Search

Disclaimer

By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

These stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Express Yourself

Minimize

Tina

Jan 11

Posted by: ACHA
1/11/2013 4:34 PM  RssIcon

In 1965 I was born with congenitally corrected transposition of the great arteries; Dextrocardia (heart on the right side); associated ventricular septal defects and atrial septal defects, subpulmonic stenosis. As a bonus all my vital organs are opposite, but function normally. I’m posting this so Craig knows that there are more of us “oldies” out there with CC-TGV.

It was evident at birth that there was something wrong with me because I was a blue baby. I had extremely limited exercise capacity and wasn’t able to (or I was kept from) participating in recess or sports growing up. I didn't have my first surgery until 1976 when I was 11 years old because there hadn't been many successful surgeries with my level of complexity before that. In that surgery, I had the insertion of a morphologically left ventricle to pulmonary artery conduit and closure of septal defects (total of 5 holes). However, a few of the ventricular defect patches failed early on and I still had a couple of holes.

I am one of those “lost to care” stories because I was always told that I was “fixed,” so when my pediatric cardiologist retired when I was 21 years old, I quite seeing a cardiologist. However, as the years progressed, it became obvious that the “fix” was just a “repair” that would have to be attended to again. When I was 27 years old, I had replacement of LV to PA conduit and repair of the septal patches in 1992. Complete heart block resulted from the surgery and the placement of DDDR pacemaker was made. I have had it changed/updated several times since then.

After the 1992 surgery, I became a “care convert” and have faithfully seen my ACHD team every six months since then. As of July 2012, there is some blockage in the conduit and mild to moderate leakage in my tricuspid and aortic valves. I live a pretty active life. I work fulltime and am active in service organizations in my community. Even though I still have limited exercise capacity and can’t run, I decided to walk a marathon for my 40th birthday. Since then, I’ve walked another full marathon and several half marathons. I’m a bit off and on with an exercise routine, but I’m trying my best to get back at it. Life is good and I feel so grateful for all the wonderful cardiac care I’ve received over my lifetime at Orange County Children’s Hospital (CHOC), UCLA, and Oregon Health Sciences University (OHSU).

Blog List
There are no categories in this blog.
Skip Navigation Links.