Hi Everyone! I am new to this group. My son Michael is 17yrs old and 7yrs post transplant...below is his story Michael was born at 36 weeks with Hypoplastic Left Heart Syndrome with a double outlet right ventricle. He was diagnosed in utero at 22 weeks with this. We were give 3 options. They were: 1) do nothing and take him home to die 2) terminate the pregnancy 3) have the 3 stages of the Fontan. We chose to go the surgery route. At 2 days of age Mikey had the Blalock-Tausig Shunt surgery. This was the first of the three open heart surgeries. At 6 months of age he had the second surgery, the Bi-Directional Glenn, and when he was 2yrs old he had the third surgery which was the Fontan. In-between the 2nd and 3rd surgery, Mikey had a very hard time gaining weight and was put in the Hospital for Sick Children in their weight gaining program. Mikey was tube fed until age 3. After his Fontan, he did really well and finally started growing, and was down to only 2 medications. In October of 2005 Mikey was diagnosed with Congestive Heart Failure (CHF) and then the rollar coaster ride started. We were then put on more meds and oxygen. As time went on his sats started dropping. June 2006 the doctors felt that there was nothing left but to get him listed for a heart transplant. The right side of his heart ( his only good side) was starting to decrease in its function. Mikey was listed as a level 2. This meant that we were waiting at home. In October, Mikey developed two Embolisms. One in each side of his pulmonary arteries. His Fontan was failing. In Dec. 2006, we went to Pittsburgh for an outpatient follow-up and were admitted. Mikeys condition was getting worse and they bumped him to the top of the transplant list. We were told that he was dying and to just enjoy him. On Dec. 22, 2006, we received the call that a donor heart was available! At 2:40am on Dec. 23, 2006, Mikey received his 2nd chance at life! Michael is not cured. We have dealt with a few rounds of acute rejection and recently chronic rejection. In August 2013, Mikey went into cardiac arrest during a minor procedure. his kidneys took a hit. he has also been diagnosed with CAD that has gone from mild to moderate and is not a candidate to be re-listed. He is going next week to have some stents put in an artery that is 90% ecluded......
Posted on: Fri, 07 Mar 2014 02:47:23 +0000
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