Was/is your valve disease symptomatic before valve replacement?

[Duff Man]

Hey guys! Before your VR, were you feeling symptoms from having a stenotic/regurgitant/calcified valve? Like did you feel tired all the time, or maybe you had chest pains or shortness of breath?

I personally can't decide if I'm making it up in my head, if I'm just really out of shape or what. I wonder how much is just being out of shape or asthma or whatever. My treadmill collects a lot of dust, but 5 years ago at the same weight I was able to run a mile in about 8 minutes. 10 years ago I could run a mile in 7 minutes. Now I'd be very lucky for an 11 or 12 minute mile. That would be pushing it, and it's basically speed walking

I also get dizzy spells, especially after standing up quick or bending over.

What were your symptoms pre-op? AGAIN I'm not trying to complain, I'm trying to hear your stories, and share my own! This way everyone can see in one thread what led up to their VR.

Tell us here!

 

[fireftr]

Still figuring things out myself

Still figuring things out myself

I just learned of my BAV with moderate-severe regurgitation within the last year. I'm in the process of figuring this whole thing out myself. I feel like I am mildly symptomatic, especially in the gym. I am very active and have been consistently my whole life. I work as a firefighter which requires me to stay in shape, including yearly medical physicals and physical tests. Over the last couple of years I have found my energy level decline, especially after a workout or high stress situation, which tends to happen occasionally with my job. I really notice after weight lifting, especially isometric exercises. I stand up dizzy with very mild SOB after doing bench press or push ups. My wife even said something to me about a year and a half ago (before diagnosis) about my energy level. I attributed it to getting older (31) and taking care of two young kids and working a couple of jobs with crazy hours. I don't feel like my cardiologist takes me serious. I get the feeling he thinks it is all in my head after getting the diagnosis. I actually just retrieved my medical records during my last appointment and am looking for a second opinion, but that is a whole other issue. The cardio's response is that I shouldn't exert myself when working out. What is the point of that? I need to stay in shape for my job and he doesn't quite get it. That is a whole other thread so I will stop with that rant. Anyway, I have been asking the same questions as you. It is hard to know what are symptoms and what is in your head. I truly feel that some symptoms are present. The question is, when is it appropriate to act on them?

Eric
BAV with moderate-severe regurgitation
In the waiting room

 

[gmnordy]

I have no energy, tired all the time. I have frequent dizzy spells too and just generall feel bad all the time. I can barely walk up a short flight of stairs to go to bed. So no I dont think you are just imagining it all , Aaron!

 

[AgilityDog]

1. not being able to sleep except on several pillows, and even then waking up coughing and coughing.
2. Agility runs getting shorter and shorter, from 22 obstacles spaced 20 feet apart or so, to barely making it through 6!
3. Feeling like there was a wall in my lungs, surrounded by water, and no air getting through
4. Being unable, even while sitting still, to speak a complete sentence without gasping for air.
Yeah, I guess I had symptoms, alright!

 

[WayneGM]

First, I'll preface this by saying "everyone is different". I had no symptoms that I was aware of. Being informed my mitral valve wasn't working properly and I had severe regurg came as a complete surprise. I did the treadmill stress tests and the Cardio was surprised how well I did under the circumtances. However, despite feeling fine the OHS was necessary as the heart chamber had already started to enlarge.

 

[Dawn-Marie]

Back in November of 2007 i went into congestive heart failure because of critical aortic stenosis..the BNP test (which diagnoses CHF) should normally be around 100, but mine was 2,350. They fixed that with a 9 day course of IV diuretics. I have some chest pain, but my main symptoms are extreme tiredness (i sleep all night and then sleep half the day) and i have been having very erratic heartbeats, which isn't normal for me.

 

[pamela]

Hi Aaron,

Prior to both AVR replacements I experienced what I now understand as classic syptomology of a stenosed aortic valve.

