1000 questions and other ramblings

[newbud]

Hi all, first time post long time lurker on these pages. My name is wade 32 been diagnosed with bicuspid Aortic alve, regurg and stenosiswent from mild to moderate last June..... Been told no stressful sports as i was getting symtpoms whilst playing top level squash....that was 2 yrs ago. Then during day light headed etc..... They put it down to dehydration as I live in very hot climate.
Had co-oration of the aorta at age of 20 stent implanted aorta narrowed to 1.6mm was lucky it was picked up. First symptom is normally sudden death with that one.

The questions I want answered that I have not got a definitiven answer so far are
Lack of energy, is it in our head because it is so gradual? I have days when I feel like sleeping till lunch and the next can stay up watching movies till 11pm?

I know something is wrong with my body, slight niggles in the chest area, the obvious energy levels
And the biggest my mind!!!!! Does it play tricks with you and freak you out, wonder if you shouldn't go for that bike ride, jogging etc...... My doctor put me on Valium for a month when I got the news I was a bit stressed. That has passed

My local doc has told me dont rush surgery I could have inr probs, probs with complications etc.
Is he saying that so being in limbo isn't so bad or is there cause for genuine continuation that this Codition may plague us for the rest of our lives and limit us. I have two young boys 3yrs and 7mnths and it
Confuses the heck out of me and frustrates me

My biggest question after valve replacement do you notice a difference in your being if that makes sense?
Like when you wake the days and weeks after vr your body is getting more efficient, don't feel so doughy
More breathe in the lungs etc......
I really hope that after surgery will be a noticeable difference with my body. I know something is wrong but cause this is so gradual I now after years of it deteriorating do not know what my normal state of being is
And it is starting to get me worried I'll never get it back.
Pphhhewwwwww. I've been wanting to write for a while, think if I refrain it's happening to someone else and not me.....
Thanks to everyone for the work that goes on here, I find a lot of reassurance that we aren't alone.

God bless.

 

[Jason2012]

If you have been diagnosed with BAV, it's not in your head. Even when I am not symptomatic (I have periods, sometimes days with few symptoms), I still get more tired than "the next guy" of similar age/physical activity level/etc.

I'll try to leave a better response later, getting ready to head to bed. I was only diagnosed with BAV recently -- since 2008 no one was able to see it (this is kind of ridiculous given I had all hallmark symptoms, have had a trans-esophageal echo where it wasn't noticed, had many standard echoes where it was not noticed). Anyways, I've limited my activity and listened to my body since then. I know when to slow down and recover... you learn to live within your limitations pretty quick I guess as few want to test their luck (for me, I didn't want to risk a repeat of a heart event I had in 2008 (you don't have to worry about that though, it was a very rare thing) or wear out various parts of my heart). My point is just that, yes, like you, I have not "gone on that bike ride" more than once. Honestly, biking didn't seem to bother me much as the position was comfortable for me. Trying to run a marathon would have probably killed me though, heh. I made up my mind at some point that intense cardio-level activity just isn't good for some people with conditions like this.

Because my aortic regurgitation gets very bad only with activity and psuedo-randomly (not as common as constant leaking), my last cardiologist straight up told me that it was "in my head" (what a jerk). So don't feel bad about having some confusion.

Note that these comments are my personal, non-medical-background thoughts having lived with this for a while. Not a doctor -- don't even play one on TV.

 

[newbud]

Jason, thanks.
Yes, mine is constant regurg just had a echo results thru next week. I don't know if
I want to look forward to surgery day or be thankful for every day I still have my
Heart in tact and not opened up yet?? One day I would love to pick my squash racquet up again and get back into
It but am unsure if that will be a reality again it is frustrating

 

[Jason2012]

Jason, thanks.
Yes, mine is constant regurg just had a echo results thru next week. I don't know if
I want to look forward to surgery day or be thankful for every day I still have my
Heart in tact and not opened up yet?? One day I would love to pick my squash racquet up again and get back into
It but am unsure if that will be a reality again it is frustrating

Hi Again Newbud,

You and I will be getting surgery to address our BAV soon. It has its inherent risks, but we have no reason to fear the outcome as there is a good chance it will be very good. The aortic regurgitation you have now will go away after valve replacement.

So while you might have to fear getting attacked with a squash racket (you might bleed twice as much as the next guy would if on blood thinner/getting mechanical valve, lol), I don't see any reason you wouldn't be able to play some squash.

 

[Mom2izzy]

1000 questions and other ramblings

My mind definitely gave me problems pre-surgery. Those "niggles" in my chest or bouts of light headedness would send me into full blown panic attacks.

I think many of the people here would disagree with the statement "being in limbo isn't so bad". It is frequently said that waiting is the hardest part.

I was only on coumadin for about 6 weeks, so I can't speak to that part directly. I will leave that to others...

My daughter was 3 when I had my surgery. I was more worried about my outcome because of her, but I also wanted the surgery because of her. I want to make sure I'm around to watch her grow up, and surgery (sooner rather than later) have me the best chances.

