What was your initial reaction to your diagnosis?

[DeuxofUs]

I think I am having a hard time processing my diagnosis. Don't get me wrong, I have accepted it but some days, I feel so depressed. Last night I just started crying and it's been since Feb 16th that I was told that I have BAV at 1.0.

When the cardio told me, I went into some weird shock and was crying so hard, I could barely drive home. I was devastated.

I was told not to do strenuous exercise but have stopped exercise altogether now. I am thinking of getting into Yoga.

On a good day I have always had depression and anxiety - THAT I know I was born with:rolleyes2: I have been on anti-depressents for awhile now but I feel like I am taking two steps backwards. I also feel like my self image has totally changed.

What was your initial reaction to your diagnosis?
What was it like the following few months afterwards?
How long did it take for to not think about it several times a day?

 

[Paleowoman]

My initial reaction in the consulting room when the cardiologist told me was nothing. I never react when I'm with doctors. I only wish I could because they always think I'm coping well. I'm envious of people who can cry in front of doctors. Out of the consulting room and on my own I immediately felt VERY scared and tearful. Since then I think about it EVERY day (four years now) and feel very anxious. I'm not on any meds for the anxiety - my doctor doesn't realise I'm anxious - I told him about the anxiety and not sleeping well, but I don't 'look' anxious - I look like I'm coping - I wish, in a way, I didn't look like that because I don't feel like I'm coping well. Maybe I am though.

I knew I had a murmur 32 years ago but echos weren't very accurate and they didn't know what it was, though they suspected it was BAV. I didn't see a cardiologist for 28 years, my GP didn't refer me. Then a gastroenterologist listening to my carotids suspected things were amiss and referred me to a cardiologist for re-appraisal of the murmur and the cardio confirmed it was BAV and I'm due to have surgery within the next two years.

Anne

 

[Jeff Edmonton]

You are correct, it is something very difficult to wrap your finger around.

I had known for a few years it was coming, I ignored it until I knew for sure it was going to happen within a few months.

When I knew, it was OMG! For me, I was the same age as my mother when she had her OHS and she never made it of the table! Fml.

It was then that I started to talk to people that had gone through OHS and survived. But I was still such a drama queen! There was no choice, had to have the surgery and I had to look at it as that, JUST ANOTHER SURGERY!

The surgery is over for me, one month now and I still think about it. It really was not as bad as I had imagined and I am recovering and moving forward. Life is easy, make choices and don't look back...easier said then done!

 

[CATDOG]

I was shocked at first. My doctor of 20 years always said I had a heart murmur, but never ever mentioned more than it made a noise and I should take antibiotics before a dental cleaning. I don't remember him ever even sending me for an echo--somebody else did.
I'm having a bit of trouble getting it out of my head (4 years now, but mostly just the last year that I have been thinking about it.) The other 2 docs I see regularly are all following the cardio who says I won't need to be doing anything any time soon, though the numbers on the echo look to be in the wrong part of the charts to me.
So no, I'm not really depressed, not overwhelmingly so. Sometimes a little depressed, sometimes worried, and some P.O.'d--lately more of the latter, and that's probably a good thing. I figure as long as I get my research done now anyway, I'm good, though maybe I'd be better just getting off the internet..?
So what am I saying? Do your research. Maybe you'll find something to set your mind at ease. And try to find something else to keep yourself busy--something fun that you can pamper yourself with--giving yourself a gift time for fun away from thinking about it (that's the rule, no thinking about it right then). Then I add a nibble of chocolate now and then too.

 

[esvaja]

Totally surprised & slackjawed. I had an heart echo referral in Oct 2009 by a very fresh, new young Dr to the practice. She said my heart murmur sounded loud, not LOUDER like my primary physician should have said. I never get a chance to see my primary because the clinic is closely assoc w/a teaching hospital & she is in charge of clinical medicine Ed for the med students.
They SAY she is in Mon & Weds. Why would you give a part-time Dr full-time pts? Anyway nobody called me with the results. In April of 2010 I was in for a gen"l physical and I asked her about 3 areas of concern, the last was "Hey? how about that heart echo?" She said she'd check (we are paperless & on computer) Then she told me flat out that I had severe aortic stenosis, looked pissed & said I have to make an appt with a cardiologist ASAP. After the surgery I will look for a new primary.
This is where the shocked & slackjawed came in and I now knew why I had been feeling the ways I'd been. The Doc had assumed that my fatigue, pains in my back were made up I guess. Be very glad (when you are able) that were diagnosed timely, had a chance to feel a little more in control of your options. I ended up in the hospital w/SOB, angina - probably from stress and having to fend off surgeons who wanted to COMMIT OHS AVR NOW. I had the hardest time trying to get a 2nd opinion (they felt since I worked for the hospital why would I even THINK of going anywhere else). They wouldn't help me override my insurance which didn't allow out of system referrals. The whole time being told I could have a syncope. I had to change my ins @ election time in Oct2010 effective Jan2011 to get the 2nd opinion & promptly went to Cleveland 1/11/11 (isn't that cute?) where I made my decision to have the surgery done there & asked for Dr Pettersson.

