What Were Your Symptoms?

[COfireftr]

Hi all,

I've got a BAV with insufficiency. Some measurements have it severe and others moderate to severe. There is some LVH and dilation but EF is still fine. Been followed for about 10 years and we are talking surgery in the near future. Set to do a treadmill and meet with the cardio again in Sept. From there we would start talking more specific dates. He just wants me to notify him sooner if I have any symptoms. Of course that's always followed up with, "like shortness of breath". Really haven't had SOB but maybe some vague symptoms that I'm wondering if they are symptoms at all or me just getting old and not being quite as fit as before.

My running miles and pace have gone way down. I also feel mildly lightheaded occasionally. Have more mild palpitations then ever and can't fall asleep on my left side because of the hyper awareness of my heartbeat. I usually get through work fine but sometimes feel extra trashed after a 24 hour shift. I'm a firefighter and we had a decent fire the other day where it was above average physical and emotional workload, but nothing out of the norm. Felt fine throughout while the adrenaline was pumping. Vital signs were fine after; just the normal extra wide pulse pressure. When I got home the next day I was worthless. No SOB but just fatigued and extra drained. Chest felt "heavy" but no pain. Took about 2 days to feel "normal".

What symptoms, if any, did some of you have? Anyone have vague symptoms that you weren't sure of? After surgery did you realize they were or weren't "actual" symptoms?

Is this something I should make my cardio aware of?

I saw there was a recent post regarding AVR with no symptoms, so apologize for any redundancy. Its just been a battle with my own mind over the last couple of years trying to decide what a symptom really is. Being a Paramedic myself probably doesn't help either since i've got just a little medical knowledge. Also makes me kind of cynical, so internally i'm constantly telling myself its all in my head.

Thanks!
Eric

 

[Paleowoman]

Hi Eric - I didn't have any symptoms prior to surgery, I was very fit, and post surgery I knew that I it was true that I had had no symptoms. From what I was told, if you feel dizzy or very light headed they are serious symptoms, or palpitations, but not anxiety palpitations which could be tricky to work out given the situation ! Do you check your blood pressure ? Changes in that could be a symptom if they are very different from your normal readings.

 

[dornole]

As a matter of fact I just went to the doc this week with vague symptoms of SOB and palpitations and fatigue that caused me to have an echo and then a stress echo, and 4 days later I feel great and it was probably just the last lingering effects of a four-week respiratory thing, plus anxiety that I might be "having symptoms."
:Face-Embarrassed:
In contrast, 15 years ago when I first found out about my mitral valve issue, I was having to sleep upright in a chair, unable to go up a flight of stairs without resting part way and went to the urgent care after eight weeks of this to say "I'm coughing up blood a little" (as in quarter-sized hocks of bright red blood). Straight to the hospital and admitted with congestive heart failure and pulmonary edema. (FYI I have mitral issues which can produce this sort of thing, I don't know if aortic does).

It would be nice to be somewhere in between. It really is a weird dance trying to figure out what "symptoms" are sometimes and the mental piece of it, either too worried or too "brave." I understand what you're saying.

 

[Juli]

I think our heart has a great capability to compensate which is also part of the problem as it damages itself. I did a 30 mile bike ride the day before surgery - and the same ride 6 weeks later post surgery. I did not feel bad before surgery but could tell that I was doing immediately better post surgery and maybe 5-10% faster. So not dramatic but still noticeable. My doctor gave me a six months window and it seems you have a similar option. I would recommend that you pick a time for surgery and recovery that works best for you. I had my surgery end of July 2016 which allowed me to start 1-2h walks in the summer weather a few days post surgery which worked great for me.

 

[COfireftr]

Do you check your blood pressure ? Changes in that could be a symptom if they are very different from your normal readings.

Yes. BP has been fairly stable during normal activity. However, with heavy activity like fighting fire and working out it fluctuates quite a bit and doesn't recover as fast as it used to. Its still working really hard to compensate for the leak. I think it very well could be the culprit. Thanks for responding!

 

[COfireftr]

As a matter of fact I just went to the doc this week with vague symptoms of SOB and palpitations and fatigue that caused me to have an echo and then a stress echo, and 4 days later I feel great and it was probably just the last lingering effects of a four-week respiratory thing, plus anxiety that I might be "having symptoms."
:Face-Embarrassed:
In contrast, 15 years ago when I first found out about my mitral valve issue, I was having to sleep upright in a chair, unable to go up a flight of stairs without resting part way and went to the urgent care after eight weeks of this to say "I'm coughing up blood a little" (as in quarter-sized hocks of bright red blood). Straight to the hospital and admitted with congestive heart failure and pulmonary edema. (FYI I have mitral issues which can produce this sort of thing, I don't know if aortic does).

