Waiting for AV replacement. Any telltale signs or symptoms?

[bgilbert]

Hey all,
I'm in the six-month ECHO test cycles. Six months ago after my TEE I was told I have moderate to severe BAV with some stenosis and they estimated I would need the AV replaced in a year or year and a half.. As I wait, I feel like I have less energy these days, but it's hard to qualify this - maybe its just in my head.. So I am curious to hear from those who've gone through this if there were any signs or symptoms when it was truly time. Of course there are many different types of heart issues and all don't manifest themselves in the same way, so I am interested in hearing from those who did have a change in symptoms. Thanks!

 

[sood]

Hi. Chest pains and very poor circulation that would cause my hands to easily numb when I was taking a brief nap were common for me in the months leading to avr. The circulation problems had been going on for years but they weren't sure it was related, but now that that is gone post op I'm sure it was related.

 

[missaviator]

Honestly, I am going in Tuesday for my 2nd OHS and I feel pretty darn good. The only symptom I notice is after exerting myself, walking up stairs etc..I feel more winded than normal.
Our bodies are pretty amazing at "survival."

My first OHS I was pretty fatigued a few months prior, but still went Christmas shopping all day the day prior to emergency OHS...

Whether you choose to wait until you feel symptoms or not, you will feel 100% better afterwards, honestly you won't even believe how much better you feel. Obviously not including the whole recovering from the actual cracked sternum etc...lol

 

[SuzanneSLO]

I am talking to the Surgeon next week about the replacement of my BAV. My last echo showed that I went from moderate regurgitation to severe with mild stenosis and my heart is slightly enlarged. My recent CT scan showed I also have a 4.8 aortic anuerysm.

I have no symptoms except a Starbucks addiction. I often need to drink coffee in the afternoon which is something I had to give up back in my 20's.

We just got back from Disney World. I was a little worried that I would be a drag on the rest of the party, but I did just fine.

Having no symptoms makes it much easier to put up with the time it is taking to schedule the surgery. On the other hand, it will probably make it take much longer during recovery to feel that I am back to "normal."

Best of luck to you -- Suzanne

 

[kimcdougc]

If you are symptomatic, they usually will do a cath, at least that is what they did for mine. I have noticed in the last 6 months I have become more breathless. When my cardiologist did the cath, he realized I was at a point where I need to go ahead and do the surgery. The echo did not show any difference from last year to this year, but the cath is more accurate. Kim

 

[Heart Of The Sunrise]

bgilbert: I was asymptomatic and was lucky this was caught at my routine physical. An abnormal EKG was the first hint of a problem.Fact 1: You are going to need surgery. Fact 2: If you currently have no symptoms or minimal symptoms that is great. It really serves no usual purpose in my opinion to wait very long. Do your research and find the best surgeon and hospital and get it done! I found out in October 2012 that I had a BAV and severely dialated aorta. It was a timebomb waiting to explode at 4.9 CM.I could not wait to get it repaired. Stiil,it took until February 5th's appointment with my surgeon to get my date for surgery. My cath on December 4th show absolutely no CAD. I am very happy with my choice of the ON-X valve. My surgeon was fabulous and the hospital was great. I am doing great at 55 days post-op. I return to work on June 3rd.

 

[big_L]

One cardiologist told me to wait until I was symptomatic. Which is fine, except we don't know the extent that we may be compensating. Even factoring in age, how much can we not do that we should be able to? The second cardiologist tells me to do it soon. I'm leaning sooner, personally. Getting over denial is still a challenge.

Good luck.

 

[epstns]

The only time I would (and did) wait is if you are on the border of the age group for whom one type of valve or another is appropriate. I waited until I was 63 for my valve in order to be fairly confident that a tissue valve would last a long time - perhaps the remainder of my life. Had I been much younger, at an age where they do not recommend tissue valves for men, then I would have opted for surgery sooner. The fact that I had only minor symptoms (I got tired easily) and was still exercising 5 days a week made it easier to wait. Had I experienced any of the "cardinal" symptoms (shortness of breath, fainting or chest pain), I would have gone in sooner, too.

 

[tom in MO]

I had no symptoms until about a month after they told me I needed surgery within 6 months. I felt very faint in church for about 60 seconds and almost hit the floor. That was my only "sypmtom" I admitted to.

When they took out the valve, the surgeon said it was severely deteriorated with not much viability left.

However, after surgery, once I got back on track, about 8 weeks later, I noticed that I had much more energy walking around my hilly neighborhood than I did before. I also did not need that dose of caffiene after dinner to stay up past the nightly news. I only thought I was asymptomatic. I was kidding myself.

Your loss of energy is probably not "in your head" but "in your heart."

 

[epstns]

Tom has put it pretty simply. In my case, I told my cardio that I was tired of being tired.

 

[T in YVR]

I posted a link to an article from the Cleveland Clinic in the Resources section of this site discussing surgery timing and it discusses symptoms quite extensively. You should have a read - its very good. For AVR, there are several scenarios it outlines. Frankly, as far as I am concerned, once you hit a point where your situation is not a question of "if" but "when", and if that timeframe is somewhere in the next 12 months or so when they would expect you to need surgery, then I'd push to get it done ASAP. I am asymptomatic, but have severe regurg and left ventricle with moderate dilation. My valve is "functionally bicuspid" (i.e. 2 cusps calcified and acting like a bicuspid valve). My Cardiologist told me: "they will operate on you before you show symptoms" and that is what I am hoping/pushing for. Once you start to show symptoms, things can get slightly more complicated from what I understand (and this article references that)...I'd like to go into my surgery strong and fit and mentally/physically ready - and not weak, tired, with chest pains, etc. And really - if you're talking about surgery now vs. 12 months from now, I'd just get it done. In the grand scheme of things, better too soon than too late. But everyone's situation can be very different. If you had a mild condition with minimal regurg or minimal stenosis etc. then sure, you likely monitor for quite some time. I'm trying to be my own best advocate and pushing the doctors/medical system to proactively handle my situation and not get caught having to be rushed into the ER with symptoms - no thanks.

