Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
GO

Special Topics and Concerns

Arrhythmia

An arrhythmia is an abnormal heart rhythm, either fast or slow. It can be in either the upper chambers of the heart (atria) or the lower chamber of the heart (ventricles). The links below will provide you with additional information.

American Heart Association: Arrhythmias 

Cardiac Arrhythmias Research and Education Foundation, Inc. 

Abstract 
Kanter RJ, Garson A Jr. Atrial arrhythmias during chronic follow-up of surgery for complex congenital heart disease. Pacing Clin Electrophysiol. 1997 Feb; 20(2 Pt 2): 502-511.

Long QT Syndrome 

SADS Foundation 

Abstract 
Thorne SA, Barnes I, Cullinan P, Somerville J. Amiodarone-associated thyroid dysfunction: risk factors in adults with congenital heart disease. Circulation. 1999 Jul 13; 100(2): 149-154.

Abstract 
Warfield DA, Hayes DL, Hyberger LK, Warnes CA, Danielson GK. Permanent pacing in patients with univentricular heart. Pacing Clin Electrophysiol. 1999 Aug; 22(8): 1193-1201.

CHD and Pregnancy

Women with congenital heart defects (CHD) now make up the majority of patients with heart disease seen in pregnancy. Pregnancy is well tolerated in many patients with CHD. However, pregnancy in some cases poses a high risk for significant cardiovascular complications and even death. It is highly recommended that any CHD patient contemplating pregnancy should consult with an ACHD specialist.

Heart Disease and Pregnancy 

Abstract 
Allan LD, Crawford DC, Chita SK, Anderson RH, Tynan MJ. Familial recurrence of congenital heart disease in a prospective series of mothers referred for fetal echocardiography. Am J Cardiol. 1986 Aug 1; 58(3): 334-337.

Abstract 
Boneva RS, Moore CA, Botto L, Wong LY, Erickson JD. Nausea during pregnancy and congenital heart defects: a population-based case-control study. Am J Epidemiol. 1999 Apr 15; 149(8): 717-725.

Abstract 
Canobbio MM. Reproductive issues for the woman with congenital heart disease. Nurs Clin North Am. 1994 Jun; 29(2): 285-297.

Abstract 
Clarkson PM, Wilson NJ, Neutze JM, North RA, Calder AL, Barratt-Boyes BG. Outcome of pregnancy after the Mustard operation for transposition of the great arteries with intact ventricular septum. J Am Coll Cardiol. 1994 Jul; 24(1): 190-193.

Abstract 
Connolly HM; Grogan M; Warnes CA. Pregnancy among women with congenitally corrected transposition of great arteries. J Am Coll Cardiol. 1999 May; 33(6): 1692-1695.

Abstract 
Connolly HM, Warnes CA. Outcome of pregnancy in patients with complex pulmonic valve atresia. Am J Cardiol. 1997 Feb 15; 79(4): 519-521.

Abstract 
Connolly HM, Warnes CA. Ebstein's anomaly: outcome of pregnancy. J Am Coll Cardiol. 1994 Apr; 23(5): 1194-1198.

Abstract 
Genoni M, Jenni R, Hoerstrup SP, Vogt P, Turina M. Pregnancy after atrial repair for transposition of the great arteries. Heart. 1999 Mar; 81(3): 276-277.

Abstract 
Neumayer U, Somerville J. Outcome of pregnancies in patients with complex pulmonary atresia. Heart. 1997 Jul; 78(1): 16-21.

Abstract 
Perloff JK. Congenital heart disease and pregnancy. Clin Cardiol. 1994 Nov; 17(11): 579-587.

Abstract 
Presbitero P, Somerville J, Stone S, Aruta E, Spiegelhalter D, Rabajoli F. Pregnancy in cyanotic congenital heart disease. Outcome of mother and fetus. Circulation. 1994 Jun; 89(6): 2673-2676.

Abstract 
Saidi AS, Bezold LI, Altman CA, Ayres NA, Bricker JT. Outcome of pregnancy following intervention for coarctation of the aorta. Am J Cardiol. 1998 Sep 15; 82(6): 786-788.

Abstract 
Shime J, Mocarski EJ, Hastings D, Webb GD, McLaughlin PR. Congenital heart disease in pregnancy: short- and long-term implications. Am J Obstet Gynecol. 1987 Feb; 156(2): 313-322. Published erratum appears in Am J Obstet Gynecol. 1987 May; 156(5): 1361.

