For Those In The Waiting Room: BAV Disease Progresion

[skeptic49]

Just had an echo. It had been 18 months since my last one. For those in the waiting room here are my numbers over the last six years for comparison. It is interesting how BAV disease progresses differently in different people. I'll be 65 in January. I was first diagnosed 10 years ago. I've had a pretty good run, but the numbers do reflect a slow progression of the disease. How much longer do I have before the onset of the "classic" symptoms? I need a crystal ball!

2008 gradients: 22/36 mmhg
2009 gradients: 16/27 mmhg
2011 gradients: 25/40 mmhg
2012 gradients: 23/39 mmhg
2013 gradients: 34/53 mmhg

2008 AVA: 1.3 cm2
2009 AVA: 1.2 cm2
2011 AVA: 1.1 cm2
2012 AVA: 1.3 cm2
2013 AVA: 0.8 cm2

 

[DebbyA]

Wouldn't we all love that crystal ball?

My gradients over a similar period of time were:
2001 gradients: 22/40 mmhg
2003 gradients: 20/38 mmhg
2004 gradients: 24/43 mmhg
2005 gradients: 20/42 mmhg
2006 gradients: 33/62 mmhg
2007 gradients: 43/70 mmhg

Sorry I don't have AVA numbers. My doc seemed to focus on gradients. It probably appears on the reports under various acronyms because of software changes.

What did your cardio say?

It was the appearance of left ventricular hypertrophy (LVH) that prompted the surgery. By that time I was very tired all the time, and having some angina with exercise or stress. I probably should have had the surgery 6 months before I did.

 

[ottagal]

How are you feeling these days? Ah yes...the crystal ball to know what the classic symptoms are.

Did they also take a measurement of the aneurysm or is it still the same?

Wishing you all the very best! When do you see your cardiologist to discuss the results?

 

[skeptic49]

Thanks for the replies. Debby, your gradient numbers are interesting. My cardio also seems to focus on the gradients. We had a chat and so we'll watch and wait unless/until symptoms appear...next echo in 12 months. The aortic dilation is about the same...around 4.2 cm, and I feel pretty good, just not as energetic as before. I really need those mid-day naps but I'm still walking three or four miles a day, just no energy reserves at all. Everyone is different.

 

[Bina]

Thanks for the replies. Debby, your gradient numbers are interesting. My cardio also seems to focus on the gradients. We had a chat and so we'll watch and wait unless/until symptoms appear...next echo in 12 months. The aortic dilation is about the same...around 4.2 cm, and I feel pretty good, just not as energetic as before. I really need those mid-day naps but I'm still walking three or four miles a day, just no energy reserves at all. Everyone is different.

Jim, nice to see you !
With those numbers I was at my cardio dude every 3 mths, but i also had chest pain with the physical work of cleaning out my barn. My breathing was becoming increasingly
restricted (I wasn't realizing it since it was so gradual). It was only after surgery that I thought, "Wow, I can breathe so easily."
If I were you I wouldn't wait another year for the next echo. Things can change quite quickly and you ain't getting any younger.

 

[Agian]

Thanks for uploading your numbers. Believe it or not it's reassuring; although I don't know why.

I'm sitting on an AVA of 1.1cm, a gradient of 30 and an ascencing aorta of 4.0 to 4.1cm.

 

[big_L]

Interesting. My AVA was similar to yours, but higher gradients (~65). I had AVR three months ago, with 3 doctors telling me that it was time.

 

[skeptic49]

HI Bina...great to see you too! Yes, I know what you're saying about the numbers, and I'm keenly aware of the old adage around here "the worse things get, the faster things get worse." Luckily I'm in a big city with my cardio at a major university hospital just ten minutes from my house, and my surgeon of choice at another major university hospital also 10 minutes from my house. So not to worry, I'm on top of it and I'll be at their door the minute I feel anything getting significantly worse. I have no chest pain, shortness of breath, etc., none of the classic symptoms of severe stenosis....yet.

For "Agian," I'm glad you are reassured. There are no guarantees, but you have a way to go I think.

Jim

 

[epstns]

Jim, you old skeptic!

I'd say stay near your docs - things may stay stable for a while, and then again they may not. By the time my valve was that "tight" I was doing echo's twice a year too. I understand the doc's focus on gradient, as that is the statistic that shows how the decreasing valve area affects you, the individual patient. It makes sense, but don't forget that when they do echo's, all of these measurements are calculated/extrapolated from doppler measurements of the sound of the blood flow through the heart. The calculations are based upon typical heart structures, etc., and are still just approximations.

