Patricia 's Journal

Cheryl Mann  Walking 30 min per day will make your heart stronger, which would help you have a better result and shorter recovery if you ever do require surgery.  It is definitely a good place to start.

Richard Munson  I thought the new normal was to have surgery before you start having symptoms. 30 minutes does not seem that long but what do i know. 

Greg Lewis  From what you say, it sounds like you have symptoms, and pressures go to severe when walking, or doing much? What is the valve area at?  I am not a doctor, but if it was me, I would get yet another opinion someplace else. 

Patricia Smith  Thirty minutes of walking is not a problem for me most days. However, I can not do incline walking any longer. Before the symptoms started, I walked 45-60 minutes 4 to 5 times a week. I also have a daily yoga routine, but I had to cut that back to stand-only stretches. My heart and arteries are perfect except for the aortic stenosis and left ventricle thickening. My concern, in yet another opinion, is that the metrics used to determine surgery are all still in the moderate range. The opinion of the Mayo Clinic was to wait due to my age, too young, they say! Ha! I have not heard that statement in a while. If I were to decide on another opinion, I am not sure where I would go since the Mayo clinic is considered the expert in this area. Perhaps some guidance on the questions to ask my local cardiologist? The last time we spoke, he told me that replacing the valve too early did not have good outcomes. Is this what others have experienced? Thank you all for responding to my concerns. I was beginning to think I was making too much of a big deal out of this! I have really felt alone.

Craig Ostfeld  Hi Patricia, I feel like I'm going through something similar.  When to do surgery, or can it be avoided?  I have no symptoms and I'd like to put it off.  Who knows what technology is coming down the pike.  But I have been reading, more and more, they're becoming aggressive in operating on symptomless patients because of the risk of sudden heart failure.  I'd second what Greg says. get another opinion.  Although how do we know what's right?  Good luck!

Klara Čičić  It is the hardest question of all. I was also in the grey zone. I got three cardiologist opinions, one to wait, two to go. Did a lot of research myself. In the end you are the one making the decision based on all the information, ugly truth.  I had my mitral valve repair at 33. Time will show was that the right thing to do. 

Jay Heagerty  Patricia, I was followed for two and one half years at Mayo Clinic in Florida prior to having my surgery. I would go in every six months to check my bicuspid aortic valve and ascending aortic aneurysm. I had confidence in my Mayo team and after 2.5 years they finally said it was time. If your symptoms are getting worse, I would certainly let them know. I think my message is you have to find a provider you trust. Best of luck to you.

Pamela Gregory  I also went every 6 months as it got closer to severe. I was asymptomatic till the last couple of months. I had several opinions that all said the results of the echo and what they see plus How I was feeling determined when the right time was

Greg Lewis  Mine was watched yearly for 15 years. Then the valve area, got under 1cm2, and I had symptoms. Not sure what the velocity was or the pressure. It was then time for surgery. In this country, we don't have to decide when to do it. The doctors make those decisions. 
But to me, it sounds like you are not comfortable with their recommendation,  so in that respect, I would get another opinion.

Rhodie Jacobson  This is so close to what is happening to me! My cardiologist retired so I took the opportunity to look around...to find a hospital with much more experience with valve issues.  shortness of breath has increased and fatigue is new. I also now have edema so I thought the newest test would reflect the new and increasing symptoms but everything just came back moderate...moderate regurgitation.... I just feel a mismatch. I don't know whether to push, or how much. 

Patricia Smith  I hear ya Rhodie Jacobson! I have been pondering this most of the day. I think the best measurement is how it affects my day-to-day life. I would like to make one thing clear; I do trust my current cardiologists, one at the Mayo Clinic and one locally. I tend to minimize symptoms to them due to my upbringing by a nurse/nurse practitioner; unless I was dying, anything else was dismissed. I also am a strong believer that we are responsible for our own health. However, I almost died as a result of this thinking, a story for another time! Hearing all your advice, I think I will try it for another month their way, measurement of activity and symptoms. If I do not see improvement and/or if symptoms worsen, I will contact one of them. I haven't decided which facility I will use for surgery. I do have one more question...as far as sudden heart failure, does that have any pre-symptoms...swelling of ankles, etc. I have none of that, and I am just wondering if it can happen at short notice. Thank you all for your input and for letting me vent my concerns. Best health to all of you struggling to understand heart diagnoses 

Carol Jackson  I got 3 opinions and decided on Mayo Clinic Rochester, MN with Dr. Kevin Greason. I've had repair of my ascending aortic aneurysm in 2013, my aortic valve went from moderate to severe stenosis very quickly in fall 2021,  TAVR (with Dr. Greason and Dr. Eleid) to replace my aortic valve in Feb. 2022, and returned for follow up Feb. 2023. Mayo Rochester is my safe place and I trust them totally. You have to find a doctor and a place that you trust.