Women with heart defects lack info on pregnancy safety. Macleans.ca Health. Nov 20, 2006.

Cyanotic CHD

Some types of CHD result in cyanosis or bluing of the skin secondary to the fact that blood pumped to the body does not have enough oxygen. The following resources provide information about cyanotic CHD.

Abstract 
Ammash N, Warnes CA. Cerebrovascular events in adult patients with cyanotic congenital heart disease. J Am Coll Cardiol. 1996 Sep; 28(3): 768-772.

Abstract 
Armstrong BE. Congenital cardiovascular disease and cardiac surgery in childhood: Part 1. Cyanotic congenital heart defects.

Abstract 
Burlet A, Drukker A, Guignard JP. Renal function in cyanotic congenital heart disease. Nephron. 1999; 81(3): 296-300.

Abstract 
Miner PD, Canobbio MM. Care of the adult with cyanotic congenital heart disease. Nurs Clin North Am. 1994 Jun; 29(2): 249-267.

Electronic Health Records and Health IT

Webinar: Health Information Technology Orientation (September 14, 2011)

Additional information about the benefits of e-Health and electronic health information can be found here (September 2011).

Helping Consumers be Partners in their Own Health (September 9, 2011).

From the ONC Desk: Federal Strategic Plan to Reduce Health IT Disparities (August 25, 2011)

Video from Office of the National Coordinator for Health Information Technology: Advantages of Electronic Health Records (July 18, 2011)

Electronic Medical Record vs Electronic Health Record – What is the Difference?

Endocarditis

Endocarditis is an inflammation or infection of the inner lining of the heart. The resources below will provide you with more information.

Abstract 
Cetta F, Podlecki DC, Bell TJ. Adolescent knowledge of bacterial endocarditis prophylaxis. J Adolesc Health. 1993 Nov; 14(7): 540-542.

Abstract 
Cetta F, Warnes CA. Adults with congenital heart disease: patient knowledge of endocarditis prophylaxis. Mayo Clin Proc. 1995 Jan; 70(1): 50-54.

Exercise/Physical Activity

The following resources on exercise and physical activity are available for your information. Please consult your ACHD specialist before starting an exercise program.

Recommendations for Heart Health 

Congenital Heart Defects and Physical Activity 

Abstract 
Beekman RH. Exercise recommendations for adolescents after surgery for congenital heart disease. Pediatrician. 1986; 13(4): 210-219.

Fratellone PM, et al. Exercise and congenital heart disease. Am Heart J. 1994 Jun; 127(6): 1676-1680.

Abstract 
Fredriksen PM, Veldtman G, Hechter S, Therrien J, Chen A, Warsi MA, Freeman M, Liu P, Siu S, Thaulow E, Webb G. Aerobic capacity in adults with various congenital heart diseases. Am J Cardiol. 2001 Feb 1; 87(3): 310-314.

Abstract 
Fredriksen PM, Chen A, Veldtman G, et al. Exercise capacity in adult patients with congenitally corrected transposition of the great arteries. Heart. 2001 Feb; 85(2): 191-195.

Abstract 
Liberthson RR. Arrhythmias in the athlete with congenital heart disease: guidelines for participation. Annu Rev Med. 1999; 50: 441-452.

Not Sure What You Have?

Did your parents ever tell you that you that you had heart surgery as a child but you don't know any details about it? Are you unsure why you went to the doctor so much when you were a child? Are you wondering why you have a scar on your chest?

It is possible you were born with a congenital heart defect (CHD). For your continued well-being, it is important to know what type of CHD you have. You might be asking, "How do I find this information?"

There are several things you can do:

  • Ask your parents, siblings, aunt, uncles, or other relatives about your surgery and ask them for the details, such as your doctor’s name or the name of the hospital where you had surgery;
  • Request your medical records from the doctor or hospital where you received care as a child;
  • Make an appointment with an adult congenital heart specialist for a detailed evaluation and diagnosis.

Additional information about CHD can be found in our Resource Center. The ACHA Clinic Directory is also available to members.

Pulmonary Hypertension

Pulmonary Hypertension (PHT) occurs when there is high blood pressure in the arteries that supply the lungs. PHT caused by another disease, such as CHD, is known as secondary hypertension.