My Aortic Stenosis Story.

[Julian]

Greetings to all. My name is Julian. I've had a bicuspid aortic valve since birth with stenosis. My parents told me the doctors said my valve was at 60% of what it should be (whatever that means). They were told not to let me exert myself too much and let them know if I wanted to start any serious sports. From what I can tell at that age I had no symptoms. I had yearly follow ups until I was 12 years old, at that point I got stubborn and stopped going to the doctors, I felt fine and I was tired of the doctor telling me I was a fat kid and should lose weight.

I entered high school and starting smoking cannabis everyday for several years. Got a girlfriend and was with her for several years. In my late teens early 20's started to experiment with methamphetamine. I wasn't addicted but would do it once in a great while. Until about 6 years ago I had a very bad "trip" with it and it put me into serious anxiety and depression for over a year. It was hard to leave the house. Terrible experience wouldn't wish it on anyone.

At this point my heart issue was in back of my mind but I totally thought the problem corrected itself. I didn't understand the severity of the condition. I didn't understand the importance of follow ups. I went on about my life and started to work out at a gym with a friend in 2006. I felt good at the work outs accept for when we would do squats. For some reason those just made me feel strange after, can't explain it. I started to think about my heart again. The strange feeling would just go away after a couple of hours so who cares right?

Eventually I stopped working out and went on about my life. Fast forward to July 2009. I came home after a day at work, it was super hot and we have a treadmill in the garage. The night before I had drank a little too much so I was probably dehydrated. At this time I was also 50 pounds over weight. Got on the treadmill felt pretty good the first 10 minutes, I decided to pump it up and see how much I can push. I brought the incline up as far as it would go and brought the speed up to 6 or 7 mph. I was pushing that for about 3 minutes until I started to get really SOB. I slowed it down and brought the incline down but was still unable to recover. So I decided to bail off the treadmill and head for the door. Didn't make it to the door, fainted. Mom came out because she heard the fall and helped me to the living room where I collapsed again.

This freaked me out. I decided to make an appointment to get a full check up. Cardiologist did and echo and found that my valve was 1.0cm to .9cm. He told me it was time to cut soon. I was shocked. He ordered a stress test to confirm. I didn't feel too symptomatic. I couldn't believe it. a few weeks later sometime in November 2009 we did the stress test and even though I completed it and didn't have symptoms he noted that my blood pressure didn't rise and suggested I stop all exercise and talk to a surgeon. At this point I started to feel more fatigued and seemed to get different sensations in my chest throughout the day. I would also notice some SOB, most the time it felt like I couldn't take a full satisfying breath.

The bad news is I didn't have insurance at this time :eek2: Fast forward to August 2010 over a year since I fainted. The symptoms seem to be getting worse. My cardiologist suggest that I go to county Harbor UCLA to started the process of getting the surgery done there. So I did, they did two echos, one performed by a cardiologist and another performed by an experienced tech. Both came out with a valve area of 1.4cm maybe even 1.6cm. Why the fainting doc? Why the SOB at rest? Why the uncomfortable feelings in my chest? Cardio says maybe anxiety, probably all in my head. He confirmed that at this point I'm not a candidate for valve replacement and that my images were crystal clear.

The doctor even said I could begin to exercise again! Just to take it easy and don't do anything extreme. He noted I would eventually need surgery but now is not the time. WOW! what a relief. About a month later I got a new job with insurance and was still feeling like crap but chalked it up to stress and worry.

Fast forward to April 2011 nearly two years since I've fainted. Symptoms seem to be getting worse. Decided to go to cardiologist to get follow up. The same cardiologist that told me I originally needed surgery. We eventually got around to doing a TEE last week which showed a valve area of .9cm and a gradient of 64 and aorta mildly dilated at 4.1cm. At this point the doctor said no more driving or working you are done. Start talking to surgeons. :eek2: :frown2:

So at home for the last week, and I feel so bored! I have my first consults with surgeons this week. I just want to get this over with. The symptoms suck, I feel like its hard to breath even while sitting and watching TV sometimes. Been noticing getting dizzy when standing up. Various chest and back pain come and go, I get a lot of palpitations, sometimes I get slight tingling in my hands. Don't know if the valve is completely to blame for symptoms or not. I'm sure worry and stress don't make it any better. I'm just taking it one minute at a time.

