For starters I want to thank everyone in adavance. It's people like you that are saving lives and keeping people like me alive!
My first heart surgery was in 1974. I had a Blalock-Taussing shunt. It increased the amount of blood reaching my lungs but my doctor had to tell my mom that there was no cure, but perhaps in 20 years.
In 1994 20 years later I found myself going to Boston Children's Hospital. I was told I needed to decide on having Open Heart Surgery or just remain as I was. I was in my early 20's and without the surgery my mortality rate was 1-2% and my life span was shortened to 10 years. The procedure was to take two days.The first day I underwent a catheterization to close off all ancillary collateral arteries. The second day I was cut open and a 20-mm aortic homograft was implanted, ligation of the Blalock-Taussig shunt and a 16-mm Goretex graft between the pulmonary arteries was used. It was a success!
In 1997 I underwent another Open Heart surgery to repair the patch that was used. It was discovered that patch had pulled stitches and it was to close to the aorta to use a clamshell (cardioseal).
2024, I started retaining fluidd again, during my examinationit became clear that something was wrong. He had asked me earlier in the year to get a catherization just to get an accurate amount of pressure in my heart. However after this appointment, he feared there was calcification happening and this catherization became a lot more serious. We traved to Boston Childrens's Hospital to do the catherization and if necessary put in some stents. Results was everything they had placed in 1994 had completely calcified and unfortunately it was too risky to attenpt putting in a stent. The only way to save my life was to have another open heart.
December 11, 2024, I underwent my 4th open heart suregry at Boston's Womens Hospital. The Surgery lasted 12 hours. It was supposed tp be 8 hours but, I was "sicker" then anticipated making it a very compliated surgery. I was in the best of hand. My surgen has done thousand of these. He said mine however was the longest and most compliated surgery he performed to date. The surgery was a success. Unfortunatly I had a very rough time recovering, but I did!!
October31, 2025, I once again entered a hospital. This time is was Albany Medical Center as I was experencing Acute Respiratory Failure. Medication changes, the use of a bi-Pap maciine, plus oxygen 24/7 has put me back on the track. I don't like the wearing of the oxygen 24/7 and dislike the bi=pap machine but as I said, it's doing it's job, i'm doing better and I'm on this side of the dirt.
My goal - Team Rebecca's goal is to make sure the next person doesn't have go through all that I have had to endure. For starters I had to wait 20 years for research. Slowly that goal is becoming a reality. CHD is being discovered and repaired in babies before they are a year old and that is so awesome!
I appreciate any support you can give me and my team. Every little bit helps.
Rebecca Alford