AVR came about because I wasn't feeling as well as I thought a healthy 40 year old should and I booked a physical with my PCP. He didn't like what was going on and sent me to cardiologists. That's not what this thread is about so I will list my symptoms:

●From around age 30 I couldn't hold my hands over my head and work (I was a technician on F18's in the military) for longer than a minute or two at a time. I'd experience significant muscle fatigue and mild tingling that could be alleviated quickly through shaking my hands out.
●I felt heart palpitations, periodically for around 3 years or so that I didn't recognize as coming from my heart, more like gasiness or as I said to a friend after I was diagnosed, it felt like a baby quickening in under my diaphragm. As my stenosis progressed these settled into regular occurances of PVCs.
●My hands and feet were always cold (my entire life until AVR) and I was the go-to girl in my family for perfect pastry dough. My nail beds had a pretty amethyst shade and my hands and feet would tingle or "fall asleep" if I had pressure on the joints for brief periods.
●Extreme shortness of breath and frequent dizziness.
●Halos around lights and sometimes dimming of vision.
●Fatigue and the inability to sleep through the night without waking for air at least once.
●Edema ranging from mild to significant depending on my activities/rest pattern and position.
●Occassional chest pains that felt like pinching on the left side of my ribcage beneath my breast.
●Elevated red blood cell count.
●I could hear my murmur in my ears.
●Echocardiography showed thickening of the atrial septum that was obstructing the mitral valve, moderate hypertrophy of my left ventricle and heart muscle and my aortic valve stenosed to < 7 mm.​

AVR2 gave me similar difficulties and symptoms came quicker simply because the pannus buildup was very fast the more stenosed my valve got. I learned that they had been monitoring me for over a year and waiting for symptoms without letting me know. I now question my PCP about everything and every test I or my family have done. He has lost my trust but taught me a valuable lesson in self-advocacy.

I am currently worried (a little freaked out in fact) since many of these symptoms have returned over the past few weeks (I am waiting for echo results right now and we'll see what's going on). It's tough to remain confident that nothing horrid is happening, but que sera sera...

Take Heart,
Pamela.

 

[lynnconnolly]

I personally can't decide if I'm making it up in my head, if I'm just really out of shape or what. I wonder how much is just being out of shape or asthma or whatever.

Hey Aaron, I'm still awaiting surgery and also worry a lot of the time that the symptoms are in my head... until I give myself a mental slapping around, because I know they aren't! My symptoms are worse some days than others. I don't know why and I can't see any pattern as to why, but anyway, here they are:

I get SOB when I climb stairs or lift anything heavy-ish or bend down - like cleaning the bath - or even just getting dressed can do it some days. I find I get breathless if I'm outside and it's very windy. It kind of takes my breath away.

I get swelling around my ribs when fluid's accumulating - I've never had swelling in my ankles but my cardio will not listen when I tell him that, even at it's worst point, when I had a lot of fluid around my heart and lungs, my ankles never did swell. This tends to come and go a fair bit.

I get tired and can't find the energy or motivation to do much. When I do exert myself, even slightly, my heart races or it beats 'hard' though at 'normal' pace and I get very shaky. If I stand still, people can sometimes see that my whole body is shaking.

My feet - especially toenails - go kind of blue. I also get a blue tinge to my fingernails.

I get a 'boring' type pain/discomfort in my chest through to my back and often a prickly sort of sensation in my back and chest too. It's like a slightly painful itch sort of... This can last minutes to days at a time. It can sometimes ease when I stop doing whatever it was that set it off, but equally, it sometimes has no apparent trigger and still varies a lot in duration.

I've also noticed that a very loud bass beat can make my heart go nuts! I found this out because someone was parked outside my house the other day and had a car stereo belting out. I could 'feel' the bass beat and it gave me like a nervous, stuttery heart beat for an hour or so after he'd gone. It was pretty weird!

I used to get dizzy spells but I've not had any for quite a while.

That's about it I think

 

[Superbob]

All the time I was being diagnosed and scheduled for surgery, I was still doing a one-hour (or more) commute to a DC job, plus taking my dog on a long daily walk and sometimes working out in the gym.

About the only symptom I noticed was it started getting tougher walking up some steep basement stairs. Kinda huffing and puffing.

I did have some alarming dizzy spells -- once so much so that I got an ambulance ride to the ER. But heart checked out okay; emergency doc figured it was my old inner-ear balance problem flaring up. In truth, I think I panicked and made it worse. It is hard to separate the physical from the psychological when you are in that situation. I wish you the best as you sort everything out.

 

[ALCapshaw2]

MANY of our members had (or thought they had) NO symptoms yet their 'numbers' indicated that surgery was needed. Some even reported their valve was much worse than preliminary tests indicated. One or two literally 'fell apart' in their surgeons hands.

Others had numbers that indicated disease but were not yet in the range to recommend surgery UNLESS there were *symptoms*.

To "my" mind, symptoms usually mean 'something is wrong' and things are getting worse. Symptoms in a patient with identified valve disease is often enough to warrant a recommendation for surgery.

