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Old 11-19-2004, 05:00 PM   #1
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Adults With Congenital Defects

If you were born with a heart defect and are now an adult, please share your experience. Was the defect corrected and if so how? Do you have symptoms still and if so what and how frequently? I know I can't be the only person out there with an atrial septal defect that didn't close like they thought it eventually would. I have PACs and occassional dizziness when standing up too quickly or bending over after suddenly stopping streneous exercise, & certain things like too much caffiene, some OTC cold & allergy meds, and the artificial sweetener aspartame (sp?) cause a racing pulse and increase of other symptoms, but other than that I'm pretty much "normal." I've been given the option to have the hole closed surgically, but at this point it doesn't appear to be medically necessary to do so, because the risks of surgery far outweigh the risks of just leaving things as they are, in my case anyway.
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Old 01-27-2005, 07:44 AM   #2
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Re: Adults With Congenital Defects

Kitten, I also have a congenital condition called Epsteins Anomaly. It is a mild version of this condition so I consider myself lucky. I have not had surgery and am now 52. The condition causes a leaky tri-cuspid valve and periods of irregular heartbeats with some atrial fibrillation. This is tolerated by taking topral50mg. and cardiaxl120mg. daily. Otherwise I try to live a normal active life. My biggest concerns are up and down energy levels and a feeling of being unwell during the periods of irregular beats.Any other other people out there with this rare condition???

 
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Old 01-27-2005, 08:09 AM   #3
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Re: Adults With Congenital Defects

Debrae, you're the first person that's responded at all since I first started posting here months ago. I'm wondering is the reason there are so few adults living with congenital defects is because the increase in surgical knowledge allows most to be "fixed" at birth or shortly after nowdays? I know they've come a long way in that regards.
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Old 01-28-2005, 05:13 PM   #4
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Re: Adults With Congenital Defects

I have a condition which I just found out about a couple of months ago, Aortic Stenosis .. I'm finding out on Feb 14th what is going to be done about it, I also have shortness of breathe (constant) some dizziness and have some chest pain but not as much as I did a couple of months ago, rapid heart rate every so often makes me crazy because I just can't stay still when it happens

Last edited by leeanne172; 01-28-2005 at 05:14 PM.

 
Old 01-31-2005, 01:08 AM   #5
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Re: Adults With Congenital Defects

Tbomp & I both made an error in judgement and I respectfully apologize...

That being said, maybe we can get this thread back on a productive track for others now
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Old 01-31-2005, 06:48 AM   #6
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Re: Adults With Congenital Defects

LeeAnn, if I may ask, how old are you? The reason I ask is my son has just been found to have aortic insuffiency but not stenosis. He is 13 yrs. old and was checked at birth and told he had no defects. Now they say this is from birth. Just curious how old you are if you just found out you had this problem. Best of luck to you.

Debbie

 
Old 01-31-2005, 06:52 AM   #7
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Re: Adults With Congenital Defects

LeeAnne, if you don't mind my asking, how old are you? The reason I am asking is my son has just been told he has aortic insuffiency, not stenosis. He is 13 yrs. old. He was checked at birth and told he had no defects, but now they say this is from birth. Just curious how old you were when you found out about this condition. Best of luck to you.

Debbie

 
Old 02-02-2005, 08:24 PM   #8
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Re: Adults With Congenital Defects

Kitten,
Hi, I was diagnosed two years ago with a coarctation of the aorta at the age of 22. I had high blood pressure every time I went to the doctor or when I had a physical (sports related). It was dismissed by all doctors after I had countless EKG's, ultrasounds, and check-up's that showed nothing. My blood pressure was running as high as 190/80 , but normally was around 160/80. Finally, I had a doctor that reccomended that I have a MRI. The MRI was the only test that picked up on my condition. Once the coarctation was found I had open heart surgery to correct the defect. I am currently taking labetalol and diovan. My blood pressure is now under control running usually at 130/80. I have to monitor my BP closely and I try to lead a much healthier lifestyle. Pretty scary at the time, but i am so thankful that the condition was found and corrected. Without the surgery I would have been in really bad shape down the road.

