Getting past denial.

[james]

Ok so I am finally willing to admit I have some problems with heart and it is not just something that the doctors are making up.
Yes, I have been complaining about being tired for a couple of years and it has gotten worse.
Yes, I have self diagnosed with many other diseases that I do not have. Remember when I was sure I was a diabetic because of the light headed feelings I got when stressed out or after working out.
Yes, my chest has felt tight or thick and now I don't know if that was really just my pectoral muscle.
Ok so I admit I feel like the detective in Usual Suspects when Kaiser Sosai is walking away and he starts to notice all the clues in his office. The past few years are adding up and I just want to feel better. I meet with the Surgeon at 4 on Monday and I am going to just ask him when we can get this over with. Going to the gym, eating a salad, taking fish oil and all other sorts of good living are not going to fix an 85 gradient and severe backflow.

 

[Maryka]

Congratulations on your moment of acceptance! I had 17 years to build up to mine, which was good for me because I was still a young parent when I first had to think about OHS and I was terrified about the whole thing. It all went well when the time came. Good luck with your medical appointmnets and plans!

 

[Bill B]

85 gradient! Feeling tired for a couple of years. Friend, you need to get this fixed ASAP. An 85 gradient is hell on your left ventricle. It's best to do this when you are in good shape and not sick and your ventricle is not all distorted. I think the surgeon is going to clue you in. Mine did. Boy am I glad I did not wait any longer.

You do seem motivated and want this overwith - great. I had a bigger problem on my hands as I had NO symptoms at all and never felt tired. So, this BAV seemed like a bad dream that I would wake up and find was not true. But it was real, and despite my lack of symptoms, my valve was found to be a complete mess when they opened me up. Now, I am weaker than before surgery, but only 11 days out and anemic from surgery. So, don't expect instant results, but with a month or two after the operation your should be better than ever.

Best of luck.

 

[tobagotwo]

It's hard to come to grips with it, but your body will eventually rat you out to the part of your mind that's in charge of these things.

Congratulations for taking the initiative now. Make it happen quickly, so you can make it into something that you already did.

Be well,

 

[Philip B]

Denial

Denial

If you've got symptoms it's time to get things fixed.

I never had any symptoms. Denial was never really a problem for me as I knew I had defective aortic valve. The lack of symptoms made it easy to simply ignore the problem. I just made a point of avoiding doctors. I managed to avoid seeing a cardiologist for twenty-seven years after hearing something I didn't like from one of those guys.

Things seem to work out as life intends and things worked-out okay for me in the end. You're on a good path. I suspect you'll have a good outcome as you move forward to get things fixed.

-Philip

 

[vhmoriarty]

Honey, I want to tell you YOU are not alone. I am 29 and my gradient is now 100. When I went in last week to meet with my team...they said someone has been watching over me for a while cause they hadnt seen anyone with it over 60 around my age that survived.

PLEASE GET YOURSELF CHECKED OUT....you dont want to go outta the ball game just cause your guardian angel took a vacation day.

 

[halleyg]

That's like me, I thought healthy living was a sure-fire weapon and it was hard for me to accept as well (even after OHS I think!)... but you will feel so much better when you get things taken care of. Best of luck to you.

 

[Kathy McCain]

Hi James,

Please do your self a HUGE FAVOR and have your surgery!

It was a terrible shock for me, when I was diognosed with aortic stenosis! After the shock, depression, and the denial, I was ready to "go for it", as soon as possible. Ultimately, you will feel better, and you will certainly add years to your life!

Good luck and keep us informed please.

 

[river-wear]

Congratulations on moving past denial. That never did anyone any good in the long run.

I knew for 38 years that I'd need to get my heart fixed and it still came as a shock! (Was diagnosed at 4.) It was easy to go through the motions of seeing the doctor, hearing "yep, still looks the same" and being all set for another year. Until this year anyway.

Good luck in your journey! You found a good place for support.

Did you have a new valve put in back in 1980, or was it a repair?

