Aortic valve regurgitation and anxiety - how to manage?

[mrfox]

Hello everyone,

I've been watching the forums here and reading with interest. Thanks all for your participation.

I'm a 31 year old man, diagnosed with BAV 1.5 years ago. At the time I had an echo which came back with mild/moderate regurgitation and I was essentially cleared to live life as normal and monitor, expected not to need intervention for 20 years or more.

I also experience chronic anxiety so it took me a while to adjust to this news! At that time I felt light headed or dizzy often and as though walking up stairs was a huge challenge. I would feel breathless both at rest and while exercising.

Eventually I built myself back up to 5x a week at the gym doing cardio and what felt like a relatively full life. Towards the end of last year I started to experience some odd sensations while exercising including more frequent palpitations or ectopic beats. I had another echo done with a new cardiologist in January. This revealed a different picture - regurgitation which was right on the borderline between moderate and severe as well as mild stenosis - and the new prognosis was intervention likely within 2 years, perhaps less, and 6 months echo scans. My stress echo showed my response to exertion was very good.

Since then, my anxiety has been debilitating. I also experience a whole plethora of symptoms ranging from light headedness/dizziness/pre-syncope to breathlessness even when exerting very mildly. The latest thing bothering me is palpitations which feel different from the usual ectopic beats - which last for longer (10+ seconds instead of the usual single beat) and come along with chaotic beats in between the standard ectopic lurches. My blood pressure has also recently risen significantly (160/90 now) and my cardiologist is considering ACE inhibitors.

I am currently terrified on a day to day basis. I'm afraid to exert myself for fear of some kind of life threatening arrhythmia or an aortic dissection. Naturally this is leaving me depressed and isolated as well as causing significant problems at work. I still try to walk in and out of work (6 miles total) but the depression means sometimes I spend whole days in bed.

I don't know what I'm looking for really. Some sense of solidarity probably as opposed to any reassurance - which I appreciate none of you can really offer me! I'm finding it such a challenge having any kind of quality of life with this diagnosis, and I have to figure out how to live in between this point and whenever my surgery may be.

How do you all deal with this period?

 

[pellicle]

Hi

try to just remember that many (most) of us here had little or no problem. So when you're worried about it try thinking that in the future, after your surgery, its like that arsehole who cut you off in traffic 6 months ago ... you know ... the one you totally can't remember ...

it'll be fine.

 

[dick0236]

How do you all deal with this period?

I can no longer remember how I felt when the surgery was done when I was 31......but I am sure that I went through a lot of "what ifs".....none of which happened. Stay in contact with your cardio and when the time comes have corrective surgery.....and if you are like most of us, you will enjoy a very normal life afterwords. For now, you might want to talk to someone about your feelings and fears......and remember that OHS has become one of the most performed surgeries worldwide......but it still scares those about to go thru it.

 

[NDNMD]

I can no longer remember how I felt when the surgery was done when I was 31......but I am sure that I went through a lot of "what ifs".....none of which happened. Stay in contact with your cardio and when the time comes have corrective surgery.....and if you are like most of us, you will enjoy a very normal life afterwords. For now, you might want to talk to someone about your feelings and fears......and remember that OHS has become one of the most performed surgeries worldwide......but it still scares those about to go thru it.

I am much more scared of the recovery--specifically nutritional conflicts--and stroke risk than I am of the surgery itself.

 

[mrfox]

Thanks for the replies!

Weirdly, though I am scared of the surgery, I'm far more scared of keeling over BEFORE the surgery at this stage. I have been told this is unlikely by my cardiologist but nonetheless that's my fear.

 

[Paleowoman]

Hi mrfox - you might find it useful to get some antianxiety medication from your GP to help you on occasion when your feelings of fear are particularly bad - this is something your GP should understand.

 

[dick0236]

I am much more scared of the recovery--specifically nutritional conflicts--and stroke risk than I am of the surgery itself.

--specifically nutritional conflicts? Personally I have never subscribed to the vit K nonsense. I continue to eat a normal diet that includes frequent vit K foods.....as we say, "dose the diet, don't diet the dose"

--stroke risk? Strokes happen to anyone, with or without artificial heart valves. With the modern system of home monitoring to maintain a prescribed INR and using a little common sense the risk of stroke is, very much, minimized. I had my one and only stroke 40+ years ago and it was 99% due to my ignorance of warfarin. Today, with all the info available plus testing convenience and frequency, the risk of stroke is not nearly what it used to be......and probably not much more than the normal risk.

 

[ottagal]

Mrfox,
I feel for you. When I first heard surgery within 6 months to 2 years I was terrified. I had the same worries as you about "making it to surgery". Well, guess what? I did and here I am 8 years later. Just look at all the folks here who came here before surgery and are now posting..some like Dick 40 plus years later. Hang in there..I found yoga a Godsend. Hang in...keep active and keep coming here...You will get through it.

 

[Zoltania]

That level of anxiety doesn't seem to be the kind of thing you can reason your way out of with positive thinking. As mentioned above, anti-anxiety medication from a doctor could help. And you could look into therapy (especially cognitive-behavioral therapy).

A meditation class could also be helpful, as could exercise, and there are a number of self-help books on dealing with anxiety too. But if your mind is running away to focus on the worst-case scenarios to the point where you are having trouble functioning, getting some help from outside seems like it would really be worthwhile.

 

[d333gs]

MR FOX , sounds like we are in the same boat, I did not have any unusual symptoms for someone who exercised hard, and I was blindsided when I was told about the same thing as you: leaky A valve and a 37 mmHg. Now I imagine all sorts of symptoms and I gave up weights, tennis and running up the stairs..........guess who is going to get out of shape fast! I have no worries about the operation ........It is the recovery time that bothers me : best to plan on 6 months. My next checkup is in Sept. If this has to be done , the sooner the better. I want to get back on the court!
John

 

[d333gs]

double post , can't delete

 

[pellicle]

........It is the recovery time that bothers me : best to plan on 6 months.

