How do you guys live in the "in between" doctors visits --- WARNING: Long Winded

[Roxx]

How do you guys live in the "in between" doctors visits --- WARNING: Long Winded

Note: I am certifiably nuts, so if you think the questions I am going to ask is going to make sense or be short...or that I will get to the point in a reasonable amount of time, I encourage you to hit the back button now.... as my post is guaranteed to make you laugh out loud, pee your pants, or at minimum, flip me off through your screen.

Background: Anxiety ridden 34 yr old male who throughout life has had days of feeling like somedays could conquer the world, other days...can barely go to the grocery store without going into a panic attack.

In 2009, had a panic attack at home which simply would not end.... at the time, was 30 years old, in college, married for 10 years, with one on the way, and a full time job. My wife stayed home with our daughter, my dad was at work, my mother took me to the hospital. I was given Ativan to calm down, and after a battery of tests, sent home with the diagnosis of "hyperventilation."

So, when I followed up with my General Practicioner, it was I, in my infinite wisdom that signed up for a battery of tests that he didn't even reccommend... this included, a Vertigo Test, A CAT scan, and a Holter Monitor.

On Holter Monitor one, it showed a few PVC's, and one run where there were several in a row that self teminated..... so we did Holter #2.... it was clear, then Holter #3...it was clear.... so they gave up on those saying I may get some PVC's sometimes.

So.... again, being brilliant, I decide to push the envelope and say "what other tests can we do?" Next up: EchoCardiogram

So at this event..... everything looked "pretty good".... except for it appeared I have a Bicuspid Aortic Valve.

So here we are 3 Echo's later, and here is what we know about me:

I am 5'11, 185lbs, athletic weight lifter
Aortic Valve is Actually Tricuspid, but not cusps are equal in size.
Aortic Root has been 3.7 on latest Echo
Aortic Velocity was 1.7 on the Last Echo
Aortic Valve Area 2.3cm2 on the last Echo
Ejection Fraction has been between 55-65% depending on the tech doing the Echo
Left and Right Ventricle both normal in size at the moment
1 out of 3 Cardios I have had have been able to "hear" a S2 murmur with a stethoscope

My notes say I have Trace Regurgitation and Trace Stenosis.

Symptoms: For years...I feel like I can't focus, get dizzy easily, sometimes can't breathe properly....I sometimes get "funny" chest and back feeling....BUT AGAIN... I lift weights...could this be muscle soreness..... THE PROBLEM: Is this just anxiety?

My current situation: Luckily, by the grace of god, over the last 6 years, I have been able to complete my masters degree, and last week.... I received a job offer for a fantastic job.

I am very lucky to have been offered this job, and it is a substancial raise over my current position.
My fear is two-fold...... Training happens 112 miles from home (scary for me, never been away from kids for a night) and when I change jobs.....Health Insurance with my new employer doesn't kick in for 90 days.... so I am scared of a "cardiac event" during this interim.

I have worked at my current job for 14 years, and eventhough I am probably underpaid for my experience and education level, the job is easy and creates no stress for me.

I am very sensitive to the stresses of life as it is, and the thought of having a "heart problem" while I am on the other side of my state training, or trying to perform well on a new high stress job is about enough to send me over the edge.

Given my numbers listed above, I have had 1 Cardio tell me maybe 30 years until intervention is needed, another tell me 20, and two different members of this website have told me "that's what my numbers looked like 15 years ago, and I just had surgery."

This may sound CRAAAZY but I am jealous of some of you that have already had Aortic Valve Replacement Surgery.... you seem to all be doing great, and you have this waiting crap behind you.

So, while I have unloaded all this on you guys, and realistically, should be talking to a psychiatrist, I ask: How do you keep your mind off this heart stuff? The ONLY time I am fine is when I am freshly out of a Cardio Visit.... and I am given no restrictions.... I am fairly normal for about 3-5 months.... Then, I start getting weird again.

Take now for example..... my yearly appointment wasn't scheduled until mid Jan. 15th 2013.... but I always start blowing up their phone sooner as I can never wait a year...I get too nutty. But now with this new job offer, fear, nerves, etc.... I called my Cardio office a few days ago, and in a tone that demanded to be taken as a prank call.... I demanded the first opening.... which is set for a week from now.