 

[Philip B]

Symptoms

Symptoms

Despite living a very active lifestyle with a deteriorating aortic valve and a growing aortic aneurysm, I experienced no symptoms during the twenty-seven years that I avoided getting the conditions checked. This was probably unique as many others report symptoms as common.

Based upon what others report as they deal with aortic valve issues, I feel very fortunate. For fourteen years of those twenty-seven years, I worked seasonally for the federal government on wildfire managment teams throughout the west. Despite my bad valve I never had any problems meeting the rigorous requirements of the physical testing to qualify every year, nor had any problems with the physical requirements associated with assignments.

My cardiologist suspects I had symptoms, but didn't notice or was too busy to notice.

As noted in some's previous post, we are all different and seem to experience different levels of symptoms.

-Philip

 

[MNmom]

I understand!

I understand!

I am scheduled for surgery next week already, and can honestly say that my "symptoms" presented with anxiety over the surgeon. Following a second opinion and new, earlier surgery date with one of the recognized "bests" Dr Sundt at Mayo, I have honestly not had the anxiety or "symptoms" since, even as the date draws near. There were two weeks between scheduling between the two surgeons, and during that time I felt aware of every breath and hyper focused on all activity i did. From what my numbers look like with my aortic valve with severe stenosis (mean gradient 55+) and aortic aneurysm (5.5+) I supposedly should be feeling symptoms, which is also why I think I dreamed them up (it was expected.) I still have a feeling that I will feel better in more ways then just getting the surgery over with soon!
Good luck!
MNMOM

 

[ponygirlmom]

Hey guys! Before your VR, were you feeling symptoms from having a stenotic/regurgitant/calcified valve? Like did you feel tired all the time, or maybe you had chest pains or shortness of breath?

Of course! That's how most people get diagnosed: they go to the doctor with various complaints, and the doctors investigate, and voila! It's the heart!

 

[mrwjd]

My symptoms--slight shortness of breath and some lightheadedness--were so mild that if it hadn't been Friday, I wouldn't have gone to the doctor. But it was, so I stopped by to ask her nurse practitioner to listen to my chest. Nothing wrong, I told her, just here for a little reassurance so I won't fuss about it over the weekend.

A few minutes later, there were eight EMTs in the office, and then I was headed for the hospital in an ambulance.

The symptoms didn't get worse, either. I avoided putting a load on my heart so as not to develop a symptom my cardiologist and surgeon called "sudden death"--which can, by the way, result from being in a hot tub or eating a big meal as well as from exertion. Some three months from that first day, still suffering only a little shortness of breath and lightheadedness, my valve's open cross section was 0.6 sq cm. We set a date for surgery, and I was still feeling fine when I walked into the pre-op room.

I think every doctor, resident, and medical student who had been in the OR came by my room at one time or another to tell me that my valve had been notably nasty. It made me happy. Like you, I didn't like to trade in the old one until it was used up, and I think I got almost the last mile out of it.

The point to this little walk down memory lane is, of course, that symptoms may take you to a doctor in the first place, but they can't be trusted to set a date for surgery or to let you know when you are walking in the shadow of that "sudden death" thing. You and your doctor will decide the date using test results, not symptom reports.

Good luck, Aaron. You'll do great.

 

[zipper2]

Hi Aaronj,
I had a aortic valve replacement 16 years ago at age 30
mitral was also questioned as was told by heart surgeon it
would outlast the mechanical one ,so they left it alone.

symptoms sure had none in early stages,as i had rhueumatic fever at age 16,nothing bothered me till 30 shortness of breath,regurgitation,fainting was a biggie for me,dizzy especially with th angina.A heart murmur was detected at a routine check-up and all went from there,i didnt have this great vr family to rely on and my husband with so many of his own fears also,i mean he went through his own hell cause,i was going through denial,i wasn't having this done and my cardiologist had no sugar coating on the candy so to speak. He said it like it was,i had less than a month to live if i didnt look after and have the heart surgery now. Still in denial and my children all daycare age,i worked and worked to never have to deal with the reality of this,it just wasn't fair to my husband,and children.....I was angry so i worked and worked,wasn't till my husband made me realize what i was doing to them and myself that i ended up more ill and was sent to hospital that day and with a very enlarged heart and sob, the surgery was completed within the 2nd day and by the 4th day i felt so good ,i could actually breath again,the best thing that ever happened to me was surgery.