Most of the summer I spent talking to a shrink to keep me from going off the edge & be able to keep working, furious, depressed, sleepless scared poopless. Many meds later I now vacillate between denial, eager & anxious. I am now pretty much resigned for next week's surgery.

Jeff during my 2 hospitalizations last year I think you & I would have gone head to head for the Drama Queen title, eh?

Daiva

 

[Bina]

I had known about my murmur for years but figured I would very old before I needed surgery.
When I was in my 40s and my cardio told me that I needed surgery I literally almost fainted and had to lie down.
Drove myself home and when hubby asked me how my appt went I started to cry.
After that came denial for a couple of YEARS until I was in serious trouble and had it done.
Can't seem to shake the anxiety from it all. Oh well, c'est la vie.

 

[OldManEmu]

What was your initial reaction to your diagnosis?

After having endocarditis for 9 months at least I now knew what was wrong with me. I thought now the worse pain I could visualise possible was in my near future. (It wasn’t near as painful as I imagined.)

What was it like the following few months afterwards?

I was OK, just increasingly concerned about the pain of surgery.

How long did it take for to not think about it several times a day?

I think about my heart most days, I am now a heart patient for life, there is no escaping this fact.

 

[kfay]

My story is a little different in that I was born with a congenital heart defect that required many hospitalizations throughout my youth. However, I had my first surgery when I was 17, and like a lot of adult congenital patients, I thought I was "fixed" and never really realized that other surgeries would be a part of my future. So, I went through my 20's and 30's, happily living my life, visiting my cardio, sometimes yearly, sometimes more frequently if I were having problems, sometimes less frequently if I weren't. Then, when I hit 45, I breezed in for my yearly check up, I about fell off the chair when my Dr. told me he thought it was time for me to start thinking about having surgery again. I really almost started laughing because I honestly thought he was kidding!
In the days and weeks and months that followed, I, of course, managed to work myself up into a frenzy. I then spent my time finding the best surgeon I could for my condition. Once I knew when my date was, I spent most of my time getting my kids and home ready for me to be gone for 2 weeks.
I'm now 3 years post op from this second surgery, and I don't know if I can honestly say that there isn't a time each day that it doesn't cross my mind. If I weren't left with some rhythm issues that I feel everyday, I'm not sure that this would be the case. I went years and years after my first surgery and never gave my heart a second thought. I hope that someday I will get back there again.

Kim

 

[Bean Counter]

They discovered mine by accident, so I was shocked since I was not having any symptoms. The heard a murmur for the first time during a routine physical. This physical was a few days after I completed a marathon, so perhaps that made it more noticeable. Since I was asymptomatic, and my condition was not that bad yet, he told me I could continue with racing. Within a year it got bad enough that he put me on running restrictions and would not let me race anymore. That was a hard pill to swallow, especially since it was 3 weeks prior to the 2009 Chicago marathon and I was ready for it. Over the next 7 months, my condition worsened and I had surgery on June 21st, 2010.

When i first found out I had this, I was holding out hope that it would not get worse. Once it did get worse, it took me a while accept that reality. The timing could not have been worse as I also found out that my job was being eliminated due to our company being acquired. I actually asked him if I could do the surgery sooner than later. Unfortunately it was in that gray area where it was bad enough that I could not run like I wanted, but not bad enough for surgery yet.

How long did it take me to forget about it? I thought about it everyday. I continued to run (my restrictions were nothing hard and nothing longer than 10 miles) and alway wondered what was going on inside my ticker.

I am a little over 9 months post op and have pretty much resumed my normal running lifestyle. I am not quite where I was before surgery, but I figure in a few more months I might be there. I have since run 2 half marathons and am running my first post-op full marathon in October.

I found what helped me is focusing on the things that I could do.

 

[drivetopless]

14 years ago my heart murmur was diagnosed as "something." I went and had an echo with my soon to be cardiologist's office on my Primary's recommendation. The cardiolgist called me on the road with the results, which freaked me out. He told me I had Aortic Stenosis caused by BAV and that I would need likely need surgery within 5 years.

I was freaked out and proceeded to have chest pains and SOB (i.e. anxiety) for a good month. I became hypersensitive to every little feeling in my body, especially twinges in chest area.

After a year or two of ultrasounds where the AS did not change, I started to relax and those symptoms went away. However, the few weeks leading up to my annual echos were always more symptomatic.

