Total Newbie to Bicuspid would like some advice.....

[Roxx_yer_Soxx]

Hi Jeanie....

Thanks for the post and the love.

1) No caffine. I havent taken a drink of pop/soda since June of 1994 when I was 16. 15 years later, it's hard to remember what Coke, Pepsi, or Mountain Dew taste like....although Dr. Pepper and Root Beer are easily remember cause they are so distinct.

2) I wouldnt drink a red bull, monster, or any other drink like that for money.
3) I hate coffee & tea both

4) "Big boy pants"...... thats too funny cause it's true.
What's funny is when this main cardio guy walks in the room..... since I have seen him 8 times in 3 months, he's becomes like a uncle that you mess with at the Holiday's....... plus, he looks just like Dr. Bob Kelso from the show "Scrubs"...... he'll walk in, roll his eyes......say "what are you doing here".....meanwhile, I am like "play" boxing him in the ribs......

I'm going to go out on a limb and guess this is not how the typical appointment goes at the Cardio.

But then......2 minutes later, he'll talk anything heart related.....and I have one of my famous panic attacks and have to leave the room.

Luckily, it's been several months since I have been to him, and have no plans of returning. I am suppose to have a Echo done in the Fall of 2010, other than that, I have no follow up with him.

 

[Jeanie]

I am so glad you did not appear to take offense, as my intentions are/were the best. I've had to remind myself not to hyperventilate recently when I become short of breath, to breathe slowly and fully exhale. Is it possible that when you start feeling anxious that you are hyperventilating? If you are, that is actually a good thing because it is fixable, just takes some conscious thought about it. The human mind is amazing, and can be 'progammed' in certain ways by our consciously turning our thoughts in certain directions. Good luck!
Jeanie

 

[drivetopless]

Hang in there. It seems like you've got very littel wo worry about at least for years and years.
When I was diagnosed it was quite shocking and created a lot of hyper-awareness and symptoms. It turned out those symptoms were anxiety induced. The few symptoms I have I can almost always tie to anxiety/panic. Even now-13 years after being first diagnosed--I can tie an increase in my symptoms to an upcoming cardio checkup rather than a real change. Panic/anxiety feelings do seem to living in your chest, don't they?

As my Dad always tells me, try not to spend any time worrying about things that you can't control. It sounds like you may never need surgery and having a checkup every 2 years will be enough to catch anything should your condition change.

Good luck!!!

 

[Roxx_yer_Soxx]

Wow gang...time flys
It's been like 8 months since I posted here.
Well... no symptoms, and thanks to Lexapro 10mg, I seem to have my anxiety 95% under control.

Sadly, my great doc moved his practice 150 miles away.
Today I saw another doc at the same practice.... I wasn't digging him.
All I wanted was to set up my annual ECHO which my original cardio said to do in the July 2010 area...and if
everything looked the same....space the ECHO's to every 24 months.

Today's appointment was a nightmare.
I have a high end blood pressure cuff, and it's right on the money with
our family docs office....

I am always 105/60 to 125/75 (top & bottom will vary accordingly....but never over 125/75)

2 weeks ago at my regular docs, I was 106/61....

Today at the "new" cardio.... I was a anxiety mess.... BP was 148/88 .....they took it a few minutes later
it was 142/78

I assured them if they took my BP in the lobby as oppose to beside the 10 machines...it would be flawless 115-ish over 60-ish

They acted like this was the most obscene BP they had ever seen.... and the Cardio put me on a BP medication

What?? Yeah... don't worry...I'm not taking it.

Next... as some of you may recall (or if you read my original post) you will see that I have a "possible" BAV
It may be a Bav or a odd shaped TAV
But...I have no click,no murmur, no stenosis, no regurge.

My original cardio's opinion was....it makes no difference what kind of Aortic Valve I have...its functioning fine... just watch it with 12-24 mon Echo's

Sheeesh...with this guy....a 1 time 142/78 BP reading landed me a Blood Pressure prescription (not taking)......and a script for a Beta Blocker.....NOT NEEDED.... He asked me how
often I feel "a flutter in my chest"....I said I feel maybe 1 PVC a week...and I ignore it. He said "I want you to feel none".... so he gave me a script for a Beta Blocker.

