To those with AR and LVH, what did symptoms feel like when you started getting them?

[derekj72]

Background, I am 38, last echo showed:

1) Bicuspid aortic valve with mild to moderate AR and moderately dilated aortic root. Max aortic root measurement 4.7cm by 2D and 4.9 cm by 3D. Borderline ascending aorta dilatation at 3.9cm.

2) Mild LVH with normal LV size and systolic function. Estimated EF 66% by MOD. Trace TR and MR. RVSP = 25mmHg.

I am unsure if I actually have symptoms or not, but over the last few years, I have started to feel that it's more comfortable to sleep on my right side than my left, I tend to wake up a little bit more often at night, and then I sometimes get this general feeling like something is uneasy, like I can't fully relax my chest and I am cognizant of my breathing. Also, I sometimes get this mild sensation of being a bit dizzy or lightheaded, but it passes.

I still don't really get tired, and I can do a very brisk walk on my treadmill for 45 minutes or so without feeling winded. For those of you who progresses to having symptoms before your surgery, I was wondering if any of these sound familiar.

 

[LeakyUK]

I have severe regurgitation with LVH. I have few symptoms - I can walk briskly, climb stairs etc, but I cannot run or lift heavy items without shortness of breath. My investigations started after an episode of dizzyness. I am 58 and the view is that my heart is compensating well, but is close to tipping point so surgery sooner rather than later. The worst symptom is a pounding pulse as my heart fights the faulty plumbing.

 

[themalteser]

Hi mate, I'm a bicuspid with trivial aortic regurgitation, mild root dilation of 4.4 x 3.3. I dont have LVH. I know exactly what you mean by you can't relax your chest, but I doubt it's got anything to do with our condition, as currently it's only mild. I can't sleep on my left, feeling my heart beat, and a weird sensation over my chest starts which gets me bit panicky. I asked cardiologist about all these, but said that they are not symptoms I should be concerned about. I've been told that anxiety is the cause, and I believe it's true, because when I relax, I'm fine, no problems.

But, it's bloody annoying !

 

[themalteser]

Oh, I started gym aswell, I'm running, rowing, lifting light repetitive weights to tone, and I'm absolutely fine, chest feels ok, heart pumps at round 150 bpm, so must be anxiety that only when sitting down I feel all these sensations.

How about you? Do you do any exercise?

 

[derekj72]

I exercise only every once in awhile on a treadmill and with hills (on the treadmill). I don't let my heart go above 120bpm.

The symptoms of not being able to relax the chest is difficult to describe and definitely sounds psychosomatic, but your description matches too what I am feeling.

I have found that if I have a chair massage at my local mall, that it does indeed relax me to the point where my chest feels fine. This points to anxiety, although I rarely every feel anxious per se.

 

[themalteser]

I know it's easy to blame it to anxiety, especially as it's such a vague word, and unfortunately it's used in every day language, which really undermines it, but, pure anxiety is awful, the sensations that are weird and annoying, cant take deep breath, sweaty palms, feel heartbeat when lying on left side, chest sensations, like pressure feeling, etc etc

The fact that, you and I are aware of our heart rate during exercise , we're here posting in forum etc are all the product of anxiety so many many people have our condition and either don't know and live a normal life, or just accept it and live a normal life, after all, it's only a minor defect which eventually can be fixed.

I still encourage you to speak with your cardiologist, as he is the expert, but, most likely he will say that it's nothing related!

 

[Jason]

I am 36, and had a bicuspid valve until March 7th. My valve was moderately stenotic and the leaflets were starting to calcify, but not bad enough to force surgery. I did have LVH due to the stenotic valve, and my EF was similar to yours at 66-67%. My aortic root is mildly dilated, but in the past year my ascending aorta had dilated from 4.5cm to 5.4 cm, so I had to have a surgery. I had the aortic valve replaced with a carbomedics 25mm valve, the aortic root was spared, and the ascending aortic aneurysm was replaced with a dacron graft.

As far as symptoms, I had none. I felt fine, had been exercising more and more in the past year and a half, and had no shortness of breath, dizzyness, etc. My heart was compensating for the deficiency by thickening the wall of the LV, and my ejection fraction was still good. However, with the aneurysm growing I was at risk of disection, so I went under the knife. I did have mild AR, but not very much up to the time of surgery.

Has your cardio told you at what point the aortic root will require surgery? My root is mildly dilated, but the surgeon spared it. The rationale was that with a new valve and graft following the root the dilation should stop. For the ascending aorta, my surgeon told me that in my case 5 cm was the guideline she was looking at, but also that it is dependent by person. We didn't really talk about the root, however.

I have had anxiety in the past, not related to the heart stuff this time around, and I feel for you if that is it. It was amazing to me that my brain could cause physical responses! I wish you well, and would like to hear what your cardio has to say.

 

[derekj72]

My cardiologist said last year that I am borderline now, but that 5.0cm will be where they recommend it. He also said that if I were having significant anxieties we could talk about surgery sooner. (My office visit this year is in a few weeks so we will see what he says, although my echo showed no changes from last year).