If you have only been speaking with a cardiologist, you may want to get a surgeon's opinion. Cardiologists seem to lean more toward the "wait and see" side, whereas I feel surgeons are more proactive. My surgery would have been much less complicated if my cardiologist had referred me to a surgeon sooner.

Best of luck!

 

[ski girl]

Hi newbud-

It sounds to me like you're having enough symptoms to warrant surgery to get this fixed. I had my BAV replaced in 2010 (and again in 2011, long story) and I can do all sorts of things now that I couldn't do before - running, smashing uphill on my bike . . . they are going to FIX your heart which means you will be BETTER and for me I was so very excited about the surgery for that reason! You should definitely be able to get back to squash at as high a level as you want.

I see you're in Broome - are you going to have the surgery in Perth?

 

[newbud]

Hi, yes I saw a cardio thoracic surgeon a year ago and after viewing my echo results his words were you'll be having surgery within a year and whoa .....i was Half relieved thinking it's all going to be sorted but thinking this must serious !!!
Then the cardiologist on my next checkup says the valve hasn't changed so put me out to yearly echos now. I have just had a six monthly off my own back to put my mind at ease (waiting for results now)!!. When I'm going to the gym light biking and weights I don't want to be stressing out I'm gunna faint or worse.
From what I gather the surgeons want to operate and the cardiologists want to keep checking on it!!!!

 

[ski girl]

Who's your surgeon?

 

[newbud]

Haven't got one. I saw Dr mark Edwards at mounts in nov 2011 but for now am just seeing cardiologists when they visit Broome every 12 months but am in perth now and just got a echo done for peace of mind this week results will be in when I'm back in Broome next week

 

[Phil]

Hi, yes I saw a cardio thoracic surgeon a year ago and after viewing my echo results his words were you'll be having surgery within a year and whoa .....i was Half relieved thinking it's all going to be sorted but thinking this must serious !!!
Then the cardiologist on my next checkup says the valve hasn't changed so put me out to yearly echos now. I have just had a six monthly off my own back to put my mind at ease (waiting for results now)!!. When I'm going to the gym light biking and weights I don't want to be stressing out I'm gunna faint or worse.
From what I gather the surgeons want to operate and the cardiologists want to keep checking on it!!!!

Hi Newbud,

I'm in the same boat as you - surgeon wants to do it, but cardiologist says 'wait'. It's very frustrating. I see my surgeon again next month and very much hope he wins the tussle - it's boring not knowing when surgery will be and I'm sick of feeling ordinary most of the time.

All the best.


Phil.

 

[epstns]

newbud,

My situation was a bit different. I was diagnosed with BAV and moderate to severe aortic stenosis when I was 52. I had only trace regurgitation, and was pretty much without symptoms. I was still running/jogging 3 miles a day, 5 days a week, and lifting weights (lighter weights, high reps). I was told that I would need the valve replaced within "5 to 10 years." Over the following 9 years, I got used to just "living my life" and doing whatever I wanted to do. I'm sure that I unconsciously compensated for my narrowing valve, but it didn't seem bad until the last year or two when I really started to slow down. One thing the cardio cautioned me about was not to participate in activities with "high dynamic range." This meant not to do things that would cause my heart to go from resting rate to high intensity rate instantaneously. With advanced stenosis, our hearts can compensate and deliver high blood flow, but it takes us time to "ramp up." If we have an instant demand for high output, our hearts cannot deliver and we may faint - which could cause injury and could force us into sudden cardiac arrest (not good!).

As to how they decide when you are ready for surgery, the first thing the docs evaluate is your symptoms. Here in the US, they usually are ready to head to the OR if you present with any of the "cardinal" symptoms - syncope (fainting), shortness of breath or angina (chest pain). Absent these symptoms, they go by numbers. They literally calculate your odds of death - odds if we do not operate versus odds of death in the operation and recovery. As long as your odds are better without surgery, they will recommend waiting. When your valve gets bad enough that the statistics are no longer in your favor without surgery, they will start to pressure you. It is not a perfect model. In my case, they waited until they were almost late. I had some complications in surgery and recovery that put me behind schedule in recovery. I will always wonder if things would have been better if we had operated sooner.

The docs also sometimes use your age as part of the determination of when to operate. They like to use mechanical valves for patients younger than mid-50's and they favor tissue valves for patients older than that. At your age, they will probably recommend a mechanical valve to reduce the likelihood that you would ever need a re-operation. You could demand a tissue valve, but if you choose that direction, you would almost certainly have to have at least one more replacement, maybe more. In my case, we waited as long as we did to ensure good odds with a tissue valve (I was 63 at time of surgery).

As to how all this affects you, we are all different. I made it through over 9 years waiting. In exercise, I pushed as hard as I could for as long as I could to ensure that I would be in good physical shape at surgery. I have to think that it helped. I also was afraid to stop the vigorous exercise because at my age and condition, I was afraid that I would never regain conditioning after surgery - and I sure didn't want to look and act any older than I have to!

I'm kind of rambling (that's what happens on Monday mornings. . . ), but I hope I have given you the idea that this is often a less than exact science, but you can continue to live your life while they are figuring it out. My cardio told me "Other than very extreme circumstances, people do not die from aortic stenosis. They get to feel so lousy that they come to me and tell me that it is time for surgery. I don't have to tell them." That's how mine went.

