Congenital Heart Disease Support Group

Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). CHD can describe a wide variety of different abnormalities affecting the heart. CHD occurs when the heart or blood vessels near the heart does not develop properly before birth.

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I have a PFO and I'm very scared!

deleted_user
deleted_user
I am a 37 yr. old woman- 135 lbs. and recently found through an echocardiogram done by a cardiologist that I was born with a heart defect. I have a PFO a hole the size of a pencil eraser. I've been struggling my whole life with chronic fatigue,weakness,muscle weakness,also have sinus tachycardia that was found by my family dr. after wearing a holter monitor. I've suffered with many symptoms and no one could explain what was wrong with me and why I tired so easily and was sleeping so much.So now, I find that I have a PFO and my heart functions abnormally and acts up. I'm very scared and worried as my dr. put me on toprol to slow my heart rate and take 1 asprin once a day but my symptoms of chronic fatigue and shortness of breath exist. He told me at my age there would be a risk if he fixed the hole I could have a stroke or heart failure as it would be a shock to the heart to function in a normal way.
I'm scared to have the hole closed because I might have a heart attack, stroke or die and if i don't have it done I still face problems and chronic fatigue everyday and heart irregularity.
Has anyone here had a PFO closed later in life? please be honest, any complications? did you feel better? I'm praying this would regain my life to have some energy again but the Dr. can not promise anything. He said I could be worse or fix it and still continue to live the same. He said normally they fix PFO's early in childhood or as an infant.
Please help.........
deleted_user
deleted_user
The source of the problem is the hole in your heart between the two upper chambers. This allows oxygenated blood to mix in with unoxygenated blood. YOur body is now accustomed to living like this and has tried to compensate for it. One of the ways that it does this is by speeding up your heart rate, the sinus tach. Another is by slowing you down so you have enough oxygen, the chronic fatigue.
I would try the meds first. The Toprol may make you feel more tired and a little light headed at first. That is because it blocks adrenaline (that's the simple answer). Your body should become accustomed to it in a few weeks. The aspirin is to prevent microclots, which could cause strokes.
I would also go online and find the best cardiac center in your area. Look at some of the teaching hospitals and you may need to do a road trip to reach it. Get a second opinion on the surgical options. U of M medical systems, Health Topics A to Z is the website that I go to for patient education materials. They do a nice job.
It is so scary when things go wrong with a heart. But also there is a lot of hope out there. Surgery is usually the last resort, since in order to get at the defect they have to stop the heart.
If there is anything else that I can do to help, I'm around Diane
deleted_user
deleted_user
I had a PFO and a defect- closure device implanted in Nov. 2008. It was done like a heart cath. I had a Cardiologist in Fort Worth Tx, Dr Baweja of Consultants in Cardiology to do the surgery. I am doing very well now. The device was a Amplater Occluder. If you look-up this device you may be able to find a Dr. in your area. Good luck.
deleted_user
deleted_user
I just had my PFO closed on May 29th. I am 33 years old, mother of two and a runner. My symptoms started in my second pregnancy. I have had tia\'s, lesions on my brain, exhaustion (most of my life), ischemic colitis. Looking at me from the outside I look totally normal. They found the hole after the g.i. doc and the hematologist suggested to look for it. They found it in March and now it\'s closed. I had very little reservations about having it closed because living a life a life on plavix and being afraid to run was not an option I wanted to choose. The whole journey has been about 3 1/2 years. Also, when they did go in to fix it, they found it was almost ten times the size they originally expected. Perhaps you should find a good cardiologist to consult with.
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