ALCAPA

[Barbara__0__0]

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

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.
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
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.
Posted by Barbaa on July 23, 1999 at 22:37:58
Thanks so much for your help.  Another couple questions.  Would this be causing the shortness of breath?  How time critical is this?  I see my doctor in a week.  If I go to a larger center could I wait a few weeks, month....?  Now?
I am a little anxious, but I don't want to overreact.
Thanks again!!!
Barbara
Posted by CCF CARDIO MD - DLB on July 26, 1999 at 09:31:13
Dear Barbara
This condition can definitely cause shortness of breath - I cannot say for sure whether this is what is causing your shortness of breath. The few patients that have survived into adulthood with this condition often have shortness of breath and chest pain. As the solution to your condition involves open-heart surgery, you will have to abide by the schedule of the medical center where you are seen, but I would favor an evaluation sooner rather than later. If your symptoms start getting worse, I would seek an immediate evaluation. Avoid physical exertion until this is sorted out.
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.
Posted by Barbara on August 03, 1999 at 13:12:58
Well I went to my local cardiologist.  All my tests show that yes there is an ALCAPA condition but all the other heart parts are very healthy and functioning well. The doctor does not think the ALCAPA is causing my high blood pressure or shortness of breath.  He admitted though he wasn't sure what to do with it.  What exactly is the "bad thing" that would cause a problem or sudden death?  Is it the potential backwards flow in the left cornary artery from the heart to the pulminary artery?  Can the ALCAPA still be causing my symptoms or cause a problem later even though the heart checks out OK otherwise?  I think this doc thinks I am a little overconcerned.  Should I now go to a larger center for another opinion or am I OK?
Thanks so much,
Barbara

Posted by CCF CARDIO MD - DLB on August 06, 1999 at 09:57:51
Dear Barbara
I think that your concern is appropriate and I share it. Even later in life the condition could still cause problems, even if the heart looks OK overall now.
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.