it before corrective surgery. Also, even though preeclampsia is unrelated to the heart, the fact that your blood pressure goes up during that condition, it puts you at an incerased risk for aortic rupture.
Well, let me know what your measurements are when you find out.
You certainly sound like you have a ct disease. The important thing, in my layman's opinion, is not getting a particular diagnosis, but instead it is watching the entire aorta carefully for any growths. The diagnosis usually won't tell you much- yeah, you have Marfan or Ehlers Danlos, so what? The clinical significance is the same - watching the aorta. (The only diagnosis that might make a difference is Loeys Dietz, which can affect blood vessels throughout the body.)
ARBs (e.g., telmisartan) and ACEis (e.g., perindopril) have been shown to halt and reverse aortic root dilatation. I know of countless people - myself, friends, subject in studies, my cardiologist's patients, etc. - who have benefited from these findings. The key is to take a maximal or greater-than-maximal dose. Not all ARBs and ACEis appear to work. The ones I mentioned above seem to be the best candidates.
I'm not entirely clear on whether these drugs work for areas of the aorta beyond the root. The root is lined with special material that is sensitive to the TGF-b blocking powers of these drugs. The rest of the aorta may or may not be. I guess we can cross that bridge once we find out what "at the level of the pulmonary artery" means, since the PA sort of runs alongside the aorta for a good ways. I'd ask the doc to show you on a diagram what he means exactly.
In Christ's name.
NP
You certainly sound like you have a ct disease. The important thing, in my layman's opinion, is not getting a particular diagnosis, but instead it is watching the entire aorta carefully for any growths. The diagnosis usually won't tell you much- yeah, you have Marfan or Ehlers Danlos, so what? The clinical significance is the same - watching the aorta. (The only diagnosis that might make a difference is Loeys Dietz, which can affect blood vessels throughout the body.)
ARBs (e.g., telmisartan) and ACEis (e.g., perindopril) have been shown to halt and reverse aortic root dilatation. I know of countless people - myself, friends, subject in studies, my cardiologist's patients, etc. - who have benefited from these findings. The key is to take a maximal or greater-than-maximal dose. Not all ARBs and ACEis appear to work. The ones I mentioned above seem to be the best candidates.
I'm not entirely clear on whether these drugs work for areas of the aorta beyond the root. The root is lined with special material that is sensitive to the TGF-b blocking powers of these drugs. The rest of the aorta may or may not be. I guess we can cross that bridge once we find out what "at the level of the pulmonary artery" means, since the PA sort of runs alongside the aorta for a good ways. I'd ask the doc to show you on a diagram what he means exactly.
In Christ's name.
NP
From what I know from the last scan the dilation is at the level of the pulmonary artery. I am unsure of the measurement... I will be sure to get this when I get results of this most recent scan... I am set to meet with my doctor tomorrow provided the scans are good enough to diagnose. I am 5'8" and 105 lbs.
I will look into the posts on your screen name. I havent looked into much of the research as I wasnt really concerned about it until I started getting chest pain. I am unsure if the pain is related to the aorta or something to do with my valves. I have never had heart burn so I assume that it isn't reflux, especially since I eat fairly healthy and the pain doesnt seem to have any relation to times I eat or items I eat.
As far as a list of of signs of connective tissue disease - these are what I have that i have seen linked to different diseases....
- tall & slender
- flexible
- long fingers/toes
- high mouth palette
- mitral valve regurgitation
- tricuspid valve regurgitation (i have read that if you have more than 1 valve with a abnormality typically a connective tissue disease is likely)
- aortic valve regurgitation
- aortic dilation
- velvety soft skin
- tiny wrists (mine are 5 inches around)
- cold hands
- nearsighted (since elementary)
I cant think of what else.... I had my eyes tested for detached retina and doc says they are fine.
I will look into the posts on your screen name. I havent looked into much of the research as I wasnt really concerned about it until I started getting chest pain. I am unsure if the pain is related to the aorta or something to do with my valves. I have never had heart burn so I assume that it isn't reflux, especially since I eat fairly healthy and the pain doesnt seem to have any relation to times I eat or items I eat.
As far as a list of of signs of connective tissue disease - these are what I have that i have seen linked to different diseases....
- tall & slender
- flexible
- long fingers/toes
- high mouth palette
- mitral valve regurgitation
- tricuspid valve regurgitation (i have read that if you have more than 1 valve with a abnormality typically a connective tissue disease is likely)
- aortic valve regurgitation
- aortic dilation
- velvety soft skin
- tiny wrists (mine are 5 inches around)
- cold hands
- nearsighted (since elementary)
I cant think of what else.... I had my eyes tested for detached retina and doc says they are fine.
Sorry to hear of your troubles! I don't know much about adverse reactions to iodine, so I can't really comment on that. Surely there are other materials available that can do the job, but that's a question for your doctor.
About your dilatation. When you say it's right "above the root," do you mean it's in the bulbous part of the root itself, or entirely above the root and well into the ascending aorta? What is the measurement? What is your height/weight?
I tell every single person with aortic dilatation the same thing: click on my screen name and read my old posts on this topic. Have you heard of the latest research in halting aneurysmal growth using ACE inhibitors and angiotensin receptor blockers (ARB)?
Finally, what signs do you have of connective tissue disease? A complete list would be good.
In Christ's name,
NP
About your dilatation. When you say it's right "above the root," do you mean it's in the bulbous part of the root itself, or entirely above the root and well into the ascending aorta? What is the measurement? What is your height/weight?
I tell every single person with aortic dilatation the same thing: click on my screen name and read my old posts on this topic. Have you heard of the latest research in halting aneurysmal growth using ACE inhibitors and angiotensin receptor blockers (ARB)?
Finally, what signs do you have of connective tissue disease? A complete list would be good.
In Christ's name,
NP
Well i had my CT scan today. They were able to squeeze me in. It was the most uncomfortable procedure ever. The woman hooked me up to a monitor and tried to get me to relax so my heart rate would lower and steady but it stayed jumping around between the 70s and 100. It would not stay constant on or near the same number... she found it odd. Then after a few minutes they decided to start the CT scan. The second the iodine went in my heart raced as high as i have ever felt it and it was a horrible feeling. I had a hard time holding my breath. After the scan she rushed in and said my heart rate went up way to high and that it might not be a good scan and that i might then have to redo it. The radiologist is supposed to look at it tomorrow and decide if i need to do it again. Honestly, I don't want to do it again - it freaked me out. She said they could use beta-blockers to try to keep my heart rate down but I'm worried i will crash or something... and with my cardiologist not there... its scary. Is that a normal reaction? She said iodine does raise the heart rate but she made it seem like mine went much higher than normal or than it should rather. I am scared to do it again.
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