Next.... he insists that I have a Transesophagel Echo because he wants to know for sure if I have a BAV or not so he knows how aggressive we need to be to treat this.
This sounds dumb to me too.
Get aggressive? Does he think if I take 2 Flintstone's that I'll grow a 3rd flap?

I don't mean to sound like a sour puss.... but I am just now starting to get my life back..... I am loving life right now....enjoying my kids.... enjoying intense workouts (i hardly ever get winded, and outlast these punks 10-15 years younger than me).....things are much brighter than the dark days of 2009 for me.

The last thing i want to do is start another bout of depression, and severe anxiety to have a battery of tests done for what I think is a waste of time.

I have no Stenosis, or Regurge...Normal Echo numbers and function in everyway ...and no symptoms.

If you were me would you do the TEE Echo? Would you take these scripts I was given today? Would you look for a new Cardio?

Also...he let me know today...with him....I can either do a TEE or find another doctor....he WILL NOT let me do just another regular Echo.

 

[ALCapshaw2]

Almost makes it sound like the 150 mile drive to your Old Cardio would be worth the trip !

Clearly you got off on the wrong foot with this New Cardio.
He doesn't know you and you don't know him and you got crosswise.
NOT a good sign. (and it usually doesn't get better)

Alternatively, Do you have a record of your home (and PCP) BP numbers?
That might be a place to start with this cardio if you want to try to make it work.

Good Luck !

'AL C'

 

[Johan]

Al is right, you seem to be in a good space now with the Lexapro, you don't want to mess that up through this cardio's actions.

I am in the cardio maintenace programme at the gym and our BPs are taken 3 times a session, 3 times a week, in other words a lot of BP readings for the record. Mine is normally 120's over 60's at rest and then lower after exercise. Every now and then I would arrive there and the BP reading would be in the 140's over 80's, once it was even 150. The nurses don't turn a hair, these rouge numbers don't mean a thing, it is the average consistent numbers one should look at.

To medicate you on one BP reading seems odd and the TEE looks like overkill in your case. I'll find another cardio, if possible, or drive to your old cardio, as Al says, or at least communicate with him about the above, see what he says.

There is nothing wrong with your heart, from what you say it is clear that it is functioning absolutely normally, in other words nothing to worry about. It is therefore very important to keep your mind at ease and continue with your life between echo's every 24 months.

 

[Bill B]

Welcome aboard, even if you don't have BAV.

I had BAV my entire life and never knew anything about it until I was 61. Had you not had this echo, you probably would be more like me, and not discover it until far later when a murmur develops and causes your doctor to recommend an echo. I never had any symptoms at any time, but my valve did deteriorate rather rapidly after it was discovered and I got the surgery when it reached a critically small size even though I had no symptoms. There should either be definite symptoms or SOME good indication that the valve is failing and could harm you. You have no relevant symptoms and no indications of valve failure now or that it will develop in the near future, and you may never have a problem with this valve, as others have said.

I was glad I never found out about my BAV until it became a health issue at 61. So I never gave it a chance to affect my life. I ran track in high school and marathons later on and was damn fast and had an incredible cardiovascular system.. You are an admitted worry-wort. I'm not sure what I can say that would stop you from worrying about this. Do whatever you can to forget about it entirely between the occasional follow-up echos. Stay as active as you were before the echo. Your cardiologist already told you not to worry.

If and when you ever need the surgery, by that time it will probably be an outpatient procedure done in 30 minutes. Instead of these subprimate tissue valves and oddball plastic trapdoors, they will probably insert a native valve grown by manipulation of your own stem cells that were genetically altered to eliminate the BAV gene.

Stop worrying about health issues you don't have. That could make you sick! Have more faith in your body.

Bill

 

[Roxx_yer_Soxx]

Al,Johan & Bill... how refreshing it was to wake up and see responses from you 3. This is such a wonderful site.

Johan, yes. On my home BP cuff, it has 60 readings in its memory over the last 90 days.... my highest BP on record was 129/76 my lowest was 98/59....all other readings were between this.

As you are all intelligent enough to know....these numbers DO NOT warrant a prescription for high BP medication.

I loved my old "Dr.Kelso" cardio, but a 150 mile drive is not feasible.