The link to the article I mentioned seems like it might be broken. Here it is again: if this does not open, just Google the following: "Valvular Disease: When is it Time to Operate?"

http://www.sjhg.org/wp-content/uploads/2012/10/whentodosurginvalvularheartdisease6-04.pdf

Tony

 

[missaviator]

Great article tony thank you!!!

 

[dpalz]

My symptoms came on so slowly, I though I was just "getting old" and having a midlife crises. The BAV was depleting my energy while I believe the aneurysm was causing severe fatigue. I was tired all the time but could not sleep! So here now almost 8 months post surgery and I feel like a kid again. I was also have several heart palpitations which I thought was due to stress. I haven't had one, that I have noticed at least, since the surgery. Hope I never feel that way again!

 

[Heather Anne]

Such an interesting thread! Like many of you, I thought I was asymptomatic when I was told in April that my stenosis was "critical." I was exercising five days a week, had no shortness of breath, fainting, or chest pains. My cardiologist said I probably was experiencing symptoms, but had been compensating, and that I would be amazed at how much better I would feel six months after the surgery. So, on thinking about it over the past couple of months, I've decided I have been experiencing: (1) reduced exercise tolerance over the past year that I attributed to aging and the onset of menopause, (2) increased heart palpitations, especially when I'm tired, (3) lower energy levels that I also attributed to aging/menopause, and (4) reduced circulation that caused my hands to go numb if I fell asleep with them lying on my stomach.

It's actually kind of nice to think that all of these things, that I'd put down to the aging process, will likely go away after my surgery!! Which, by the way, will be August 5. The surgeon said I could wait a year or more, but I agree with those of you who say, get it done as soon as you can reasonably fit it into your schedule.

 

[mike dab]

I have been tracking my aortic valve for the last four years, and I can tell you that being tired is the one big symptom that I have been dealing with. The other thing I notice is that I get very light headed when I get up in the morning, or after lying/sitting a long time.


My enery level has gone down as my valve has gotten worse, I'm very active and I can tell that it's affecting me.

 

[yotphix]

I was being followed with an annual echo and got apathetic about things for a few years and skipped it. One day I noticed that I became winded playing with my nieces and nephews, something which had never happened to me before. Actually, winded doesn't adequately describe it. I was exhausted after just about 15 or 20 minutes of throwing them around. I was also huffing and puffing on staircases, and felt kind of poorly when taking long vigorous walks.
I went in for an echo and, sure enough, I had more LV hypertrophy, more stenosis, and more regurgitation than 3 years prior. My cardio and I agreed to revisit things in 6 months, and at that appointment there was again noticeable deterioration. I didn't really notice worsening symptoms though, but I certainly wasn't getting more endurance despite regular exercise to try to build that. At that appointment, my cardio and surgeon recommended that we do the surgery within 6 months, to give the ventricle a fighting chance to return to normal size. (We did, and it did.) The changes in my case were somewhat subtle, and could easily have been passed off as 'aging' if I hadn't known about the valve problem already. Don't expect to have a sign drop down in front of you saying 'it's time!' because that may not happen. But your six month echoes will certainly catch it. This is not a problem that (barring infections) progresses significantly over days and weeks, but over months and years.

 

[epstns]

I'll share another "on-target" quote from my cardio on this. He said "I never have to tell my patients that it is time for surgery. They tell me when they are ready, and it is always before the point when I would have to push them." In other words, we (most of us) are ready for surgery before it becomes dangerous to wait any longer.

 

[LouLou]

I have SOB and AFIB. I know it is time but I am not ready. When I had my Mitral valve surgery I was very symptomatic. This time its for the Aortic valve.
I will be having a TEE next week and I'll see what the results are.
I am wondering why more people are not having the less invasive surgery for aortic valve replacement. It appears to not be wide spread yet but seems like a better alternative than full sternum surgery.

 

[Agian]

Not everyone is a candidate for minimally invasive surgery. However, if your surgery is only for a valve replacement it might be an option. When the surgery is more complex (e.g., ascending aorta repair, removing calcium deposits etc) then, from what I understand, MOST surgeons would prefer to have a full view and go through the middle. I'm resigned to having the whole party package, when the time comes.

 

[clay_from_nj]

Up until my AVR, I was relatively symptom-free, with meds, as far as I knew; just somewhat out of breath with exertion, etc., CHF according to the docs. From the time I woke up from surgery, I have felt REALLY great. This is despite the fact that my cardiologist says that my heart function has not increased since the surgery, and discards the surgeon's finding that my heart showed an almost immediate decrease in hypertrophy. (Cardio is a real pessimist, but that is another story. Suffice it to say that if he is not suitably impressed at my one-year) All I know is that I'm in better shape than I've been my entire life. So, you might not realize just how badly off you really are. My decision was mainly based on the docs telling me that my CHF was very bad and that the surgery was urgent ASAP. I only wish I had done it sooner.