So, keep a sharp eye out for the cardinal symptoms (you know them - SOB, fainting, chest pain) and enjoy life until it is time to take time off and fix it. Just don't ignore any symptoms or wait too long.

 

[AZ Don]

Thanks for posting, helps me understand what to pay attention to on my echo reports.

 

[Agian]

Hey Skeptic, I think it's great that you haven't needed AVR before 65. It's makes your choices so much easier.

 

[skeptic49]

Well, I suppose. However, there are some caveats. As far as which type of valve to go with for AVR, I have read some reports (Mayo) that indicate that long term, patients live longer with mechanical valves, and this even applies to older patients. Secondly, I personally feel that having to undergo AVR at a later age may be tougher on the patient, and recovery might take longer and be more difficult. You bounce back better from physical trauma when you're younger because you're stronger.

 

[Agian]

I'm far from decided, but I like to get things over and done with. This is because I get anxious with uncertainty. I'd feel like I'm in control with Warfarin, rather than obsessionally fretting over developments in valve technology. That may change however, within the next few years. By the time you and I are due, it may be that valve-in-valve is a goer.

Medtronic is doing a trial as we speak. Their contraption places the valve in the 'super annular' position, avoiding the potential asymmetry of the annulus itself. This means the leaflets close nicely. You could get 20 years minimum with the available technology NOW. But of course trials can take some years.

Let's say they put a stented tissue valve in someone of 65. It lasts 10 years, then they put the Medtronic contraption in. The cage takes a mm off the annular diameter. The old valve is collapsed and the new one sits higher. The big question is: Will the collapsible valve that's threaded through the groin last as long as the current standard tissue valve?

I think it will be standard practice within 10 - 15 years.

I'm going in for a pfo repair on Friday. I'll be out on Saturday and back at work on Monday. They'll be inserting a patch via a groin vein. In 1998, a primitive version of this was gradually being introduced (15 years ago), whilst most people would have needed the full monty.

 

[Paleowoman]

Hi,

I just found your thread - been pre-occupied the last few days getting things finalised for my surgery in January. My valve area size is 0.9 and pressure gradient gone from 62 mm/Hg to 68 mm/Hg in just over a month…but no signs of left ventricular failure or hypertrophy and no symptoms. They still want me to go ahead with surgery now. I'm just 60 and I think you are very fortunate to be still going with your own valve at 65. I had always hoped to wait till then as the time is then closer to when I would need the replacement replaced as I'm going for tissue - having another OHS at around 72 to 75 doesn't thrill me but I'm not going for mechanical. When are you having your next echo ? Btw, I made a graph on my computer of my increases in pressure gradient and added the new co-ordinates over the years as it's good to see in graph form how the gradient is rising.

 

[Duffey]

Hi, Jim. I was out of town when you started the thread so I'm late to the party. I'm surprised that the cardiologist is waiting a year before having you back for the echo. Your current 3-4 miles of walking doesn't give you a free pass. Too many members have reported the same right up until the day of replacement. I think the need for the naps and the lack of energy reserves is more telling. Have you had a recent visit with your surgeon?

 

[skeptic49]

Mary and Anne, Thanks for your comments and concern. Perhaps a year is too long to wait for my next echo, but I do have confidence in my cardiologist. Anne, I think you are doing the right thing to proceed with surgery even though you are asymptomatic. Your numbers are clearly in the severe range. Everyone is different when it comes to the way we respond to AV disease. Mary, I haven't met with a surgeon in a few years. What I plan to do is very carefully monitor my own condition and get back in contact with my cardio the minute I feel anything has changed.

 

[Duffey]

Mary and Anne, Thanks for your comments and concern. Perhaps a year is too long to wait for my next echo, but I do have confidence in my cardiologist. Anne, I think you are doing the right thing to proceed with surgery even though you are asymptomatic. Your numbers are clearly in the severe range. Everyone is different when it comes to the way we respond to AV disease. Mary, I haven't met with a surgeon in a few years. What I plan to do is very carefully monitor my own condition and get back in contact with my cardio the minute I feel anything has changed.

Ok, but then you have to promise to post more often so we can keep track of what's going on and offer advice, asked for or not!, as needed!