In all, I am going to listen to my cardiologist, and if my aortic root aneurysm remains stable then err on the side of not having surgery, as long as my LVH doesn't progress to a point where irreversible damage is done to my left ventricle.

one other symptom I forgot to mention is that sometimes I have a sharp, stabbing pain coming from my left ribcage, sort of like a sharp twinge. I get it maybe once a month, it's not in the area of my aorta, and my wife who is an RN seems to think it is just pleuritic pain. I'll mentino this to my cardiologist next month. I really don't FEEL anxious per se, but I recognize that one can be suffering from anxiety without feeling anxious, as paradoxical as that sounds.

Jason, how did your recovery go? Would you have been able to return to an office job in 4 weeks? That is what I am hoping for in my case.

-Derek

 

[ALCapshaw2]

The usual / standard recommendation for returning to Non-Physically Demanding Jobs is 6 weeks if there are NO complications. Any complications or 'bumps in the road to recovery' will add to that number. Even with a normal recovery, you will almost assuredly tire easily. Some members have started with part-time work for a week or two before going back to full time. A very few members have returned to work at 4 weeks. Most members report that they continue to improve their capability / exercise capacity for several months following surgery.

'AL Capshaw'

 

[Jason]

I am coming up on six weeks after surgery on Monday, and I still don't feel like returning to work, especially not full time. I know everyone is different, but for me I couldn't have gone back after 4 weeks. I had atrial flutter in the third week and was readmitted to the hospital, and coming out of that my prescriptions were all changed up and my anxiety was fairly high. I think that this may have pushed my recovery out a bit as well.

Monday I meet with my surgeon and cardio, and one of the questions to answer at that time is when I can return to work. If I have a say in it, I am going to push for a few more weeks out, or start back at partial days at the most. I just tire out to easy to be at work in my role, and that is without the stress of the job on top of recovery. My typical day starts out very good, with a lot of energy. I have cardiac rehab or go to the Y in the morning, exercising and in transit until around lunch time. After lunch, though, I tend to get pretty sleepy. For the first three weeks or so I was taking naps in the middle of the day to afternoon, and I have never been a person to nap even when I was a kid. I now go without the naps, but there is still a lag in the afternoon where I am not as mentally alert. By 7:30 or 8 PM I am dragging pretty good, and then we go to bed around 9:30 or 10 PM. I am still having a slightly difficult time sleeping, as either my mind doesn't shut off or the clicking (mechanical valve) will catch my attention just as I am drifting off and wake me up again. This is getting a lot better in the last two weeks, but I would still say I am not getting a full night's sleep. I have been taking Ambien CR since the surgery, and that helps out too.

I thought when I went in for the surgery that I would be the superstar who came through in 3-4 weeks and was back at work. The reality is that this is a significant surgery that takes a toll on your body. Additionally, some of the drugs that you might end up on tend to sap your energy. For me, metoprolol seems to drag me down a bit. I think you will be best served taking your time to get back to work if you do have the surgery, as you want to make sure you are ready in order to give yourself the best recovery possible.

 

[Sara C]

Hi Derek,
I'll be in your neighborhood next week for my AVR surgery. I want to post this to share my symptoms before I can't recall what brought me to this point! I found out about my BAV about 20 years ago. When I was mountain biking and beating my friends up the mountain, or skiing and beating them down the mountain, I wondered about my BAV diagnosis and how much it really was slowing me down. While I wasn't really winning any races, I felt I had pretty good cardio capacity.
Then about 3 years ago, at age 44, I began getting short of breath after a moderate amount of exertion. My regurg status also went from "mild to moderate" to "moderate to severe". My Cardio at the time jumped the gun a little and told me to go find a surgeon. My husband and I researched some surgeons and the three we visited all said it isn't time for AVR yet. At that time, I had a little "heaviness" in the chest and began getting fatigued after moderate exertion or long days at work. My workouts at the gym were mostly uneventful; I could run on the treadmill without problems. During hikes to higher altitude (over 6500 feet) I would get sometimes dizzy and feel I needed to limit the length of hikes and "take it easier".
Fast forward to this month...we went on a trip to sea level (we live at about 6500 feet) and my feet got swollen during the plane trip. Not only that, they stayed puffy for a day or two after arrival; plus I felt a bit too tired although easy to explain away (overnight flight, age, not enough water, etc.). After we got back from the trip, I went back to work and felt very tired. This feeling lasted three or four days. Again, it was a little "easy" to explain away (back to work the next day, back to altitude, dehydration) but then I got some chest pressure too. The chest pressure made me seek out an echo which showed my regurg and aortic dilation had increased since November 2010; a tipping point in my condition. For me, it was problems related to travel that verified it was time to get my valve replaced.
I am scheduled for surgery with Dr Gaudiani on 4/29. He was one of the surgeons we met with in 2008 who said it wasn't time three years ago. I hope this helps you or others that are wondering what they should be aware of after being told they may need AVR "sometime".
Warmly,
Sara