BAV - first post!

[shanwow1]

Hi everyone. First off let me say I have been a lurker off and on here since March 2011 when I was officially diagnosed with BAV. I am so grateful for all the experienced members who stay active in the forums in order to help us newbies. Thank you!

So this is my first post to introduce myself as I plan to be an active participant on this site for many years to come. I am 26 years old and I have always had a noticeable heart murmur, which the doctors always told my parents was nothing to worry about. However, my dad had open heart surgery to repair an aortic aneurysm in 1967, so I knew there was a family history there.

Surprise! In the fall of 2010 I got very sick and ended up with a chronic cough and chest tightness. I was referred to a pulmonologist who couldn't find anything wrong with my lungs, but after finding an aortic anomaly (pseudocoarctation of the descending aorta) on a chest x-ray, plus the fact that I was having semi-frequent palpitations, decided to send me for an echo in March 2011. They found that I had what was classified as moderate to severe aortic valve regurgitation. The pulmonologist was very concerned and contacted a cardiologist immediately to find out if it was even safe for me to go home that day! The cardiologist wasn't as concerned, but booked me in for 3 weeks later, when they did some baseline testing. After doing an echo of their own they decided that my regurg was only mild-moderate (I don't know what numbers they were basing this on). I was also sent for an MRI to confirm that it was being caused by a bicuspid aortic valve.

Almost immediately my respiratory condition cleared up, but I consider it a blessing that my BAV was caught because of it. At this time I was having a lot of trouble deciding if I had any symptoms. My thought was, how can I know if I have more fatigue than anyone else when I have had this condition my whole life. I have nothing to compare it to! I would get little flutters lasting 1-3 seconds at least once a day, but no other symptoms that I could identify. I have always been a fairly active person, but never seemed to be able to increase stamina or lung capacity over time for cardio related activities, which always frustrated me.

When I saw my cardiologist initially, she said she guessed I would need my aortic valve replaced sometime before I was 40, but there was no indication on how quickly things would progress, which has been one of the most difficult things for me to wrap my head around. Normally you go to the doctor when you are sick, and they do something to make it better. With this condition it feels like I just have to wait around getting more and more unhealthy until it is time. So I had a follow up in November 2011, where I believe I heard something about 75%, which I believe may have been referring to pressure gradient (???) and that would keep me in the normal range. Since there was very little change we made an appointment for a years time, in December 2012.

At that appointment she said my regurgitation was now just at the severe level and my heart was slightly enlarged, but not at the point where it was of great concern. Again, I wasn't given any of the actual numbers. I also reported that the few times I had tried to do a cardio workout on the stationary bike, I was left feeling short of breath and exhausted, so much so that it ruined me for the rest of the day. She said she would like to see me in 6 months and scheduled a stress test in the meantime. Unfortunately we up and moved to Vancouver in January, and I was not able to make my stress test appointment. My cardiologist in Edmonton referred me to one here right away, but they were not able to get me in until next week.

I am pretty concerned about not having had any follow up for a full year. I have been noticing an increase in my symptoms, with palpitations lasting up to 10 seconds followed by shortness of breath, some lightheadedness and general fatigue. I have also been noticing some tightness in the center of my chest which at first I assumed was signs of a chest cold, but it has been continuing with no other signs of a virus. In hindsight, perhaps I should have pressed them to see me sooner. I will definitely be asking for my numbers so I can do my own research. The unknown is the worst part right now, but I also don't know if hearing that everything is the same and that the wait continues, or hearing that surgery is imminent would be more stressful. They both sound pretty bad.

So my question is, how did you realize you were becoming symptomatic? How bad were your symptoms when your doctor decided surgery was required?

Thanks for reading my very long first post. I appreciate any support/insight/advice etc that you are willing to provide.

 

[AZ Don]

I also don't know if hearing that everything is the same and that the wait continues, or hearing that surgery is imminent would be more stressful. They both sound pretty bad.

Welcome. I haven't had valve symptoms so can't answer your question from experience, though if your symptoms are related to your valve, surgery will probably be recommended sooner rather than later. In response to your comment above, on the one hand your problem wouldn't be so bad to need treatment now, and on the other hand they will fix it. Could be worse.

 

[big_L]

I'd suggest that you contact the facility/facilities where your testing was done and request your full medical record. I'd then look over the test results to gain a better understanding of where you are. I'd guess the 75% might be your ejection fraction. 75 is a good, normal number.