Unless you are an extraordinarily fragile elderly person I disagree strongly.

I was riding my (kick start) motorcycle to classes at three months (I was at uni doing my second degree at 28years old on my second surgery, I've had three now) and moving my dad (his furniture and junk) out of his apartment 3 months after my second (and back at work before that) when I was 48.

whomever gave you that idea was obviously used to geriatric patients or has a shocking surgical history (or made it up as they went along)

 

[d333gs]

Hi pellicle. Right, Sorry, says everywhere 6 to 8 weeks for the ribs to heal and be back on your feet , I was told to put aside 6 months for 100% recovery

 

[mrfox]

That level of anxiety doesn't seem to be the kind of thing you can reason your way out of with positive thinking. As mentioned above, anti-anxiety medication from a doctor could help. And you could look into therapy (especially cognitive-behavioral therapy).

A meditation class could also be helpful, as could exercise, and there are a number of self-help books on dealing with anxiety too. But if your mind is running away to focus on the worst-case scenarios to the point where you are having trouble functioning, getting some help from outside seems like it would really be worthwhile.

Thanks for the advice - yes I am seeing a psychologist. I tried some anti anxiety medication but found SSRIs intolerable with all the paradoxical anxiety and other side effects. I am using diazapam to control the worst of the anxiety right now but it is a struggle!

 

[mrfox]

Mrfox,
I feel for you. When I first heard surgery within 6 months to 2 years I was terrified. I had the same worries as you about "making it to surgery". Well, guess what? I did and here I am 8 years later. Just look at all the folks here who came here before surgery and are now posting..some like Dick 40 plus years later. Hang in there..I found yoga a Godsend. Hang in...keep active and keep coming here...You will get through it.

Thanks, that kind of thing is reassuring. Keeping active is so hard! I used to be do a lot of resistance training and big into high intensity exercise before this.. I feel I can't do that stuff now (especially the weights). I should get more into yoga. As ever the fear is about that space in the margin between severe diagnosis and intervention. I'm not in a hurry to go under the knife but find the uncertainty hard to bear.

 

[mrfox]

MR FOX , sounds like we are in the same boat, I did not have any unusual symptoms for someone who exercised hard, and I was blindsided when I was told about the same thing as you: leaky A valve and a 37 mmHg. Now I imagine all sorts of symptoms and I gave up weights, tennis and running up the stairs..........guess who is going to get out of shape fast! I have no worries about the operation ........It is the recovery time that bothers me : best to plan on 6 months. My next checkup is in Sept. If this has to be done , the sooner the better. I want to get back on the court!
John

Yes the recovery bothers me as well.. really with the operation I'm afraid of the things around it like having a breathing tube, open holes in the chest etc.

 

[Paleowoman]

Thanks for the advice - yes I am seeing a psychologist. I tried some anti anxiety medication but found SSRIs intolerable with all the paradoxical anxiety and other side effects. I am using diazapam to control the worst of the anxiety right now but it is a struggle!

SSRI's are not anti-anxiety meds but anti-depressants. Diazepam is for anxiety if it's a high enough dose. My GP prescribed me lorazepam (it's called Ativan in the US) - much better than diazepam for anxiety but the downside is that it can give the side effect of a kind of amnesia. I only took 1mg lorazepam on occasional days and found it very effective for anxiety, but you really shouldn't need to take an anti-anxiety med regualrly, just when things really get too bad so you can get a better grip on things. (Lorazepam is much more addictive than diazepam).

 

[mrfox]

I was given sertraline which is used for severe anxiety. At any rate I didn't like it at all

 

[pellicle]

Hi

Hi pellicle. Right, Sorry, says everywhere 6 to 8 weeks for the ribs to heal and be back on your feet , I was told to put aside 6 months for 100% recovery

Indeed, but , well the 6 to 8 weeks is to allow the sternum (a critical bone in the chest) not usually the ribs, to knit ... its like the keystone of your rib cage. Its essentially broken in the surgery. Many here have reported feeling totally fine at 5 weeks (and I always caution to be careful with that sternum).

So that's like under two months ... then if you are walking daily (as you should be and indeed are started walking even in ICU) by the time 8 weeks is up you'll be able to be doing well. At 12 weeks (which is less than 3 months) expect to be cycling and joging and by another 3 monts on tops that (baring any issues) you'll be pretty much back to where you were before surgery and before symptoms.

If you were to put aside 6 months that would be overkill (as I've just explained) but if you were a pro-wrestler you may not be in top form until 6 months

The primary caveat is don't do things which cause high "hydraulic" pressure on your vascular system (which means weight lifting, not cardio "spinning" type stuff). My surgeon was quite clear on urging me to do as much as I could that wasn't putting "strain" on the systems (AKA Squats or Weights). I asked what HR to limit myself to and he said what ever you like, I said what about 160 and he said if you can sustain 160 then do.

When I had my 2nd surgery I was walking up my (steep) hill better after 4 weeks post op than before it.
.
I guess it depends on how seriously you approach rehab, how fit you were before and what your mental approach to obstacles is.

Myself I was pretty darn determined to get back to classes and I was doing that in Feb (Dec 24th surgery).

Dig around here and indeed ask that exact question ... always question what your medical advice is ... it may be right or it may be generic (don't try this at home folks) sort of cautionary advice. Remember most surgeons don't deal with patients who are under 50

 

[d333gs]

Hi, "The primary caveat is don't do things which cause high "hydraulic" pressure on your vascular system (which means weight lifting, not cardio "spinning" type stuff)." During rehab or never again?
Thanks