 

[newbud]

Yep, as I have had symptoms, I've fainted had chest pains light headed when just driving along not physically exerting myself it has freaked me to an extent that my physical output has changed . Squash is a definite no no as the explosive stop start was not helping my body that's when I noticed something wrong as guys I would normally beat we're running me in circles my stamina went downhill then straight after the game i would be like a zombie for half an hour recovering and I was only 30!! That's the frustrating thing as it can't help but change my mindset when it's noticeably affecting normal activities. As you said epsn I do not want permanent damage to my heart cause a doctor things I'm doing fine I think it can be a fine line we walk . Its not like its our knee wearing out its our freaking heart . Thanks

 

[Oilman]

Welcome to the group. I was diagnosed with BAV at age 18, it was classed as mild. I was a competitive ice hockey player at the time and was told to carry on as long as I had no symptoms. Continued to play until age 46, when a TIA occurred. My valve leak was moderate in my thirties and I wasn't told stop playing hockey at that point, again no symptoms. I can't remember when I was told that my heart was starting to enlarge due to the work it was doing. In hindsight maybe I should have been told to stop playing that game, as it demands a high HR at times. I loved the game of hockey, kept me fit for a lot of years. Maybe my heart today would be in better condition if I quit years ago, I don't know. I just didn't pay enough attention to the whole situation, hoping I would never need the valve repaired, but here I am. It's been changed and so has my perspective on my health today. Good luck with your tests.

 

[newbud]

Hi oilman, thanks for your history. As I was getting pretty clear signs from my body that something wasn't right when playing the sport I think it has given me enough of a fright to listen ( maybe too much) to my body and then the head games when doing normal,activities. I would rather take it easy than push myself and do permanent damage
Can I ask you if you or anyone out there after receiving a new valve have found a noticeable increase of energy
After surgery ?

 

[epstns]

I did find a substantial increase in energy, but it took a while to become evident. I had many complications after surgery, so that may have played a role. After several tweaks to my pacemaker settings and several adjustments to my meds, and after about 18 months of recovery, I can truly say that I feel much better now (23 months after surgery) than I did for several years prior to surgery. I guess that if I hadn't had all the complications and other odd things, I might have gotten to this point sooner, though.

 

[newbud]

Cheers epstns, I'm now starting to think that the merits with waiting for surgery are ok, chance of dying vs the risks of surgery. I am also aware due to what I read that the longer left with a deteriorating heart valve the more chance of other complications also.
As I am relatively young with symptoms already I can't help but think get this over and done with, less wear and tear on My mitral valve and aorta, less chance of the heart electrics getting "stretched?" Or whatever , less the body gets out of shape....

 

[MarkU]

My BAV was first diagnosed when I was about five years old and I was asymptomatic for most of my life, until age 47. My onset of symptoms was very gradual at first: fatigue and shortness of breath that I initially attributed it to jet lag, some long hours at work and being out of shape. Once my symptoms became noticable they worsened very rapidly over a period of about six-to-nine months. My biggest thing was chronic fatigue - even slight exertion would exhaust me to the point where it was dramatically affecting by lifestyle and ability to function. Never experienced any actual chest pains.

As soon as I started to recover from the trauma of my AVR, I quickly noticed a distinct improvement in my cardio function and the elimination of my previous symptoms, particularly the shortness of breath. I was able to resume a very active lifestyle, centered around training for triathlons. My main limitations these days are joint issues related to age and over-use, not related to my cardiac condition.

For what it's worth, prior to my surgery my resting heart rate was around 72 bpm and my blood pressure was in the pre-hypertension rate. Now 12 years post-op, my resting HR is 41 bpm and my blood pressure is in the normal range.

I feel very lucky in being able to return to an active lifestyle, knowing that it not the case with all valve patients. I am thankful to have a cardiologist who did not arbitrarily limit my activities post-op and encouraged me to explore my limits. The one condition my cardiologist imposed was to have some testing done to determine my lactic threshold heart rate (used to determine my aerobic heart rate ranges), and then wear a heart rate monitor while exercising to keep my heart rate within my target range. There have been a couple of occasions when running in extreme afternoon heat when I've had my heart rate spike and I've stopped running and walked home.

Hope this might help. Good luck to you.

Mark

 

[AgilityDog]

As someone whose surgery was delayed due to misdiagnosis (MVP, I don't have BAV), and suffering long-term damage, I'll vote with pushing to get the surgery done sooner, rather than later, because you ARE symptomatic.
Yes, after recovery your energy level should come back up - you'll be surprised at the difference!

 

[newbud]

Hi marku and agility dog, thank you for sharing that I feel a lot more at ease already after all these responses from everybody . The fact you are training and/or competing for triathlon amazes me. My mindset at the moment wouldn't allow me to head off jogging for half an hour due to previous lightheaded ness and chest pains. I am really happy that once this thing is sorted I should be able to keep up with my two young boys and have the energy, drive and some actual motivation to stay In shape for the foreseeable future is awesome. Thanks