Reflections of my Heart

April 16, 1976 at 9:06pm the most courageous little girl I know was born. Melissa is my cousin, for the past 32 years she has shaped my life's' passion with her inspirational story. This blog will be my attempt to tell her story up until now and take you along into the future on the journey of her heart transplant. As for the title: Melissa means Honeybee in the baby books.

Melissa was born at Aurora Presbyterian Hospital, her mom (Judy) knew that something was wrong right away even though she couldn't get anyone to listen. Within days they knew that Melissa had a heart murmur. "Not to worry", they said. A few days later they found out that Melissa had Tricuspid Atresia , this means that there is not a valve between the right atrium and the right ventricle., she also had a VSD, (ventricular septal defect) This is a hole in the septal wall between the ventricles. Her right ventricle was very little and not pumping blood the way it should. Then they also found an ASD, (atrial septal defect). An atrial septal defect is a hole in the wall between the two atriums. This hole was enabling the blood from the right side to mix with the oxygen rich blood on the left side, thus giving Melissa a blueish tint to her skin. This beautiful little hole saved her life. Within days they had her in the operating room to put a balloon in the hole and stretch it even bigger. The next few months proved very difficult, Melissa was miserable and cried 24/7. At her next Cardiology appointment at Denver Children's Hospital the doctor knew immediately that Melissa was in trouble. He took her from Judy arms and ran down the hallway for surgery. The hole was closing and they put a lifesaving Shunt into the hole to keep it open. A day later the Shunt closed down and Melissa was back in the operating room for yet another open heart surgery. The family was told at this time that Melissa would need more surgery as she grew up. When she was 5 years old they went to the Mayo Clinic in Rochester, Minnesota. Melissa underwent open heart surgery and had the Fontan procedure. The Fontan is where they bypass the right ventricle and connect the right atrium to the pulmonary artery. (They had only done 200 of these surgeries at the Mayo Clinic). The surgery was successful at first, then Melissa started having difficulty with fluid retention. Her pulmonary artery was blocking from scar tissue. They also realized while trying to take out the breathing tube that they had accidentally severed her phrenic nerve and she was unable to breathe on her own. They tried several times to remove it with no avail. She had a surgery to put a tracheostomy in for her to breathe. She was on a respirator for the remaining time at the Mayo Clinic to allow the phrenic nerve to regrow. About 2 months after the first Fontan they took her in for a re-do. (This was un-heard of, as she was the first child to have a Fontan re-do). She was released from Mayo Clinic after about 6 months, via air ambulance to the care of Denver Children's Hospital. When they came back to Denver they tried to remove the trach tube again, at this point they knew that she had grown scar tissue in the trachea and they tried a balloon procedure to stretch it every month for about one year. They then decided to do a reconstruction using a piece of bone from her ribs. Eventually, she healed nicely and breathes well on her own. She continued to have fluid build up and go in and out of congestive heart failure while living in Denver. She was on constant oxygen due to the high altitude. The family was advised as a lifesaving measure to move to lower altitude. At that time the family moved to Arizona. She has lived as normal life as possible with a multitude of problems with fluid retention and occasional heart failure. (she also has no ability to clean and organize her room).

The Fontan surgery has had one major side effect and it is call PLE, protein losing enteropathy. It has taken me a lot of study to get and to understand what PLE is. Let me try to explain it. The right ventricle is no longer there, it is responsible for pumping the blood from the right side to the left. Now it swirls passively into the fontan and moves slowly into the left side. The passive swirl causes backup in the right side, eventually the back up effects everything including the liver and the intestines. The intestines then gets inflamed. This chronic inflammation causes Melissa to not be able to retain her protein. She leaks her protein into her belly and her legs. (Here is my analogy, it is like a traffic jam, a bad traffic jam......where the freeway is so backed up that all of the oncoming traffic gets blocked up and then the side streets are blocked up and then road rage begins). Currently, Melissa is retaining so much fluid from the PLE that she must have a pericentisis (fluid taken out of her belly) once every three weeks. She also gets IV Albumin (protein). Her potassium is very low and she must watch her levels constantly. Potassium is vital to a normal heart rhythm.

Finally, it is time to talk about Heart Transplant. This news came in the spring of 2008.