 

[Bill B]

The deal with BAV is that the valve is usually quite stable and perfectly OK for many years. Then at some point, usually in your 60s or 70s, but sometimes much, much younger, the valve begins to deteriorate. So, the diagnosis itself does not mean you need surgery now or even ever. The need for surgery is based on the echo observations of valve size, condition, pressures, and left ventricle size and function combined with symptoms. So, like all of us here with BAV, I had this my entire life, ran marathons and was fine until I was 61. Actually I was still feeling fine right up to the day of surgery, but the valve started to deteriorate extremely rapidly based on three echos over 9 months. That is when you have to bite the bullet and fix this sucker before it gets really bad.

 

[Dennis S]

Here is the good part--there is hardly anything so serious that is so fixable. I love my new valve.

 

[MaryC]

That acceptance thing is tough. In 2006 I had been seeing a cardiologist for 13 yrs when my brother had a unexpected mitral valve replacement. After his surgery his surgeon was giving all of us the run down on how my brother's surgery went. Somehow we ended up talking about all of our mitral valve issues, including mine with severe leakage. He looked directly at me and told me if I was having severe leakage I needed to be in there having surgery before my heart was permanently damaged. I felt like I had entered the twilight zone because I thought I was just going to be having an annual checkup and never thought I would actually have to have surgery. I ended up having a mitral valve repair a few months later.

Best of luck!

 

[skeptic49]

Good posts, Bill B and Dennis. You're in my thoughts, James. We all have issues of acceptance and denial to deal with at some point.

Best wishes,

Jim

 

[james]

Just met with Dr. Aldea. We went through options and it looks like we are going to put in a mechanical valve in January. The good news is he feels the option to wait is there and not risky. The better news is that this guy has done thousands of heart operations and specializes in valve work, including research. He actually did a catheter style replacement surgery this morning. He said this advancement is really looking promising for a lot of people. I will not be one of them but, this is really great news for many of us.
Anyhow I get to spend the couple months losing weight and enjoying time with my family. I expect a round of layoffs about the time I go in so my being out for a couple months may save someone a job.
I will also be able to go to Pasadena for the Rose Bowl to watch Oregon crush whoever they play!
Thank You Everyone. God Bless.

 

[ALCapshaw2]

Did this surgeon discuss the 4 or 5 types of Mechanical Valves made in the USA? (ATS, CarboMedics, On-X, St. Jude and the older Medtronics valve)

Did he give you a choice?

Check out the Valve Selection Forum if you would like to know more about the options. Websites for the different manufacturers can also be found in some of the old posts (or do a Google Search).

'AL Capshaw'

 

[Bill B]

My position on valve selection is to pick the surgeon and to let the surgeon pick the valve. That may be unpopular here, as this site aims in part to empower you with information so you can make better decisions. I spent a month trying to outsmart my surgeon before I concluded I would just potentially muck things up if I asked him to do something he did not favor, even though he seemed happy to oblige. I became enamored with all the unique features of one valve versus another. However, few to none of us here have any of the education, training, experience or credentials to evaluate rigorously one brand/model versus another. I thought I might but finally I decided I was just being a control freak for no good reason.

 

[ALCapshaw2]

My position on valve selection is to pick the surgeon and to let the surgeon pick the valve. That may be unpopular here, as this site aims in part to empower you with information so you can make better decisions. I spent a month trying to outsmart my surgeon before I concluded I would just potentially muck things up if I asked him to do something he did not favor, even though he seemed happy to oblige. I became enamored with all the unique features of one valve versus another. However, few to none of us here have any of the education, training, experience or credentials to evaluate rigorously one brand/model versus another. I thought I might but finally I decided I was just being a control freak for no good reason.

Interesting position, BUT, that begs the Question:

What criteria did you use to Pick your Surgeon?
(and Yes, I know you picked an Excellent Surgeon)

If you didn't "here have any of the education, training, experience or credentials to evaluate rigorously one brand/model versus another", what "education, training, experience or credentials" did you possess to select a surgeon?

Did you read StretchL's journal about how he selected Dr. Paul Stelzer (to perform the Ross Procedure he desired)?

How would you go about selecting a surgeon if your heart was damaged by Radiation? (and what kind of valve would you want under those circumstances)?

It's never an easy process.

It becomes a Chicken and Egg kind of thing.

If you have special needs or specific desires, it only makes sense (to me) to select a Surgeon with Experience in the Procedure you Need or Desire.

OR, you can go to the Surgeon your Cardio refers you to and accept whatever valve / procedure he happens to offer. At one time, our local surgeons only offered ONE Tissue Valve and ONE Mechanical Valve (Ross Procedure is NOT an option). Take your choice.