It would be nice to be somewhere in between. It really is a weird dance trying to figure out what "symptoms" are sometimes and the mental piece of it, either too worried or too "brave." I understand what you're saying.

Wow! Those are some symptoms! Did your CHF reverse itself and heart regain normal function?I would prefer to take care of things before I go in to full on heart failure. It really is a "dance" between figuring out when one is symptomatic. Also a dance figuring out when just the right time is for surgery. Don't want to go too soon but definitely don't want to wait too long. My preference is to have some control over the situation and just get the dang thing fixed while I still have the ability to choose and plan. Thanks for your reply!

 

[COfireftr]

I think our heart has a great capability to compensate which is also part of the problem as it damages itself. I did a 30 mile bike ride the day before surgery - and the same ride 6 weeks later post surgery. I did not feel bad before surgery but could tell that I was doing immediately better post surgery and maybe 5-10% faster. So not dramatic but still noticeable. My doctor gave me a six months window and it seems you have a similar option. I would recommend that you pick a time for surgery and recovery that works best for you. I had my surgery end of July 2016 which allowed me to start 1-2h walks in the summer weather a few days post surgery which worked great for me.

I totally agree about the hearts ability to compensate. I think even over compensate, which may be causing some of my vague symptoms, like fatigue and weird chest sensations during recovery. I also agree with you about picking a time that works for me. It's inevitable that it needs to be fixed. Waiting until I have pulmonary edema may not be the best plan. I think my cardio would be fine kicking the can down the road a little longer if that's what I wanted to do, but is also good to have it fixed sooner than later. I just get a little nervous in my job that I will have "real" symptoms at a bad time. Thanks for responding!

 

[Juli]

I totally agree about the hearts ability to compensate. I think even over compensate, which may be causing some of my vague symptoms, like fatigue and weird chest sensations during recovery. I also agree with you about picking a time that works for me. It's inevitable that it needs to be fixed. Waiting until I have pulmonary edema may not be the best plan. I think my cardio would be fine kicking the can down the road a little longer if that's what I wanted to do, but is also good to have it fixed sooner than later. I just get a little nervous in my job that I will have "real" symptoms at a bad time. Thanks for responding!

Listening to you it sounds that you are ready - go for it. It has to be done and - based on my experience - you will feel better and will be in top shape again.

 

[dornole]

My symptoms were relieved by a) having a c-section at 27 weeks to deliver twins (it was the pregnancy and all the extra blood volume that caused the heart failure and revealed the valve defect), b) ICU care including a ton of lasix and finally c) having a repair, luckily for me this was able to be done via balloon so very little recovery. And has lasted 15 years so far. No irreversable damage to the heart from this episode.

It was a weird situation from a dx standpoint. The pregnancy masked some of the symptoms. I mean, you certainly can get tired, short of breath, swollen legs from that as well as from CHF. Since I had zero idea there was anything wrong with my heart, and didn't have a doctor apart from my OB-GYN, it got missed until a late stage - I think I said all the right things but not to the right doctor. I got an inhaler for my symptoms . . . I went to the local urgent care finally and the guy there sent me straight to the hospital for an echo and they admitted me - within 24 hours I was getting taken via ambulance to a different hospital and doing the delivery with a full cardiology team. Nuts. So maybe I was a little hair-trigger this last time. Still trying to work it out in my head.

 

[Dodger Fan]

I wouldn't wait too long. I don't think I had really obvious symptoms. They sneak up on you gradually and you don't really notice. My cardio talked me out of surgery in April 2015. In October 2015, I got the feeling he was going to do it again, but I was more assertive. He took a second look at my echo and recommended meeting with a surgeon. The surgeon told me that he had mapped out from my echoes over time the thickening of my heart. He said I shouldn't wait more than 4 months. I had surgery in January of 2016. The surgeon said that I had a "drop dead valve". He said that the opening was the size of an eraser head and that it was so calcified he couldn't manipulate the valve with tools. I didn't feel like it was an emergency, but it sort of was. I am a police officer and I was 38 at the time of surgery.

