Terry's Journal

Civita Fahey  Hi Terry I think the question is are you having any symptoms? I had had mild to moderate stenosis for a while and it went to moderate to severe and I had some slight symptoms, so they decided to operate.. They gave me a 6 month window and I had it done 5 months ago.. I feel great.. In my opinion a second opinion wouldn't hurt..I actually got 3 opinions before I got the surgery. best of luck

Clayton Mcarthur  Your cardiologist will monitor the progress of that and ask you what is your symptomatology if you keep track of that and do a good job you'll know when the time is right

Catie B  Mild to moderate stenosis doesn't require surgery, but if it moves into the severe range, that becomes more concerning. You could certainly get a second cardiologist's opinion about your case at any time.

Terry Kosinski  Thank you all! I have no symptoms now. I will get a second opinion. Not sure where to go though. Any particular place, hospital advised?

Jimmie Ramos  Hi all.. I am having aortic valve sugery on the 25th, my symptoms are pretty bad I think. I cant do very much that takes effort because it leaves me breathless. I also have emphysema. And I was just wondering which of the two is causing the worst shortness of breath.

Gerald Poulton  Thats hard to answer Jimmie because some people have symptons from the valve and some dont, but you will know soon because the 25th is not far off 😀 If you can do deep breathing exercises I strongly recommend you do so as the surgery can reduce your lung capacity up to 60% and it takes a while to get it back.

Craig Irving  I knew about my aortic regurgitation since I was 18. When I was 26 I decided to follow up with a cardiologist for my condition, and the first thing he said was that I may need OHS. I didn't like that answer so I found myself a new cardiologist that said that the valve wasn't that bad and decided to treat it with BP meds. I did fine up until this year, when I finally had to have the valve replaced 2 weeks ago. Now I wasn't very kind to my heart in those years, for I loved bad food, good beer, and long runs. Take care of your heart and you may never need the operation. Definitely get a second opinion, but I would tend to trust the doctor that told you that you're ok for now.

Elaine Foster  Hi Terry, I was diagnosed the same as you about 5 years ago (age 55 then) I had been told I had a heart murmur a couple of years before that. I was short of breath, so had Echo cardiogram and that was when they found it was bicuspid aortic stenosis. The Cardiologist said I had anywhere from 1- to 5 years before surgery. 2 years from that I found I was shorter of breath and more tired. Surgery was suggested, but not emergency. I could have waited, but I made my choice to have surgery, because it was not going to get any better and my life was slowing down. So, all that to say I don't know where you live, but I had surgery in Greenwood IN, and Fransican St. Francis Hospital, and my surgeon was Dr. Marc Gerdisch. I highly recommend him. I found him on this site, and was very happy with him. I had no complications and was home after 3 days. I had too, had a second opinion. So, I am happy to answer any questions you have.

Rose Madura  Hi Terry, a second opinion wouldn't hurt. Ask the cardiologist which surgeon they recommend and then you can check them out on the internet. Regarding symptoms, I think that waiting for symptoms is somewhat "old school". The cardiologist I had for years kept telling me to come back the next year unless I have symptoms. But he retired and my new (and younger) cardiologist said that the practice nowadays is to operate before you get symptoms. I had two other opinions and they said the same. But having said all that, it boils down to each case is different and there really isn't a cut and dry answer. Hope this helps. Best wishes and please keep us posted.

Alan Lonsberry  Terry I lived with a diagnosis of bicuspid aortic valve with severe regurgitation fir 10 years with no symptoms and I did marathons and ironman triathlons. I had echos every 6 mos to monitor it. Monday I had the valve replaced. My cardiologists never limited me either. When it is time you will know.

Alan Lonsberry  Terry I lived with a diagnosis of bicuspid aortic valve with severe regurgitation fir 10 years with no symptoms and I did marathons and ironman triathlons. I had echos every 6 mos to monitor it. Monday I had the valve replaced. My cardiologists never limited me either. When it is time you will know.

Cathleen Weed  Alan...I think you mean "chronic" (meaning ongoing) aortic valve regurgitation, not severe the whole time (until the end stage). Those of us born with a bicuspid valve are listed as chronic the entire time until surgery because it's an ongoing problem that will continue to progress throughout life and won't get better without surgery eventually. Our symptoms don't feel as severe because we get used to living that way. We don't know any different. I also competed in high level (non-contact sport) fitness until my surgeries...and after as well. I was also followed every 6 months. Once it reaches the severe stage though, surgery is imminent and usually performed within a year at most because of the domino effect on the heart. The left ventricle becomes enlarged from the back flow of blood and the myocardial oxygen supply is compromised...you develop shortness of breath, chest pain, etc. and makes it impossible to climb stairs for example. I lived 19 years with my chronic bicuspid aortic valve regurgitation and only felt the effects in the final year when the condition became severe. At that point I had surgery within 4 months. Aortic stenosis can be very asymptomatic (even when severe)...I know, because I just went through that with my most recent valve...I was so asymptomatic that I almost waited too long. On the other hand, severe aortic regurgitation knocks you out. Been there, done that. A person can have both issues at once as well. I don't want Terry to be confused by your post since she is new to the group and looking for answers. I think details are important.
Terry, it would be helpful to get more specific information from you. Was a follow up echo scheduled? What was the level of stenosis? Is it a bicuspid valve? That sort of thing. I'm a nurse, if that helps. I've also had 4 aortic valve replacements. Many people on here have been in your position and understand your concerns. If your stenosis is mild or moderate and you have no symptoms then you have a while. You can always get your records together and submit your information to another cardiologist or surgeon to be on the safe side. Now that you know about the condition it's good to get as much information as possible so you can formulate a future plan for your health and your peace of mind.

Joshua Trimberger  I have been a pro hockey player for the last 2 years with a Bicuspid Aortic valve and my cardiologist gave me no restrictions. Being active was good for it. He said I would know when I became symptomatic because I wouldn't/couldnt want to be active and he was right. You should be fine just follow his advice and make sure you are following up with echoes and the other tests every 6-12 months as prescribed.

Alan Lonsberry  Cathleen i am a nurse in surgery with 18 years experience, so don't tell me what I think I mean. My cardiologists as well as the dozens of echos I have had say "moderate to severe regurgitation " I can't make it any clearer than that.

Cathleen Weed  Yes, now that you add "moderate", of course "moderate to severe" can last for years, as mine did, but once it is solely a case of severe regurg, which is what you first stated, it will cause the heart to enlarge and fail by causing left ventricle dysfunction. That is where our miscommunication was. Simple. Thank you for clarifying that for her. Terry needs detailed information right now. Regardless, she has stenosis not regurgitation so this a pointless little argument. I know we are both nurses (my specialty is cardiac) and being a patient advocate is part of our job description. I realize post surgery is an emotional time so if I somehow offended you, I apologize :). Glad you are feeling better. Hi Terry :) Let me know if you have any other questions <3. There are many people on here with your condition.

Kevin Lee  Terry, I can tell you the best thing that I did was find a Cardiologist that I was comfortable with. Also, understand that your Cardiologist will more than likely not be a surgeon which is okay. And get lots of second opinions. In my twenties I was told that my Aortic Valve had a life span of about two more years. I was born with a bicuspid aortic valve and now, at the age of 32, I have to have it replaced this August due to severe stenosis. (I made it last ten more years instead of just two). As far as working out, listen to your Cardiologist and your body. The good thing about Cardiologist, they often are able to see how severe your situation is before symptoms start to arise. Don't rush to surgery if you do not have too. As my Surgeon told me, nothing beats what the good Lord gave you. Also, listen to your body, if you start feeling different, make sure to let your doctors know.