I'd also suggest that you get a second opinion. Maybe both a cardiologist and a cardiac surgeon. Maybe you shouldn't be waiting any longer? Might help to hear what someone else has to say.

With asymptomatic patients, the surgery timing is a crap shoot. No one truly knows where you are on the 'mortality curve'. Once you start seeing one or more of the classic symptoms (shortness of breath, fainting, or angina) AND the valve area is below 1 (there are other criteria), the general rule is that surgery should be scheduled.

See reference here. Especially figure 3.

 

[T in YVR]

Hi shanwow1,

Symptoms are a tricky thing....once you are diagnosed your mind can play tricks on you and you are ultra aware of everything. So you have to separate reality from fiction a bit and it can be hard to do. Symptoms can, in a way, be both very visible (short of breath, dizzy, fatigue, etc.) and less visible (enlarged left ventricle etc.). I had none of the more obvious ones you mention. If you are in fact experiencing any of these more visible symptoms, then surgery may be sooner vs. later. Once patients are clearly symptomatic they typically will operate much quicker. For me, I had severe regurg (early stages of severe) and a moderately enlarged LV (at 65mm) when they caught it - but I did not display any symptoms like fatigue etc. Had I not had an echo due to some chest tightness I would have never caught this - probably would not know to this day. But I can tell you this: once your LV starts to enlarge (<57mm is the normal range), they will typically tell you that you need to start considering surgery. The enlarged LV is a sign that your heart is now having to work harder than normal. Having said that you can go quite some time before having surgery; the measurements don't usually change overnight. My doctors recommended they operate on me sooner vs. later (and I agreed!!), but they also told me that I could likely go another 12-18 months before I started to become much more symptomatic.

The doctors told me that if a person has mild or moderate regurg, the surgeons typically will not even want to see you unless there are other factors at play. Once you are 'severe', that changes things. I was like you with early stages of severe regurg and some LV dilation (sounds like more than you).

If I were you I would:

- get a copy of all my echo/MRI results and go through them with your dr to understand them
- at some point request a CT scan of your aorta
- at some point get a TEE (this enables the doctors to see the regurg much better than an ultrasound)

You may have alot of time on this - remember that your condition won't change overnight (as my surgeon jokingly told me "this will kill you slowly; it won't kill you quickly"...

By the way, I am located in Vancouver and just had my BAV replaced with an On-X mechanical valve on Oct. 1 at St. Paul's. If you have any questions about the medical system here, the hospitals, etc, just send me a message.

Tony

 

[scott.eitman]

I way fairly asymptomatic. Yes, I had SOB, but it was not that bad. Some trouble talking after climbing a couple flights of stairs, but recovered in seconds. The thing that made me think surgery was coming soon was I was tired. I could work pretty hard and long hours, but was really tired at the end of the day. On weekends I needed about 2.5 hours sleep on Sat and Sun. My Cardio at the time told me that was in my head. Every other Cardio said it was time for surgery and I trusted them.

 

[shanwow1]

Thank you for the responses. I am interested to see what this new cardiologist has to say about things, as it will be a second opinion of sorts without me really searching for a different doctor. I will be asking her to walk me through the results, and asking for copies as well. I do feel armed with more information this time around, mostly due to reading the forums on this site. It sounds like symptoms like shortness of breath are such a hard thing to measure, and yet there is a lot of weight given to them when considering if it is time for surgery. I also appreciate hearing your opinions that I might be looking at surgery sooner rather than later. Without being pessimistic, I am one of these people that likes to be prepared for the worst case scenario. I find that although I have a lot of people in my life supporting me, they don't really want to hear that I think my symptoms are increasing and that just based on how I feel and from my research I am expecting to hear that I need surgery in the next few years. I think they are more in denial about it than I am.

 

[Jayhawk]

I am scheduled for AVR and Root repair on December 10th. For me symptoms have come on gradually so they are almost unnoticeable when they happen. I can report I am really tired (physically and sleepy) a lot of the time. Going up a flight of stairs can leave me winded for a few minutes too. I do feel that the circulation to my legs is not as good anymore as my legs get the "feel the burn" feeling pretty soon after walking 2 blocks or so. The tipper for me to have surgery was when we did a stress test. My heart rate went up like its supposed to but my blood pressure went down. Didnt even get to finish the stress test. Looking back before this I tried to do some exercise on the Wii. Went upstairs and laid down for a few minutes then decided to get up and almost passed out. Hope this helps.