It comes down to making an Informed Decision
versus just 'doing what you are told'. It's your (anyone's)choice.

'AL Capshaw'

 

[ChouDoufu]

bad heart? can't happen to me. no way. i was jogging, working out, cycling,
hiking....never had any symptoms that i was aware of. had high cholesterol,
but that was kept in check with drugs. absolutely can't happen to me.

but then i went in for a routine cholesterol test, and the clinic doctor says
"everything looks ok. except for that murmur. but you knew about that, right?"

denial. can't be a murmur. dumb clinic doctor. he probably just heard my
tummy making juice noises. i can't have a murmur.....just a week ago i finished
a 1000-mile bicycle tour across the southwest, including death valley in july.

couple weeks later went to the local va clinic to renew my cholesterol meds,
saw the gp, and that idiot heard a murmur too. i'm thinking, i've gotta stop
going to doctors after lunch. these jerks can't distinguish digestion noises.

decided i've gotta prove him wrong, so i agreed to the three-hour drive to the
va hospital. got my prescription filled, then went in for the echo. i figured i was
right when the echo tech asks me if i have a prosthetic heart valve. jerk.
you see a scar? of course not. murmur, my butt. cardio tells me stuff about
stenosis and regurgitation, but i'm not really listening. the test is obviously flawed.
that just confirmed it can't happen to me.

they were saying stuff like don't do any exercise, don't exert myself. going to
need immediate surgery. yeah, right. based on my "prosthetic valve?" screw
that, i'm going home and go jogging. i didn't keel over. see, can't happen to me.
i did let them schedule me for a tee in albuquerque. i was delivering some things
to a friend there anyway, so we can prove the doctors wrong once and for all.

hadn't been to albuquerque for some time, so took the opportunity to go hiking.
time to do sandia peak. it's only a 5000-foot climb. i'll show them. made the
top in about three hours, so see, can't happen to me. went in for the tee the
next day.

they confirmed that the first echo was flawed. but they found the aortic valve
was so badly calcified that it appeared to be prosthetic. this time the doctor
actually explained all this stuff. regurgitation. stenosis. let me listen to the
murmur (it was a tee so i hadn't eaten), and look at the color gradients on the
echo display.

finally started to accept there was something wrong. BUT. it's not that bad, right?
he's talking about maybe replacement, maybe. when? 5-10 years. but that's
doctor-speak for "i gots no idea, but i better cover my butt." ok, it can happen to
me, but not really. just hypothetically, sometime in the future. yeah, we'll do the
annual echo thing. watch for symptoms. but i'll never really need surgery. right?

anyway, the doctor says i can continue doing what i'm doing. go ahead and run
marathons if i like, as long as it's not competitive. that was in '05.

over the next four years, echos showed worsening condition, although i was
generally asymptomatic. any symptoms i had could be assigned to something
else...lack of sleep, too much stress, getting older, etc. after every echo, i'd
always force the doctor to admit i could still exercise as much as i wanted.
even though i'd accepted i had a heart problem, i still was in denial that i'd
ever need to get it fixed.

i'm not sure when i came around to accepting i'd need surgery. it might have
been after all my online research and reading on the forums here. i think because
i decided when it had to be done, that made it easier. it was my decision and not
the surgeon's. he just confirmed MY diagnosis. somehow that made it better,
easier to accept. one set of doctors was saying i could still wait, whereas i decided
it was time.

made the arrangements to go to india for a thorough inspection, the results of
which would confirm the need for replacement. i'd already made my
diagnosis, so i was in control. makes a world of difference. even went jogging
the day before flying to india. i guess that's still denial.

it turned out i was correct, and the doctors were wrong! haha! take that
doctors! by the time i arrived in india, my EVA had shrunk to 0.6 sq.cm.,
which is about the size of a mcdonald's drinking straw.

in a way, i'm still in denial. throughout recovery, i've consistently done more
than the doctor's said was appropriate. i guess i still need to prove them
wrong, so i'll start cycling early, or walking farther, or jogging, before they
want me to.

what? take it easy or you'll set back your recovery? can't happen to me.
once in denial, forever in denial. it just takes a different form.

