Re: ALCAPA

Posted By Barbara on July 19, 1999 at 09:34:04
I recently had a heart cath because I was experiencing some shortness of breath.  I am 41, IDDM, female. The cath showed that I had no blockage of the arteries. GOOD! But the doctor said that my right coronary artery was very "big" and accounted for about 90% of the blood flow to my heart.  He said that my left arterior decending was coming from the wrong place but that it did not account for much blood flow to my heart.  He said that mine was not a problem and didn't think I needed any corrective surgery.  He said it was like the problem Pete Maravich had with his heart (he died!).  I looked up Pete on the Internet and found that the condition is called anomalous coronary artery from the pulmonary artery (ALCAPA). The two accounts I found talking about it sounded like most people born with it die in infancy.  Now I am kind of worried.  I am scheduled to have a follow-up echocardiagram.  Is it possible that my version of ALCAPA is indeed not serious?  What will the doc be looking for with the echocardiagram?  Is it dangerous that all my blood supply is provided by one artery?  From the litterature, it seems this condition is rare and I wonder how often doctors see this.  Should I take this to a larger center where this condition may have been encountered before?  What are the possible treatments?
Thanks so very much! Barbara

[CCF CARDIO MD DLB]

Posted By CCF CARDIO MD - DLB on July 19, 1999 at 12:47:08
Dear Barbara
This is a rare condition. I suggest you go to a large medical center for further evaluation. There is a risk of sudden cardiac death with this condition. Sometimes, surgical re-implantation is performed on the anomalous coronary artery, such that it is re-attached to the aorta.
I hope this has been useful. I wish you the best of luck. Feel free to write back.
Information provided here is for general purposes only. Specific questions should be addressed to your own doctor. If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

[Barbara__0__0]

Posted By Barbara on July 20, 1999 at 19:05:31
Thanks for your comments.  I talked to my cardiologist who is different from the doctor that did the cath.  He did confirm ALCAPA and realizes he probably needs to refer me to an expert.  Do you know of anyone who has treated this condition?  I live in Alabama. Is there anyone close?
If it wasn't for your forum I would have not continured to seek out the reason for my shortness of breath symptoms and would have not pushed my doctor to read my test results.  You truly save lives with this forum!
Thanks,
Barbara

[CCF CARDIO MD DLB]

Posted By CCF CARDIO MD - DLB on July 21, 1999 at 08:30:46
Dear Barbara
You need to go to a center with a lot of experience in cardiac catheterization. Of course, you could come here. If you wanted to stay closer to home, Emory University Medical Center would be an option. Let me know what happens.
I hope this has been useful. I wish you the best of luck. Feel free to write back.
Information provided here is for general purposes only. Specific questions should be addressed to your own doctor. If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter. The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.











Follow Ups:


ALCAPA Barbaa 7/23/1999
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Re: ALCAPA CCF CARDIO MD - DLB 7/26/1999
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ALCAPA Barbara 8/03/1999
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Re: ALCAPA CCF CARDIO MD - DLB 8/06/1999
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