Kelli

Kelli began her CHD odyssey 17 years ago and has handled her problems with amazing courage and a positive attitude. Her first surgery was a B-T Shunt done when she was one year old. When she was three, a modified Fontan was done. Another open heart surgery was done two years later to repair an ASD and a final revised Fontan was done four years ago.

During her first Fontan, complications arose when a catheter tip became lost in her bloodstream. After burning many x-rays, it was located in her left leg. Surgery on her leg was performed in order to retrieve it. Fortunately, it didn't go to the brain. As if that wasn't enough to keep everyone scared enough, an earthquake shook the ICU causing IV bottles to sway and the lights to flicker.

Several months after her ASD repair surgery, Kelli's voice began to sound extremely hoarse and an examination revealed a build up of scar tissue in her throat due to the respirator tube scraping her throat. Laser surgery fixed the problem.

Kelli's real fight came during her final Fontan when she spent a month in the hospital struggling to recover. The other surgeries were bad dreams, but this time it was a nightmare. The surgery itself turned out to be unexpectedly difficult. Getting her heart restarted again and then getting her blood pressure up wasn't easy for the surgical team. Her heart was swollen too much to close her chest and that had to be done the next day. While recovering from the surgery she had a mild stroke resulting in left side hemiparesis and after therapy, Kelli still has weakness in her left hand. Peripheral neuropathy was also a problem causing pain in her toes. Kelli was not a happy camper and was ready to escape if she could. Fortunately, either my wife or I were allowed to stay with her overnight which made a big difference. Kelli also had a lot of arrhythmia problems that had to be dealt with on top of everything else and a pacemaker was implanted.

Currently, Kelli is being treated for arrhythmias and visits an electrophysiologist frequently. In order to keep her from falling behind in her school work, she is being homeschooled for the rest of this year. Too many absences for medical appointments and hospitalizations interfered with her regular schooling. She spends as much time on the computer as she can working on her web site, chatting with friends and her brother who is away at college, writing stories and learning Photoshop. On the internet she is known as "Eccoblue." She enjoys art and has taken award-winning photos. She is into anime, video games and likes movies, cats and dolphins. Her overcoming so much has made her strong and made her mom and dad proud.

November 12, 2003 Update

Beginning in 2000, new problems developed. Kelli suffered from the symptoms of drug-induced lupus brought on by procainamide, which also caused knee swelling and a chronic pain in her arms and legs. Soon, GI pain began and she was found to have gallstones and a laparoscopic cholecystectomy was performed. From that point on she developed intractable ascites and has been in the hospital for paracentesis over a dozen times to drain the abdominal fluid.

Kelli spent a 53 day run in three different hospitals, being transferred from one to the other. She went through test after test, scan after scan until the doctors found the cause of a new abdominal pain, which turned out to be peritonitis. Her liver and spleen were enlarged adding to the pain factor. Due to the pressure from large amounts of ascites, she developed a large, protruding hernia, which was surgically repaired twice, resulting in her navel being removed.

We have just learned that, due to venous pressure problems from her Fontan circuitry, Kelli's liver is in failure. A transjugular intrahepatic porto-systemic shunt was cancelled at the last minute because it was deemed too risky due to her delicate condition. That was to help control the rapid forming ascites and buy her time until she can receive a double transplant--heart and liver.

— Ana and Bob, Kelli's Parents (Southern California)