 
Old 02-13-2005, 05:16 PM   #9
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Re: Adults With Congenital Defects

I am a 22 year old woman. I was born with A congenital Heart Defect. I had pulmonary Stenosis and ASD.
When I was 2 years old I had open heart surgury to widen the valve, in doing this it caused the valve to leak so the Drs decided to leave the hole open to compensate for the extra blood flow.
I was told that by the age of 16 I would need to have the pulmonary valve replaced. This didn't happen untill I was 20 years old.
I had a pulmonary Homograft and had the hole stiched up. I am now doing better then I ever had, and can now have a child. I will need to have this valve repalced again in about 15 years time. It is rare to find someone in my age bracket with a CHD, it is either babies or older people that have heart probs. I was the youngest patient in the adult ward in the hospital at the time of my surgery... the nurse actually came looking for an older woman when i was booked into hospital and asked if i was with my gran who was having the opperation.. thats how rare it seems to be for someone my age to have a problem like this.
If you have valve surgury the is a great website called{removed}



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Old 02-17-2005, 07:19 AM   #10
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Re: Adults With Congenital Defects

I am 26 yrs old and I have an ASD...it is the PFO (Patent Foreman Ovale) with aneurysm of the septum. They do not want to close it at this time. I guess they just wait to see if you ever have any problems first before considering you for surgery. I take 81 mg of aspirin daily to keep my blood thin.

I wanted to start on birth control pills... because I do not want anymore kids and I am concerned whether it is a good idea... My cardiologist says no, my gyno. doctor says I should be fine. That the pills nowadays are low dose and if I am taking aspirin daily it should be fine.

WHAT DO YOU THINK??

IS THERE ANYBODY ON HERE THAT HAS A HEART DEFECT BUT STILL TAKES BIRTH CONTROL PILLS?????

I would love to hear some of your advice.
Thanks

 
Old 06-19-2006, 04:21 PM   #11
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Wink Re: Adults With Congenital Defects

answer to Debrae
I also have epsteins anomoly. I am now 72 years of age. I lead a normal life, however exertion has now become somewhat more difficult. I have worn a pacemaker for the last 13 years because of a a/v block. I have recently been diagnosed with atrial fibrillation. I feel the same as yourself, When the heatbeat races I feel very tired and lightheaded. I am going in for a stress test in a couple of days to see if I have developed angina. I also have pulmonary hypertension. Until a couple of years ago I felt that I had more energy than most people, but now I am trying to go to bed earlier, and not push myself . If I am tired I lie down. I guess I have been lucky all these years. I live in Toronto where we have a terrific congenital heart clinic.

 
Old 06-25-2006, 08:54 AM   #12
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I thought I would add my experience to this thread

I am 34 and was diagnosed this past April with Cor Triatriatum (extra chamber in my left atrium) I was diagnosed two years prior with SVT. Turns out it was the defect causing my problems ie rapid heartrate,dizziness,shortness of breath etc. My previous echo looked ok until the one in April and it showed a 'mass' in my left atrium. I then went for a TEE and the mass was determined to be an extra chamber. It is a very rare conditon(especially in an adult since 75% of babies will die within the first year of life w/out repair) luckily Dr. Cooley, who is a world reknown surgeon, had done some of these repairs and was willing to see me the next day after I called his office. He wanted to do my surgery asap. He explained doing it before an emergency situation would be much better and my only option was surgery to resection. My left atrium was dilated and my pulmonary pressures were increased along with some other findings. The only reason I had made it thus far was because I had 'communication' between the chambers. Without surgery I would surely go into congestive heart failure eventually. So I had open-heart surgery April 5th,two days after meeting with Dr.Cooley, and am still recovering but other than the sternal pain I feel fine. No more shortness of breath or dizziness. I haven't had a single episode of increased heartrate either. I am still taking Toprol as atrial fibrillation is common after open-heart so it's a 'safeguard' treatment but I will wean off of it soon. I hope everyone finds the answers they are looking for and has good heart health.
CJ

 
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