Donna's Guestbook

Hi Donna, I read your story. Good luck in surgery and healing post surgery. I had an aneurysm in my ascending aorta and a bicuspid valve as well. Found out in 2007. Complete shock- no symptoms however was told At the age of 16 I had a heart murmur and to take drugs before my teeth cleaning, and I was good to go! I had my surgery at Mt Sinai- they saved the bicuspid valve and used existing tissue and created a tricuspid out of it. It was apparently in good enough shape to do it. So no valve replacement. Aneurysm is gone. I am a young 45, and and a year and 8 months out from surgery now. Still healing, doing well, cardiac rehab is a blessing. Please reach out should you want to ever talk about anything. Said a prayer for you- glad they found your aneurysm before it was too late. This site is a huge help and support. I would have been lost without it. Take good care of yourself and be patient with the healing process. We all heal differently. Christine Pittelli

Good luck with your surgery Donna, my thoughts and prayers are with you. Two years ago I had the same diagnosis you have, Aortic Stenosis,Bicuspid Aortic Valve and Aortic Aneurysm. I had my surgery at Johns Hopkins Hospital in Baltimore, Maryland, May 12th 2014, my aneurysm was repaired and I received an artificial bio. aortic valve. Everything went rather smoothly for me, thankfully, I was doing so well I was released two days early, which I was very happy about. I was able to watch the, 2nd leg of the triple crown, The Preakness Stakes from my living-room at home. Adam's book was a big help to me, it gave me a better idea of what to expect. And in hindsight the entire operation and recovery was not nearly as bad as I had imagined, not that I want to do it again anytime soon. But as with a lot of things the images our imaginations conjure up are usually way worse than then the reality. I hope this will be the case for you as well. Now looking back nearing the second anniversary of my surgery I actually at times almost forget I have an artificial aortic valve, it functions normally I've not had any issues post op. (crosses fingers for this to continue). Seriously though usually the only time I think about it now is when I either feel or see my scare, which is way less noticeable than I ever thought it would be. Or when I glance down and see the medic alert bracelet I wear (Lauren's Hope, medic alert jewelry that doesn't look it). I'm glad I listened to my spouse who insisted I see a cardiologist, which saved my life, I was misdiagnosed and misinformed about 30 yrs. prior, I was told I had MVP and it was minor and nothing to be worried about. Thankfully I saw an amazing cardiologist who knew I had been misdiagnosed the moment she listened to my heart for the first time. She ordered the appropriate tests, which revealed I needed to have a consult with a Cardiac Surgeon, she sent me to one of the best in the area, Dr. Duke Cameron and after the consult my surgery was set for May of 2014. As for what to take to the hospital the people who said take very little are correct, you don't need much that they do no provide. I didn't have any groin incision that someone mentioned but, boxers were comfortable in bed and while walking the halls with the open back hospital attire. I watched a little TV but, between the surgery, pain meds and sleeping in a strange place, I found I did several little cat naps during the day, so I really wasn't able to read much without nodding out here or there. Visitors were nice when I had them and the time in the hospital 5 days went rather quickly really. Feel free to ask any questions you may have, happy to help any way I can. Everyone on this website I've had contact with since I joined it has been very nice and helpful, most are willing to answer any question you may have pre, or post surgery. I'm sure you'll do fine and be back home and on the mend soon. Good Luck!!

Hi again, Donna! I just read your journal and had to respond because my situation is so similar. I am only 47 years old and have had my aortic valve replaced with a St. Jude valve and also had the mitral valve repaired eight weeks ago. Born with it, like you, blown off by my own primary care doctor for years. Have wondered why I'm more tired than other people, etc. I am eight weeks post op and can't wait for the day that I can actually walk around the block without feeling like passing out! (can't do that today either). I will stress to you the benefit of doing the post op cardiac rehab offered. It keeps me going and has been a huge help. Best of everything to you - I too, have children - three boys - so I am fully with you on that emotional roller coaster as well. I have no idea how they survived without me for a week while in the hospital!!! (In my own mind of course) They did turn out to be attentive care givers which is important. It's hard, but you will learn to appreciate such smaller things in life as I have. Erin

Hi Donna, Your story sounds just like mine. -including the hard-headedness! I had my St. Jude valve put in when I was 38 - so 26 years ago. I felt so, so much better and the coumadin is only a slight nuisance...better than having it replaced every 10-15 years. I am now in my 60's and have had a few other issues including the aneurysm they found on New Years's Eve. I had that surgery on March 3 and the doctor was going to replace the aortic valve if he needed to. When he got in he said that at 26 years it looked like new so he only did the aneurysm. Since I am older now - the recovery has been a bit slower with some minor complications. This is not a piece of cake but you will feel so much better and have so much more energy. Just prepare yourself for good and bad days. Email me if you have any questions and I look forward to following you!

Hi Donna, Your story sounds just like mine. -including the hard-headedness! I had my St. Jude valve put in when I was 38 - so 26 years ago. I felt so, so much better and the coumadin is only a slight nuisance...better than having it replaced every 10-15 years. I am now in my 60's and have had a few other issues including the aneurysm they found on New Years's Eve. I had that surgery on March 3 and the doctor was going to replace the aortic valve if he needed to. When he got in he said that at 26 years it looked like new so he only did the aneurysm. Since I am older now - the recovery has been a bit slower with some minor complications. This is not a piece of cake but you will feel so much better and have so much more energy. Just prepare yourself for good and bad days. Email me if you have any questions and I look forward to following you!

Hello Donna, welcome to the site nobody wants to come to. I'm glad you found it! I was diagnosed in 2003, and had my surgery in 2014. Feel free to read through my journal. I'm more than happy to answer any questions you might have. There is a TON of support on these pages, from people who are newly diagnosed and may still have a 10-year wait for surgery to those who had surgery years ago. We're here for you! -Meredith