I can say that not one day has gone by since diagnosis where I didn't think about it. Some days it was just a fleeting thought, but still there. It definitely becomes a part of your identity, not necessarily in a bad way. Since diagnosis, I have taken trips and/or spent time with people that would have been put off before diagnosis. Gives you perspective on what is important, for sure.

 

[scott.eitman]

in 1988, I said "Murmur, I do NOT have a murmur". By 1998, I knew I needed surgery, so I was ready.

In 2008, I said, "You are wrong" and my Cardio agreed. In 2010, my Cardio spent an our building the case, so that I said "You are telling me I need surgery?" I was still in denial, but he was right and I knew it.

As for being consumed: HECK YEAH you are consumed. This is pretty major and life changing stuff. Roll with it, as it is a pretty scary and amazing ride. Before making a decision on which valve to get, I was consumed. I am amazed that I was able to get my job done. But I did.

What is it like not to think about it a couple times a day. I could not tell you. I have not had that opportunity yet. I did after my 1st surgery. I felt so great and was able to do so many things, that I only thought about it when I realized that I should not be able to do certain things.

 

[epstns]

When my murmur was found in a routine physical, I wasn DEVASTATED. My only symptoms to that point were steadily decreasing exercise tolerance (I was a runner/jogger) and fatigue. For the next couple of months I dwelled on the issue and found this site. I learned all I could and realized that I was not yet ready for surgery. I actually had over 9 years to consider surgery, so I became rather calm about it. When I finally decided it was time for surgery, I was organized and calm. That's a good thing because I had a rough time in surgery/recovery and am now recovering a bit more slowly than I had imagined. I am getting better, though, so as long as you make it off the table, things will settle down and improve. Normal may never be the same, but life will be good.

Don't give up. We're here for you.

 

[buffhughes]

I've had a murmur since I was a kid but was always told it was "innocent".
Went to get my meds renewed in January and my new primary listened to my heart and said that he wanted to do an echo and echo stress. The echo was on a Tuesday and the echo stress was scheduled for a Wednesday. They did the echo as scheduled but called Wednesday morning before we left the house and told me that I was not to take the stress test and that I had to see a cardiologist right away.

I was dumbfounded and scared; they set up the appointment with the cardio for the next day - waiting was torture. When I went in he said that he estimated the opening at 1cm2 and flatly said that I would need valve surgery in a 1-2 years. I was stunned and shocked. When I got home I immediately began researching and found all the nice folks here. 1-2 years seemed like enough time to get my head wrapped around it.

Since then I have spent most free time looking up papers on surgery, on here or just pondering the eventuality. I cant think of a day since January that at least a few times I havent stopped and thought about it.

I had a follow up TEE and cath that refined the valve area estimate - downwards - to 0.6cm2 and am now scheduled for surgery on 18 April. I used to spend lots of time at the gym and working in the yard but now I feel every twinge and wonder if its my heart or something else related to it. It feels like it has consumed my life and looms behind every thought and plan.

The folks here have helped a lot in understanding the procedure and the recovery and reading their stories have provided lots of insight on what I will face. We are still reeling from it but we now know there is a path forward and at least for us it has been very short. I cannot imagine what it would be like to wait years knowing without being able to fix it.

 

[Bean Counter]

I think it is worth noting that a lot of my time "thinking about it" consisted of doing research on this site and asking questions. The amount of information I picked up from this site definitely put me at ease.

 

[nngbwh]

2009 I went for my annual check up and my primary doc tells me I have a heart murmur. I went for echo the same day and found that I had a bi-cuspid valve and
and 6.7cm ascending aortic aneurysm. I was shocked and scared when I heard this. That day I seen a cardiologist she recommended a highly skill surgeon at BWH.
When I got home, I told my wife. She was scared. I saw the surgeon the next day. He agreed that surgery is ASAP. He said I am busy but I will make time for your surgery. I asked him if I was going to die. I was totally freaking out and scared shitless at this point. He ordered a CT scan and stress test for the following week.
Friday I went for a CT scan doc discovered I have a aortic dissection.The doc told me I can not leave the hospital. After a long discussion I told them that, I will be back on Sunday. I feel like it's the end of the world for me. You will be O.K. You have us here to support you. I didn't get a chances to research. My surgery happened too quick. You have time to research. You found this wonderful site. You will be fine.

 

[catwoman]

Deux:

You're going through what many of us went through -- shock, disbelief, etc.
I thought that I was having a nightmare and would wake up and find out that everything was back to normal again.
The day I was told I needed MV surgery, I had told my husband he didn't need to go to the cardio with me. After leaving the Dr's office, I went to my car and called my husband and then a friend in California and just bawled on the phone. Didn't tell my parents for several days.
I had known for 13 years that I had MVP. But since I was told that most people never have a problelm, I thought I was one of them. :rolleyes2: Well, for all those "most people," there has to be "some people" who do. So I became one of those.