I do think I will be shopping locally for another cardio though.

If I don't trust this guys opinion on BP meds....I don't trust it with anything else.

I think it's almost reckless of him to prescribe a high BP med (to someone with diagnosed Anxiety & Panic disorder that is noted in my chart he was holding) due to
one BP reading in the 140's over 80's.

And a Beta Blocker med for a occasional PVC here and there? Not needed.

I just need to find someone reassuring that will allow me to do my once a year, or once every 2 year Echo. If/when a Echo shows that I should do further testing...I certainly will
but until then.... a battery of tests, and a cabinet full of un-needed prescriptions are not what someone with my history of anxiety/ocd needs.

Thank you all for reading this.

 

[Roxx_yer_Soxx]

Ok, well on Sept 15 (this Wed) I'm going to try my luck with a new cardio. The last "new guy" I had office called and said if I don't do the down the throat Echo, that he would be dropping me as a patient.

I forgot to mention in my July 2010 post that my father suffered a heart attack in April 2010..... can you just picture Anxiety ridden me getting the call from my mom??
My dad works 3rd shift. He made it through his shift, and drove himself home. My mom called and said "your dad is very sick with a gall bladder attack." I talked to him and asked him what he wanted me to do.....he said "my stomach is upset, I may need to have you take me to the hospital." I live 30 miles away in a bigger city, my mom had had hernia surgery 4 days before and just got home herself.

So my mom calls back and says "I'm going to try to take your dad to the local hospital (very small, and more like a doctors office)." I said fine.... I'll be there in an hour.

My mom calls 15 minutes later and says "Your dad is having a heart attack, they are life flighting him to your city."

Not good.

My dad is 58, healthy as a horse, strong as a ox..... WOULD NOT accept a gurnie.... WALKED HIMSELF onto the helicopter. (you would have to know the man)
My mom asked him for his keys and wallet....he said "I'm not even cold yet, and she's already taking my money."..... They have been together 40 years, married 38.

So I was there to meet the helicopter on the 7th floor.... my dad & I are close.... real close. Talk at least once a day close.
BUT...I've never told the man I loved him.
By the time the helicopter arrived, he was on the gurnie...I walked up to it...tears in my eyes, and said "I love you dad."
He said..."I know, now knock it off, you'll upset your mother."

Dad's wonderful doctor inserted 3 stints and cleared 100% bockage in 2 major arteries in 30 minutes.
In the consultation room the Dr. said that "he had a major heart attack that probably started 3 or 4 hours ago, how he kept working was beyond me, he's amazing."

6 months later, following doc's orders...dad is running on the treadmill.... down to a slim 6'0 tall, 184lbs....not bad for 59...and we were happy to celebrate his 59th B-day in August.

My dad's surgeon/cardiologist is my new doctor I will be seeing Wednesday.

Oddly enough....my dad's situation CALMED ME down.
And while some experts may say there is a connection between my father and I.....(heart wise)
I don't think of it like that:
Dad's always had high BP.... mine is perfect
Dad's always had high cholesterol....mine is perfect
Dad's Triglycerides always high....not mine

Dad had doc's wanting him on meds for these things since the mid 1990's...he refused (mistake)

My dad has a perfectly formed Tricuspid Aortic Valve (yeah...I have his Echo report)...I may have a BAV???

My dad ate junk for 30 years...and I mean junk

I am a working out...healthy eating machine

So... I just assume we have two different situations.

#1) I am going to thank this doctor on Wednesday for saving my dad's life
#2) I am going to pray that he will just allow me to get a good ole' regular Echo to follow up on last years.

Thanks for reading.

 

[Robb Wilder]

Just for your FYI, I was born with Aortic Stenosis. I just had my valve replacement at almost 38 years old. I was SINGLE CUSPID valve with an Aortic Anyurism of 6. I neglected going to the cardio for 5 years. I am very lucky. I didnt go to the cardio probably for the same reason you have gone as many times since december. Anxiety.

 

[Johan]

Hi Roxx, I enjoyed reading your latest post. The story about your dad has a happy ending although it must have been very stressful for everybody at the time.

