Nicole's Guestbook

Wonderful news about your recovery! I too am facing OHS down the road. I have a bicuspid aortic valve and aortic root anyuresum of 4.5. No symptoms at this time. Surgeon wants me to wait till I do. I too pray I will have an uncomplicated recovery. Just a waiting game now. Exercising and trying to be in best shape I can be in when the time comes. I am 67. Was diagnosed about 5 years ago, didn't know I had this problem. What words of advice would you give in preparing for surgery? Debbie

Good Evening Nicole, I just finished my procedure for the same Bicuspid Aortic Valve, stenotic to 0.7cm , and an Ascending Aorta at 4.3. I too was monitoring it with a Cardiologist (and also my friend) for 6 years now. Wondering when would the pendulum swing from curious bystander to 'active' patient. 7 days ago I had my procedure. So far i think the trepidation and anxiety of the wait and the "what if's" were far tougher than the actual experience of the procedure. As you are probably aware of by now 1-2% of the population is born with a Bicuspid Aortic Valve. The number of procedures being done today are staggering. Do your homework , get your opinions and prepare yourself to be the best prepared "active Patient" you can be. AS for Me I prepared for the Worse, But expected the Best. I feel if anything I over prepared. But the comfort I got from that was immeasurable. I look forward to following your posts and progress.

Hi Nicole, I so agree with your description of meeting with your cardiologist and being told you needed the surgery. I'm 60 and my interaction with cardiologists was always similar - get the check up, find out it's still okay, then run up the stairs in the hospital parking garage instead of taking the elevator and mini-celebrate that all was good. Until this year when I changed cardiologists and found out I had an aortic aneurysm of 5.2 cm, a stenotic valve and it was surgery time. I am still in shock that my former cardiologist (who I had last seen 18 months ago) never once thought to do a CT scan to look for an aneurysm even though the occurrence of aortic aneurysm and bicuspid valve is EXTREMELY common and that co-morbidity has been known about for years (I know this NOW, I didn't a few months ago). Turns out my "watchful waiting" was just "waiting" because my ex-cardiologist obviously is not as skilled as I had thought. Anyway, my surgery is July 29th. I've been very confused as to which hospital, which surgeon, which valve type and even which cardiologist to use post-surgery. I've chosen the Inspiris Resilia valve over the On-X mechanical which is a "coin toss" in some regards because at 60 it seems to be a kind of "either/or" as to which valve works the best for the longest with the fewest problems.

Hi Nicole, My story sounds almost exactly like yours. I knew that I was born with a murmur, though, but it was called an "innocent flow murmur" and nothing to worry about. After my second child was born when I was 28 (I'm 53 now), my OBGYN thought the murmur had gotten worse and got me an appointment with a cardiologist who eventually diagnosed me with a bicuspid aortic valve. I, too, went to the regular appointments and got the echos and it was always "fine until next time", until it wasn't anymore. The doctor always said I would need surgery by the time I was in my 50's but I absolutely did NOT believe it. In fact, when he told me I needed surgery, I still didn't believe him so I got a second opinion. Long story short, I'm scheduled for valve replacement surgery on July 24th. I have aortic stenosis in the severe range. My last echo stated "critical stage". I'm going with severe, it doesn't sound as bad. I'm so glad I found this forum and have seen so many people, like you, who are around my age or younger, going through the same thing. When I found out I needed surgery I felt like this was something that only "old people" had to do. :) Best of luck on your surgery, and thank you for sharing your story!

Hey Nicole. I just had surgery May 6th to replace a monocuspid valve and aneurysm. The thought of the ICU is scary and waking up with all those tubes and things attached is a little frightening. When I woke up I don’t remember them removing the breathing tube at all. I think it was worse for my family than it was for me. The rest of the tubes are weird at first but when they remove them it is pretty quick. It is a weird feeling for just a few seconds as they pull the tubes out. Try to focus on something else when they do it and it will not bother you. And also how fast they are also should be good. I thought it would be way worse than it ended up being. The worst part for me was after waking in ICU I was so thirsty and they can only give you a tiny bit of water. So you will be begging for ice chips for a little while.

Nicole, Preparing for eventual surgery is a time of cramming to learn everything you can about your specific medical needs/conditions (this site is a great place to start your research ) and managing mixed emotions between an interest in the amazing advances in medical technology and times of being totally freaked out when you realize, this is me/ my surgery. In times of strength, I highly recommend watching a video of actual Surgery for the purpose of education and learning ( you may not have questions to ask a surgeon about a subject you know little about). As an example, I didn't know: Valve surgeons don't always open and close. How many types of incisions there are. Hospitals, Surgeons and Valve manufacturers advertise here and online. ETC... I highly recommend that you get a second opinion from the best Surgeon you can get to. Modern Air and rail travel is economical and available to get you to the best surgeons and hospitals. You do not need a doctor's referral to talk to a surgeon of your choice. After you do your research, you can just call and make an appointment. Remember that you are in control of your care. Be comfortable with the answers you receive and decisions you make.

Hi Nicole. I am in pretty much the same boat as you. My ascending aortic aneurysm is @ 4.7cm. At least it was last year. I have to have a new CT scan in July. My bicuspid aortic valve seems to be functional. Every year at this time I get a deep anxiety about my future. I haven’t picked a surgeon yet. I have Kaiser insurance and I’m not sure they have enough experience for my liking. So I’m always on here looking for other people’s experience. I hope all goes well for you.

Hi Nicole! Welcome to the Heart Warrior family! On my open heart surgery journey I found this website to be a Godsend as my wife and I dealt with the challenges and various emotions that came with the prospect of me facing open heart surgery. The heart warriors on here really helped us through this thing called open heart surgery, and I am sure you will find much encouragement and strength to go through this. Peace and blessings to you and your family!