I wish I would have never volunteered for that first Echo, or I wish if I am going to end up with a new valve..... wheel me into the O.R. right now....as thinking about this is exhausting.

Thanks for reading.... I am ready for the roast to begin now.

 

[ElectLive]

This may sound CRAAAZY but I am jealous of some of you that have already had Aortic Valve Replacement Surgery.... you seem to all be doing great, and you have this waiting crap behind you.

So, while I have unloaded all this on you guys, and realistically, should be talking to a psychiatrist, I ask: How do you keep your mind off this heart stuff? The ONLY time I am fine is when I am freshly out of a Cardio Visit.... I wish I would have never volunteered for that first Echo, or I wish if I am going to end up with a new valve..... wheel me into the O.R. right now....as thinking about this is exhausting.

Thanks for reading.... I am ready for the roast to begin now.

Ok, Roxx, you asked for it... :wink2:

It seems to me that you may have already answered your own question here: in other words, if we all seem to be doing great (which the majority of us are in fact) post-surgery...well, then, what is there really worth worrying about? You are not facing the prospect of a firing squad here, you are not facing the prospect of walking through a mine field, you are potentially facing the prospect of an extremely successful surgery many years down the road.

You know, there are many aspects of life that involve risk, some just tend to gather a lot more attention/worry. Take driving a car for example. The average person driving an average amount of time over an average lifetime is just about as likely to die at some point in time from a car accident as they are from scheduling a heart surgery. Did I worry about not surviving my commute to the hospital the morning of my surgery? No, not at all. Did I worry about not surviving my surgery? Sure, couldn't help but give it some thought.

I am lucky to not worry much about anything, I admit. So, why not just volunteer for surgery now (assuming for the sake of argument that you actually could) as you say, to take the worry out of your mind? Well, as one who worries, perhaps you'd like even better odds. I posted a thread many months ago comparing outcomes of valve replacement now versus 10 years ago. There has been substantial improvement, and it continues. Another reason, again coming from someone who doesn't worry much, is that having successful surgery will not necessarily take all the worry out of your mind either. Most likely, you will be even more conscious of your heart condition. I could go on with other reasons...potential additional surgeries, introducing other risks, etc but that's probably more than enough.

So, at your age I was generally guaranteed I'd need surgery at some point in time, sooner rather than later, and I honestly never thought twice about it at the time. A few years later, I have the surgery behind me, my echo measurements are much better than that of my original parts, and yet, I do think about it from time to time. But very very little. I have a tissue valve and I am young, so I am in fact a ticking time bomb so to speak, but it doesn't matter what I do each and every day, it doesn't matter how much or how little thought I give it, my next surgery will happen when it happens. Back to the question of the day in your post, no real magic formula for me, I don't really have to do anything to keep my mind off of it, it just disappears naturally for me enjoying the daily activities and pleasures of life. Besides, if I really wanted to worry about something, who's to say it would even be heart related anyway, there's a lot of other potential medical conditions out there, even more fearsome, that can strike anyone.

Now, back to my car analogy, though...there is just something about the heart, something which just resonates much deeper, something which makes it not your run of the mill fear. So you are not crazy to have some of these thoughts. But, and I hope this comes out right, in my completely unprofessional opinion, it's not at all your heart condition that is the issue here. Honestly, your measurements are going to be the envy of most everyone here, and I'd probably second the thought that too bad you voluntered for that first echo. :rolleyes2:

Well, not sure if that was much of a roast or not, but seems to me that I may have offered up some more supportive, and certainly more medically inclined, advice to you in threads past anyway, so guess I'm off the hook either way. :thumbup:

 

[ElectLive]

PS - Forgot to offer my random job advice:

Being away from kids and introducing additional job stress is always a tough life decision, no matter what else is going on. Ignore your heart, factor in what you want and what is most important you, then just go with your "heart"! :biggrin2:

 

[Debbrn]

When I changed jobs I was able to transfer my insurance coverage even though it was a different company. I had no waiting time. Can you do the same thing. Talk to the insurance companies at both jobs.

Debbie

 

[Matt C]

This sounds like how I was I called up my old cardiologist prior to switching had some symtoms leaving gym. Told me I was having a panic attack twice (always admired that Dr still do but switched) turned out to me getting a new valve and anyersum fixed.

