I was born with a congenital heart defect. In the 1970’s it was called a ventricular septal defect, but these days it is called Eisenmenger’s Syndrome, obviously by a Dr. named Eisenmenger. Actually what it is, is a hole in the tissue between the right and left ventrical. It wasn’t discovered until I was 17 years old. By then it had caused great pressure in my lungs. I had Pulmonary Hypertension secondary to Eisenmengers Syndrome. Nobody wanted to do surgery, so i went on with my life. I went back to school and received my nursing license. I had my first surgery in 1992, to repair the heart at the Cleveland Clinic. It was a success, my pressures in my lungs came down and I healed well. I went back to work and was able to work for seven more years, before my lungs became worse. I had a right heart cath in 2000 and was put on a medication called Flolan which I received through a catheter in my chest. I was on Flolan for 9 years, couldn’t work any more in a hospital setting and just waited until my lungs were bad enough to go on the transplant list. I had my double lung transplant at the Cleveland Clinic in 2009.
I want to talk about all the joys and all of the difficulties that I experienced through this journey which is not over yet, so please follow with me on this blog and share your experiences and comments with me