Another possitive spinoff for you personally, apart from the even closer bonding with your dad, is the fact that you now seem to have an interventionist cardiologist who you feel comfortable with. I genuinely hope that you get to where I was the last 25 to 30 years where the same cardiologist used progressively more sophisticated echo machines to send me away for another year or two of totally normal living. He is also the guy who stented the offending artery when I had a heart attack 6 years ago. This cardio has now retired and a younger colleague took over to eventually take me through the AVR experience.

I wish you the same, a totally normal life with regular monitoring of your valve and then possibly in the distant future a repair or replacement of the, at this stage, suspected BAV!

You are young and with your healthy living and very low cholesterol and other numbers, you will not suffer the same blocked coronary artery scenario your dad and I went through. When he and I were young there was little general knowledge about healthy living and heart disease, we just muddled through.

You now have the advantage of all this knowledge and wonderful technology, so live your life to the full with the occasional checkup. Good luck with the echo session with the new cardiologist tomorrow!

 

[Roxx_yer_Soxx]

New Cardio is great.. He looked at the Echo from June 2009, and felt it was nothing. I have a Echo set up tomorrow at 3:30pm.... he said he wants his best tech to get the best pictures he can get, as he is not even sure I am Bicuspid, as he said 95% of the time he can hear it with the steth, and cannot on me, he thinks there is a chance I had a tech that simply could not visualize the 3rd leaflet. With that said, even if it is a Bicuspid, he said that with no leak and no stenosis, he would space the Echo's out to every 2 years.

I would sure love to never leave the waiting room on this deal..... I'm not going to get my hopes up on thinking it's some form of Tricuspid.....I'll just be happy with anything that's working properly with no problems.

 

[Johan]

That's the way to go. Positive thinking that you may never need the operation but if the time comes it will be at a ripe old age, like many of us here!

 

[Roxx_yer_Soxx]

Well....sigh.... I just back back from my Echo.

Fantastic Tech, only took 20 min total.
And this lady was gabby...she told me anything I wanted to know and then some.

I am going to have a very hard night tonight.

The bad news is she still couldn't visualize my Aortic Valve any better than the last tech in June of 2009......she said "it could go either way."

The good news is that whatever valve I have, I still have no leaking or no stenosis....not even trace of either.

THE VERY BAD NEWS is that in June of 2009 my Aortic Root was measured at 3.4, today she had it at 3.8.....NOT GOOD. :-(

This size & growth in 15 months almost insure 2 things:

1) I probably do have a bicuspid
2) Probably no way I'm going to avoid surgery

It's going to be a long night.... this is wasn't the results I was hoping for.

 

[ALCapshaw2]

Roxx -

That's why most Cardiologists do NOT want the Echo Tech's telling their patients anything about their echo.

IF your root growth continues at the same rate (0.4 cm / year or so),
it would take 3 YEARS to get to 5.0 which is the usual recommendation for surgery, OR NOT.
Hopefully your Cardio will have a better perspective on your prognosis.

At 3.8 cm, NO ONE is going to be sending you to interview surgeons for a while.

One more thing. Echo's are not very precise and are highly operator dependent.
The Gold Standard for measuring aneurysm's is either a Chest CT or MRI.

Pour yourself a drink of your favorite beverage and watch a good movie.

'AL C'

 

[Roxx_yer_Soxx]

Al, thanks for the caring words.
Right now I am just trying to settle down and not have 1,000 negative thought run through my head.

What's a real kick in the pants of all this is that they are telling me that my aoryic valve (whatever it may be) is absolutely working perfect,
without the first whiff, hint, or trace of stenosis, or regurg.

I know... thats suppose to be good news, but in my case, I now am left questioning why is this root growing?
Was it actually 3.4 before?
Is it actually 3.8 now?

I would hate for the valve to keep working perfect....yet the root grow to a point where there is no choice but to do a repair.....

I mean....if I do end up having to have this done (right now it's a struggle for me to even type that sentece)....I sure as heck want it all done at one time.....
as I am 99.9% sure now I have a BAV......

If it were up to me (and it's not)..... I would do this surgery tonight....mechanical valve without question...and just do it all.

I cannot believe I volunteered for a ECHO thinking that will come back perfect....and landed myself in this.
What even worse = is sitting around waiting/wondering/thinking about this for the next 5,10,15, 25 years.
I really would have been much better off knowing nothing.