 

[Freddie]

I was totally dumbfounded! I was in the highest state of denial anyone could get. I was positive that when the surgeon looked at my file again (in the OR) he would notice his misdiagnoses. Of course I was wrong and the first time I noticed my stitches the first thought that came to my head was, "crap, he did do it".

Keep in mind that I was put on the "waiting list" on a Monday and on Thursday of that same week was called into pre-op with surgery the next day, being Friday. All said and done in 5 days.

 

[Bryan B]

I was diagnosed with a heart murmur and a large VSD when I was 2 weeks old. My mom told me that they were planning to do surgery as soon as I reached 30 pounds, but I was so small that by the time I reached 30 pounds they did a cath and decided to wait. At that time the survival rate from OHS was about 50% (I was born in 1960). I have lived with it all of my life. Cath at 10 yrs old to see if they were going to do surgery and decided no. New aortic valve problem at 17, another cath, again decided no. I finally had the VSD repaired and a Ross Procedure during my first surgery in 2004 (had my 2nd surgery just under 5 weeks ago).

If you are talking about the diagnosis that I needed surgery...the first time it hit me hard and I can't say the words on this forum that I thought after I got the diagnosis. I knew the 2nd surgery was coming so the anger and cuss words came 1.5 years before the actual surgery. That has probably made the 2nd surgery easier because I had such a long time to come to grips with it.

Great question though. For some people that knew it was coming for awhile it was probably easier to deal with. For others that didn't have symptoms and found out about it suddenly it was probably a complete shock and difficult to deal with. There are probably a lot of people that fit in the "in between" category that didn't know if or when it would happen but probably knew it might happen one day...still probably not easy to deal with when they got the news. But in my experience...even though I knew this last one was coming for a long time, once I qualified for medical assistance and my surgeon's CT scan showed my aortic root at 5.8cm (6cm when he actually opened me up) it still was somewhat of a shock to the system. Once they give you a surgery date it becomes very "real" and it becomes hard not to think about it...a lot...until that day comes. It actually gets easier after the surgery than it is in the weeks, months or even years before the surgery.

 

[Bryan B]

I think I am having a hard time processing my diagnosis. Don't get me wrong, I have accepted it but some days, I feel so depressed. Last night I just started crying and it's been since Feb 16th that I was told that I have BAV at 1.0.

When the cardio told me, I went into some weird shock and was crying so hard, I could barely drive home. I was devastated.

I was told not to do strenuous exercise but have stopped exercise altogether now. I am thinking of getting into Yoga.

On a good day I have always had depression and anxiety - THAT I know I was born with:rolleyes2: I have been on anti-depressents for awhile now but I feel like I am taking two steps backwards. I also feel like my self image has totally changed.

What was your initial reaction to your diagnosis?
What was it like the following few months afterwards?
How long did it take for to not think about it several times a day?

Sorry to post twice in a row but i wanted to comment on a couple of other things you mentioned. I will highlight and underline those things. I think I covered the initial reaction and few months afterwards. As far as how long it took to not think about it several times a day...it took until after the surgery...anyone who has had surgery disagree with this?

As far as anxiety and depression I have suffered from it for several years and it doesn't help matters after the news that you are going to need surgery. You need to talk to whoever treats you for this and tell them what is going on and how you feel about it. When I got the news about my first surgery I barely made it to my car (tough guy lol), then I burst out crying for about 10 minutes...runny nose and all . I had to wait awhile to compose myself so I could drive home. I talked with the doc that took care of my anxiety/depression and he adjusted (i.e. upped my meds) to make things more manageable while I was waiting for surgery.

 

[skeptic49]

This is an interesting thread because it reveals a wide range of experiences with valvular heart disease. I'm another one in the category of knowing since childhood that I had an "innocent" heart murmur (is there such a thing?) It wasn't until age 55 that I had my first echo (in the cardio's office) that was ordered before a routine colonoscopy. Then I found out that I had moderate AS. That didn't bother me much. But four years later when I began to notice a loss of exercise tolerance I went to a university heart center for an echo. Then I found out that I was BAV with an aneurysm. That shocked me more, especially when I learned from a surgeon that I wasn't ripe for surgery. It really bothers me that I have this congenital heart problem hanging over me and I can't get it fixed now. I'm an active guy and kind of a bull type, you know, push the car to get it started, shovel snow all the time, etc. So I want to stay healty. But no, I have to wait until I get weaker and sicker or worse, dissect. So I don't know what's worse, really: finding out all of a sudden that you need surgery ASAP, or lingering on coping with a slow progression of the disease for years and years, trying to lead a normal life but you really can't, and not knowing when you might finally get the surgery you need, or keel over or blow a gasket first. There is no pleasant way for any of us.

Jim