Sorry for the novel just wanted to share my story.

 

[Bina]

hello and welcome. I'm another aortic stenosis BAV person....and yes, living a young life in the fast, fun lane is
only going to kill you faster. So take your symptoms as a warning and calm down. I know very well the denial of
feeling dizzy occasionally, chest tightness, and breathing restrictions but at least by age 40 my cardio was
following me very closely and I eventually got the AVR done.
Oh, and a couple of months before my surgery another cardio did an echo and revoked my driving privileges until
after my OHS. No point endangering others on the road.
It is very boring and stressful waiting for surgery, been there--done that. Hang in there.

 

[mamalu]

Wow, Julian. That's quite a story! As a child of the '60s, I did my fair share of partying through the years; I just didn't know that I had a heart valve problem. I'm fairly new to this forum - lurking since April 2011 when I first suspected that surgery was on the horizon. I'm 17 days post-op now, and doing well.

I understand the denial and the anxiety that you've been experiencing. I'm overweight, too, and in fact, it was partly because of the fact that my attempts at exercise were not building stamina, but rather depleting stamina, that I went to the doc this year. My condition was diagnosed in 2005, although the rheumatic fever that caused the aortic stenosis most likely happened early in childhood. In previous years, I used to pass out pretty easily - too hot out, weird smells, winning a dart tournament, no reason at all - and it was back in 2005 that I learned that doesn't happen to everybody! Who knew? I had made a casual remark about it to my internist, who said, "People don't just pass out! You have a heart murmur, and you need to see a cardiologist." Surprise, surprise. And by this year when I finally had the surgery, the opening was down to 0.6cm. It was seriously time, and I am happy to be on the road to recovery.

So it looks like you will soon be on that road with me. Take good care of yourself during this time. I know waiting sucks, but use your time well, reading up on the procedure and the options available to you, choose your doctor and hospital with care, do your best to be an informed patient, and be ready to start coming back to a better life after surgery. You may surprise yourself. That's what I'm hoping for, anyway. You've found the best forum here. People here are smart and their experiences are varied and here you will find the most amazing supportive bunch of people you could hope to find.

Good luck to you and keep us posted.

Mary Lou

 

[Greg a]

hello and welcome. I'm another aortic stenosis BAV person....and yes, living a young life in the fast, fun lane is
only going to kill you faster. So take your symptoms as a warning and calm down. I know very well the denial of
feeling dizzy occasionally, chest tightness, and breathing restrictions but at least by age 40 my cardio was
following me very closely and I eventually got the AVR done.
Oh, and a couple of months before my surgery another cardio did an echo and revoked my driving privileges until
after my OHS. No point endangering others on the road.
It is very boring and stressful waiting for surgery, been there--done that. Hang in there.

You are 28 and havea LOT to live for and I think you are a prime example of GET 'er done sooner rather than later

waiting is the WORST part

Keep the forum posted as you step along and WELCOME TO THE FAMILY

 

[skeptic49]

Welcome to the site, Julian. Your story is interesting. Yes, it appears that it's time for your surgery. You should do fine.

Best wishes,

Jim

 

[nngbwh]

Wow, Julian. That's quite a story. Good luck and make sure you are keeping us posted.

 

[Superbob]

Thanks for sharing your story. I'm another stenosis/BAV type, but my time for surgery didn't come til I hit my 60s -- we're all different. Got to do what's necessary when the time comes, and then move on with our lives. Life has been good for me since I had my root/valve replacement in '05, and I bet it will be for you, too. Sending all good thoughts and vibes as you move forward.

 

[Jason]

I had BAV and subsequently aortic valve replacement and repair of an aneurysm. In my case I had no symptoms prior to the surgery, but on an echo it was found that my aorta had jumped to 5.4 cm in a year and it was time. Keep us in the loop as far as your progress!