 

[Gail in Ca]

You may be having some symptoms of your valve not working as a healthy valve should. But, in my experience, the surgeons, cardios, all want us to wait until there is severe regurge, or other major symptom, like SOB, CHF, etc.
I felt kinda bad while walking my dog for many yrs, especially going uphill. My mitral was leaking mod-severe, but my repair/replace was always put off until worsening symptoms showed up.
They finally did, after I got bacterial endocarditis, which really messed with my mitral and aortic valves.
So, please do talk to your cardio, and get down to the nitty gritty of exactly when he might think of sending you to a surgeon for the fix.
Try not to worry so much!

 

[Roxx]

So, please do talk to your cardio, and get down to the nitty gritty of exactly when he might think of sending you to a surgeon for the fix.
Try not to worry so much!

I have asked every Cardio I've had that question..... first Cardio I had said "your valve has served you well for 32 years, maybe it will never need replaced?"
2nd Cardio when I really pushed said "Maybe 30 years from now intervention will be needed?".....3rd and newest Cardio I have said "it may take 20 years until you get to a point where we start thinking intervention."
To anyone else that would have probably been acceptable. For me.... he might as well said 20 days.

 

[Guyswell]

Roxx,

I hope this doesn't sound unkind. Here's my sincere reaction to your post. I seriously doubt that the symptoms you described have anything to do with your heart valve. From all the data you provided, it sounds like you have a minor problem with your heart valve that may never require surgery. On the other hand, it sounds like you do have some medically-significant issues with anxiety that are causing very real physical symptoms. Go see a psychiatrist and tell that doctor the whole story. I predict that you will find relief from your symptoms with proper diagnosis and treatment from a competent mental health professional. To use your words, I think it would be CRAAAZY for you to continue to try self-diagnosis when true relief is within reach.

 

[Mom2izzy]

I have to agree with Guyswell. I had some symptoms similar to yours prior to my surgery that COULD have been heart related, but the monitors weren't showing anything (other than some occasional PVCs which my cardio says most people have). My mitral valve WAS in desperate need of repair, so I did have the surgery knowing it probably wouldn't fix the symptoms I had. After surgery I still have some of the symptoms...my advice...Don't put your body through something as major as OHS when the condition of your heart doesn't call for it. NOTE: My valve was bad enough that anyone (don't even need to be a doctor) could hear it without the aid of a stethoscope just by putting their ear on my chest. I was asymptomatic for 33 years!

 

[Roxx]

Roxx,

I hope this doesn't sound unkind. Here's my sincere reaction to your post. I seriously doubt that the symptoms you described have anything to do with your heart valve. From all the data you provided, it sounds like you have a minor problem with your heart valve that may never require surgery. On the other hand, it sounds like you do have some medically-significant issues with anxiety that are causing very real physical symptoms. Go see a psychiatrist and tell that doctor the whole story. I predict that you will find relief from your symptoms with proper diagnosis and treatment from a competent mental health professional. To use your words, I think it would be CRAAAZY for you to continue to try self-diagnosis when true relief is within reach.

Thank you, and no, it doesn't sound unkind at all.
When I first accidentally stumbled onto the "possibly bicuspid, no wait, it's definitely a mis-shaped tricuspid" territory, I did see a psychiatrist and a cognitive behavior psychologist, and after 6 months or so, I was just about 100%.

Really, when I am fresh from a doctors visit with the Cardio, and he says no restrictions, then I am pretty good for almost 6 months, it's at about that halfway point when the next checkup is due that I start getting weird again.

I think right now it's the combination of a new job after 14 years with my current employer, and the fact that it's been 10 months since my last checkup is what is making a little nutty. Realistically, I keep trying to tell myself that of the 3 Echo's I have had since 2009, the numbers have just about stayed the same, or at least within a small margin of error, and chances are not much has changed in 10 months.

For what it's worth, I do take anti-anxiety medication and have since 2009... but when it gets this close to next appointment time, it's virtually useless. Thanks for listening.

 

[Guyswell]

Roxx,

Perhaps you and your cardiologist will agree that for you, it's worth a visit every 6 months just to hear that nothing has changed and you still have no restrictions. From a cardiology perspective, it won't be seen as necessary by your insurance company but it might be just what you need on a continuing basis to keep your anxiety about this issue in check. Maybe your psychiatrist could "prescribe" a semi-annual visit to a cardiologist for purposes of managing your anxiety.

