Amanda's Guestbook

Hello Amanda, In 1985, a doctor heard a heart murmur while I was working in Boston. I am also tall and thin, and was asked if I was double jointed but was not.( another Marfan syndrome symptom). In 2019 I was diagnosed with a Ascending Aortic Aneurysm of 5.3 cm and a Bicuspid Aortic Valve. I am from Kansas City and a local surgeon wanted to replace the aneurysm and leave the valve alone. I chose to get a second opinion from Dr. Patrick McCarthy from N.W. Memorial and decided to have my surgery in Chicago. My aneurysm was replaced with a dacron graft and my Aortic valve was replaced with an Edward's 2700TFX bovine valve. I'm 3 1/2 years post surgery and every day , I am grateful and thank God for the choices I made. I believe everyone should ask for a second option from a top ten percent hospital and the most experienced surgeon they can get to! I believe there are a percentage of us tall, slender people with Bicuspid Aortic Valve and Aortic aneurysm that have most ( but not all ) of the symptoms of Marfans that haven't been published in a medical journal yet! After surgery, sleep is difficult!!! A fully adjustable recliner that you may want to sleep in is important when you can't sleep and don't want to disturb your partner. I was a side sleeper before surgery. A fully adjustable bed split down the middle ( in case your partner doesn't appreciate your settings) is critical to your return to normal sleep pattern. Fifty percent of the people who have valve surgery will experience AFIB after surgery and I spend several extra days in the hospital with AFIB.