Hostess Rise'
Forum Leader Username: Risa
Post Number: 10520 Registered: 05-2003
| Posted on Sunday, October 11, 2009 - 09:01 am: |
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By Kelli aka EccoBlue I was born with the congenital heart conditions: tricuspid atresia, atrial and ventricular septal defects, and pulmonary valve stenosis. My first heart surgery, a Blalock-Taussig shunt, was a palliative procedure at almost one year of age. At age three, a modified Fontan, open-heart surgery was performed, followed by leg surgery to retrieve a catheter tip lost in my bloodstream. At age six, another open-heart surgery was done to close an atrial septal defect, which could not be repaired using a catheter and an umbrella device. Later, scar tissue from respirator tube insertions caused breathing problems and was alleviated with laser throat surgery. My final Fontan surgery was in 1997. The surgery was unexpectedly difficult in trying to get my heart pumping again, maintaining my blood pressure and controlling severe arrhythmias. My heart was swollen too much to close my chest and that had to be done the next day. Then I had a mild stroke resulting in left side hemiparesis. Peripheral neuropathy also became a problem. A pacemaker was implanted to help keep my heart from beating too slowly, but never helped with my tachycardia episodes. A few years later, my knees became swollen and pain shot through my arms and legs. One of my medications, procainamide, induced lupus symptoms and messed up my nervous system. Next came abdominal pain from gallstones. A laparoscopic cholecystectomy surgery was performed to remove my gall bladder. From that point on I developed intractable ascites. Soon after, I contracted peritonitis. Hernias became a problem and my navel had to be removed to repair one of them. As of 05/23/08, I have undergone 149 paracentesis procedures to drain the fluid from my abdomen. In November, 2003, I learned my liver was in failure, secondary to the Fontan circuitry problems with my heart. I needed a new heart and a new liver to survive. I was placed on the Tx waiting list at the end of November, 2006 and received my heart and liver transplants on February 1, 2007. One week after the transplants, I coded and had to be opened up again to repair leaking vessels to my heart. My kidneys went out and I received dialysis for a month until they started working again. After 49 days, I was released and went home. So far, my biopsies have been negative. I still deal with intermittent abdominal and joint pain and go in for paracentesis procedures to drain out the ascites fluid, which I hope will finally stop soon.
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