 

[Duff Man]

I try to stay in denial as much as possible. Every 6 months to 1 year, I'll briefly slip out of denial mode completely to get an MRI and/or an echo, but it's probably easier for me to otherwise have my head planted firmly up my a$$ or in the sand.

ChouDoufu is probably right about this site; it's hard to be in denial when you read the threads. I read the OP's accounts of being dizzy and fatigued and frankly it sounds too familiar for comfort. My cardiologist always asks me about my asthma... i doubt he's really thinking of asthma when he asks... probably looking for symptomatic valve stenosis.

 

[Bill B]

Interesting position, BUT, that begs the Question:

What criteria did you use to Pick your Surgeon?
(and Yes, I know you picked an Excellent Surgeon)

If you didn't "here have any of the education, training, experience or credentials to evaluate rigorously one brand/model versus another", what "education, training, experience or credentials" did you possess to select a surgeon?

Did you read StretchL's journal about how he selected Dr. Paul Stelzer (to perform the Ross Procedure he desired)?

How would you go about selecting a surgeon if your heart was damaged by Radiation? (and what kind of valve would you want under those circumstances)?

It's never an easy process.

It becomes a Chicken and Egg kind of thing.

If you have special needs or specific desires, it only makes sense (to me) to select a Surgeon with Experience in the Procedure you Need or Desire.

OR, you can go to the Surgeon your Cardio refers you to and accept whatever valve / procedure he happens to offer. At one time, our local surgeons only offered ONE Tissue Valve and ONE Mechanical Valve (Ross Procedure is NOT an option). Take your choice.

It comes down to making an Informed Decision
versus just 'doing what you are told'. It's your (anyone's)choice.

'AL Capshaw'

AL, you seem to be making my point. There is enough work involved with just picking the surgeon. Few of us here could complete the process you outline.

Trying to sort through whether the On-X claims of superiority are really true on my own proved frustrating. THE DATA IS LARGELY NOT THERE. Most of it is "data on file" rather than published trials that have been peer-reviewed. You can get that data, but it is raw and almost impossible to analyze. Studies about thrombogenicity are conflicting. Other claims have essentially no data. And that is just one valve. Trying to determine which tissue valve had the best track record was a worse mess. Very incomplete data. Even the large trials of the SJM Biocor were woefully lacking in solid information. So many people died or had short follow-up that the results are based on actuarial projections rather than real people. It's a commonly accepted technique, but as the numbers decline the error gets very large. Trying to compare this to the Edwards Feestyle was frustrating. Also, the literature on the unusual failure mode of the Freestyle valve made this more complicated. I have a reprint folder about 6" thick of the studies that I reviewed, all marked up with notes, observations, unanswered questions and critical flaws.

I was trained to to evaluate drug and device trials (I have what's called a Pharm.D. degree (Doctor of Pharmacy)). I did post-doc work in infectious disease and antibiotic therapy that involved performing several clinical trials. I was involved in clinical trials when I worked in a university teaching hospital for 10 years and then in the drug industry for more than 20 years. In those years I read 10s of thousands of research papers. I reviewed in detail and presented analysis of thousands more at weekly academic conferences in the hospital. I learned that most of the literature does not answer the questions they say they do in a way that can lead you to a clear decision. You are quite likely to be lead in the wrong direction if you do not have the skill the ferret out the study flaws.

I tried like heck in this case to do it. I realized that I was handicapped not being a surgeon who had ever tried to insert on of these things. I did not appreciate that had I chosen the CE Freestyle, my surgeon would have had to do a far different operation than if he used the the SJM Master grafted and would have potentially left the aorta repair for the inevitable reop.

Anyway, picking the surgeon is more than enough work. Then I feel it's good to have some understanding of the hardware he wants to use and what he believes about other hardware. I spent a long time with my surgeon and his staff asking them why they used what they did and why they didn't use other valves that seemed better to me. I confronted them with what I saw in the literature. In the end I concluded the data were not strong enough to argue against my surgeon's choice, even if he had no competing published data. My surgeon was no dummy. His undergrad degree was in statistics, so his perspective on these studies was not just personal bias. In the end I wasted a whole lot of time proving my surgeon was right. Now, if you have a surgeon that seems rather naive about valve choice, then you have a real problem. But still, getting to the level where you can go toe-to-toe with them is way beyond most people.