Now since Nov 2007 i've really noticed an increased cough,sob on any difficult task(example) carry groceries in seem to do this all the time when everyone else is at work and i get stuck alone carring,up and down the stairs
with laundry,if its my imagination great!!! but i think not.
the swelling in my feet and ankles is causing me pain and discomfort a great deal of the timeeven keeping elevated doesnot get the edema to leave,only bedtime takes it away and soon as i get up they start swelling again immediately. Im also fortunate to have been diagnosed with congestive heart failure which indicates the heart isnt pumping effectively enough to meet my needs for oxygen rich blood,either during exercise or at rest. I have no chest pain at all,had an echo done recently on may 12th and was made aware its run away in a missing category. they are looking for it as of today.
2 years ago i cought endocarditis,the infection didnot hit the valves or heart,as they tested and retested and over a month on iv antibiotics,back for last trans echo all fine,i just got tired of Dr's and running 8 hour trips and now im late with getting anything checked since the end of the endiocarditis,
now my cardiologists moved and im starting with the cardiologist the first 16 years ago with the no sugar coating on the candy(lol) he too is now 8 hrs away in another direction and i spoke with him today and on the 3rd of june at 1:30 pm i will be in his office where it all began 16 years ago for us.
Hopefully i can get to bottom of all thats effecting me now and if surgery..........well great cus im so experienced now at age 47 where at 30 i wasnt ready for any of that. You'll do fine Aaronj just you see when its done and you'll wonder too why all the fret. Take care and all my thoughts and prayers go out to you.



zipper2

 

[Turkey Hunter]

I was 27 yo when I had my surgery and was in fantastic physical shape. (aspiring bodybuilder). So I was in the gym 5-6 days per week with routine of heavy lifting and cardio-vascular. What happened to me ( I knew about my 'mur-mur' since childhood) was I did develop symptoms over the years but my mind made up other reason for what I was experiencing. For example; I would get short of breath very rapidly but was able to continue the routine and finish and I just told myself I had mild asthma. Lots of other examples; point is don't let your mind work you either way; I f you think you have symptoms pay attention but don’t concentrate or worry about them and for God sake don't ignore them if you think you might have them.
So in short, yes I had symptoms but did not realize it until post Ross Procedure.

Ben

 

[lucky401]

I am scheduled for an AVR for my bicuspid valve and aneurysm replace/repair and mitral and tricuspid repairs on June 16th. I have known for years I would need an avr but never had any symptoms that would disrupt my life until this past fall. I have had palpitations since childhood and could never keep up with other kids when it came to gym class or any kind of athletics but never thought about it. This past fall I started to feel tired a lot and couldn't keep up on the treadmill the way I could before. I was aware of this but did nothing about it until April 2008. I went to a new cardiologist and he ran more tests and said the time has come for surgery. As time goes on I am getting more and more fatigued (and more easilty) and have long periods of light headedness. I don't walk much on the tread mill anymore because of the lightheadedness and the pressure in my chest that I get when I try to exert myself. Even this weekend I went in the yard and was weeding and triming some bushes and after 45 minutes or so I thought I would pass out. I felt terrible - chest pressure and overwheming fatique and lightheadedness. I was so upset that I can't even do some weeding. Even though I was on my knees I think being bent over made things worse. Don't know. But I do know that I am glad to be getting this surgery so I can feel better - even though I am scared as well.

 

[strudell]

I had no symptoms that I knew of. I went in to a General Practitioner to get my knee checked out because it had been bothering me for some time.

He asked me if anyone ever told me I had a heart murmur. After a few tests later, I found out I had severe Aortic Stenosis with regurgitation.

After my surgery last week, my surgeon told me I didn't even have a bicuspid valve. I basically had a hole in my Aortic that let the blood through.

If you do have symptoms, get it checked out. Even if you don't, get you heart checked. It can't hurt.

 

[catwoman]

When I was diagnosed with MVP, I had no symptoms.
However, the symptoms crept up over the years. A day here and there, I called in sick because I was just too tired to work that day. I had a couple of episodes of my heart racing -- but what "normal" person doesn't?

By the time I knew something was wrong, I was perspiring a lot. I was tired much of the time.
And then one day I could hear my heart valves slapping away. I mistook the noise for a water leak in the master bathroom.

 

[KAJ]

My changes were very gradual. I could not stand in one place for more than a minute or so without getting tired and having to sit down. I would also get out of breath while using my self-propelled mower. All of the changes were so gradual that what was really abnormal started to feel normal to me. Only in the fast few months have various people told me how bad I looked before the surgery. They did not want to scare me.

Karl