 

[alpha 1]

So dodger fan, did the heart block come from waiting too long or is it just from any surgery that it can just happen. Just trying to find out as much as I can. A few others on here got pacemakers after ohs. So I'm assuming that it can just happen with anything. Did you have any type of bundle branch block before surgery. I have right bundle branch block. I read where it interferes with tavr. Just wandering. Thx

 

[alpha 1]

So dodger fan, did the heart block come from waiting too long or is it just from any surgery that it can just happen. Just trying to find out as much as I can. A few others on here got pacemakers after ohs. So I'm assuming that it can just happen with anything. Did you have any type of bundle branch block before surgery. I have right bundle branch block. I read where it interferes with tavr. Just wandering. Thx

 

[Chet_]

COFirefighter,
I had some similar symptoms as you. I couldn't sleeping on my left side and running pace was getting very slow. I was noticing a lot of fatigue at the end of the day also. I just couldn't stay awake after 9:30 PM. I'm 34 and I'd been tracking my BAV for ~5 years. Once it got to severe regurgitation I decided to have it fixed. I could still jog a few miles, walk up stairs, etc.

5 months out and I'm really glad I had the procedure done. Energy level has really increased. I get some soreness in my sternum if I try to sleep on my side - hopefully that will change in the coming months.

 

[Dodger Fan]

So dodger fan, did the heart block come from waiting too long or is it just from any surgery that it can just happen. Just trying to find out as much as I can. A few others on here got pacemakers after ohs. So I'm assuming that it can just happen with anything. Did you have any type of bundle branch block before surgery. I have right bundle branch block. I read where it interferes with tavr. Just wandering. Thx

I had never been diagnosed with heart block before but I did have a resting heart rate of 54 prior to surgery, so I assume I had less severe heart block before. From what I understand, the AV pathway is right next to the valve and if they have to cut a lot of calcified tissue out, they can cut the pathway. So, I am not really sure if waiting too long was a factor.

 

[Dodger Fan]

5 months out and I'm really glad I had the procedure done. Energy level has really increased. I get some soreness in my sternum if I try to sleep on my side - hopefully that will change in the coming months.

It will. Everyone's different. I started feeling normal within the last couple of months.

 

[COfireftr]

MSo maybe I was a little hair-trigger this last time. Still trying to work it out in my head.

Wow! Totally understandable why you would be aware of everything your body is telling you.

 

[COfireftr]

I wouldn't wait too long. I don't think I had really obvious symptoms. They sneak up on you gradually and you don't really notice. My cardio talked me out of surgery in April 2015. In October 2015, I got the feeling he was going to do it again, but I was more assertive. He took a second look at my echo and recommended meeting with a surgeon. The surgeon told me that he had mapped out from my echoes over time the thickening of my heart. He said I shouldn't wait more than 4 months. I had surgery in January of 2016. The surgeon said that I had a "drop dead valve". He said that the opening was the size of an eraser head and that it was so calcified he couldn't manipulate the valve with tools. I didn't feel like it was an emergency, but it sort of was. I am a police officer and I was 38 at the time of surgery.

I'm glad you pushed the issue and are feeling better. I find myself going back and forth on whether to just get it fixed or wait as long as I can. I feel like my cardio would support waiting a little longer but the fact he had me meet with a surgeon tells me he is ready whenever I am. My situation is definitely not as severe as yours. Mine is just regurgitation and the hypertrophy and chamber size are still not out of control so hopefully all still reversible.

Are you still on the line as a police officer? If so, how was your return to work? Any issues with Coumadin and a pacemaker?

 

[COfireftr]

COFirefighter,
I had some similar symptoms as you. I couldn't sleeping on my left side and running pace was getting very slow. I was noticing a lot of fatigue at the end of the day also. I just couldn't stay awake after 9:30 PM. I'm 34 and I'd been tracking my BAV for ~5 years. Once it got to severe regurgitation I decided to have it fixed. I could still jog a few miles, walk up stairs, etc.

5 months out and I'm really glad I had the procedure done. Energy level has really increased. I get some soreness in my sternum if I try to sleep on my side - hopefully that will change in the coming months.

Thanks for responding. Sounds very similar. It's great to hear that you're feeling better! I really don't feel bad, but something feels a little off. As we all know the mind is powerful and I constantly find myself questioning every last weird feeling. It doesn't freak me out or slow me down. I still live my life the same as before the diagnosis (maybe even push it more cause it's like I have something to prove) but the annoying awareness is always there.

Did you have other markers besides the severe regurg? Any LVH or chamber enlargement?

 

[Chet_]

Did you have other markers besides the severe regurg? Any LVH or chamber enlargement?

Yes the left ventricle was slightly enlarged

 

[Eva]

Hi Eric,
I used to *sigh*a lot thinking I was stressed! It was, actually, out of breathlessness! Going up or down the stairs tired me, still thinking it was in my head. My fatigue was increasing even during resting all day! I felt like this for two years before my surgeon said it was time for surgery. Too bad that he was watching numbers on the echo instead of listening seriously to my symptoms and complaints.

Keep us posted. Good luck.