I was diagnosed with a heart murmur when I was 18 and after a series of tests they concluded that my aortic valve was leaking about 25%. I was terrified and in disbelief because I felt normal so I avoided doctors for 40 years! I don't promote this approach but it allowed me to live the life I wanted and not be owned my a medical condition. Fast forward to January, 2018 I passed out briefly while attending a Chicago Bulls game and paramedics took me to Rush University Hospital and I was admitted. I spent 5 days at Rush because my blood sugar and heart tracers were high. The final result was Type 2 Diabetes and a very tight aortic valve which needed replacement. I was told to take care of any necessary dental work to get ready for surgery.
In March 2018, I had a horrible bleeding problem following gum flap surgery/cleaning. It took 3 surgeries, 7 days in an induced coma with a breathing tube and a 2 1/2 week stay in the ICU at a local hospital to recover.
I went to a Hematologist at Rush University in May 2018 who found that my Von Willebrand factor was slightly low and recommended I take Humate P, which is Von Willebrand booster, by IV just prior to surgery.
Following these experiences, I spent ALOT of time on researching, reading journals and communicating with other heart valve warriors on this. The thing that impacted me the most was that many people took charge of their situations and chose their hospitals, surgeons and valves. This was eye opening because I was on track to have surgery at Rush and didn't feel that I had any choices of surgeon or valve. I left the program that I was on and went to Northwestern Memorial which is # 7 in the country for Cardiac Surgery. I also chose Dr. Patrick McCarthy who is one of the top heart valve surgeons in the world as my surgeon,
On September 6, 2018, Dr. Patrick McCarthy replaced my aortic valve with an Edwards Inspiris Resilia tissue valve.
On September 9, 2018, I was discharged from Northwestern after a great surgery and hospital experience.
On October 3, 2018, a hematoligist at Northwestern explained to me that my original aortic valve was soo calcified and hard as rock. As my blood was passing through the valve it lost some of its clotting capabilities and I had acquired Von Willebrand disease which led to my previous bleeding problems. He also said that there is a relationship between Aortic Stenosis and Von Willebrand Disease.
He took some new blood tests following my AVR surgery and confirmed that the Von Willebrand Disease that I had was now gone because of my new aortic valve!
Thanks again to Adam for his book and this site and thanks to everyone here. You all helped me transition from being terrified my entire life of this surgery to being knowledgable, confident and ready for this journey!
More Info About Me & My Heart
More About Me
I am from:
My surgery date is:
September 6, 2018
I was diagnosed with:
Bicuspid Aortic Valve