 

[Sarah_Louise]

Hi Roxx,
Welcome to the boards,
I haven't got much advice for you as i don't know what its like to have a normal working heart one minute then the worries of a knackered heart the next, as mines always been knackered lmao! But one thing i have learn't, i will say is, "LIVE FOR TODAY, DON'T LOOSE TOMORROW BY REACHING BACK FOR YESTERDAY"
Sarah xxx

 

[MarkU]

I was first diagnosed at age five, and was told at age 15 that I would likely need valve replacement sometime down the road. I was completely asymptomatic and had no restrictions: I played football, ran track, was a competitive swimmer, wrestled and played tennis. Still, I would occasionally have bouts of depression and during one dark period considered whether or not I should get married and have a family.
But I mostly just got on with my life and put my heart issues in the back of my mind.
I finally started developing symptoms at age 47 and had my surgery a few months later.
Fortunately my surgery was textbook and I've felt fine physically ever since. However, I did suffer from some overwhelming bouts of depression post-op. It's gotten better over the years, but I still get the "blues" on occasion. It's actually pretty common with heart patients and I was fortunate that my hospital had a proactive approach and had me meet with a staff psychologist early on.
In many ways my life is better than before my surgery. I'm definitely calmer and more laid-back personality-wise. I'm more active physically and in better over-all shape than I was prior to my AVR.
Life is good and it's great to still be hanging around.
Mark

 

[Roxx]

Since I was going semi-nuts, my Cardiologist office was nice enough to work me in yesterday.
I has happy they got me in, but I was my typical anxious self.....
When I am at my family doctor for various reasons, my blood pressue is always like 110/60. Always, and a slow relaxed pulse.
NOT AT THE CARDIOLOGIST.
Ekg was normal..... but resting pulse was 102, and BP was 154/82

So low and behold, the man with all these accolades on the wall arrives. He looks over all my charts, and listens to my chest.... he says some good advice:

1) Your problem is your head not your heart.
2) You have a very minor variation of one valve. My educated guess is that it may last you a lifetime, but if it does ever need replaced, it probably won't be until you are in your mid to late 60's. That's 30 years from now, and by then, I can almost guarantee that Aortic Valves will be replaced via trans-catheter, no open sternum neccessary.
3) My question to you is do I need to get you on some BP medication, or Beta Blockers to get that pulse rate down?

Which I told him no.... as my pulse and BP are good until it's panic time.

He said he wanted me to check my BP at home and report back to him..... my BP is always 110/60 any other place but the cardiologist or during one of my many panic/anxiety attacks.

So, followup in a year.... I feel better now, but with this new job starting in 3 weeks, I think I may need to get with someone about getting the anxiety under control.

Thanks for reading.

 

[ladylunte]

I wrote a thread a week or so ago asking how do I not live in fear. I was born with - on the scale - a pretty mild and definitely treatable congenital heart defect, pulmonary stenosis, no TOF. At 4 months they removed my valve completely and I lived 26 more years with only 3/4 of the required valves. In 2009 I had OHS to get a bovine tissue valve. After surgery for about a year, I felt on top of the world and never worried about my heart. Then I had a suffer postpartum hemorrhage after the birth of my daughter, and that trauma made me think the common cold was going to kill me. Anxious is my middle name, but I seek treatment. Psychologist twice a month and low dose anxiety meds. It is so much better than feeling like a tiling time bomb. No medicine treatments that help (but you have to be rigorous and on top of it) - no caffeine, no alcohol, natural/not processed foods, yoga, cardio exercise, and meditation help. But with kids, jobs, life it is so hard to control the "craziness" naturally. Also, find a qualified cardiologist, not the run of the mill doing geriatrics or common issues. Look for university hospitals to find your specialist.

OH and the anxiety is your worst emery, not your heart. Promise you that.

 

[normofthenorth]

I'm with Guyswell: If seeing a cardiologist 2x/yr instead of once will make you feel less CRAAAZY, it's a bargain for you and for the medical system, whether or not there's a good cardiological reason for it. (There apparently isn't.)

Other than that, I'd say find a hobby (or job) that you're passionate enough about that you don't have the left-over attention or energy to obsess about trivially malformed heart valve.