Those with aortic regurgitation

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beneficii

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Apr 19, 2016
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6
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Sacramento, CA
I see a lot about people with aortic stenosis, but I don't see a lot about those like me with aortic regurgitation. For those who've had regurgitation, what is your experience?
 

Ryan CA

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May 24, 2013
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93
Location
Alta Loma, CA
I think many of the people you see discussing Aortic Stenosis and/or Bi-cuspid valves actually do have regurgitation, its just not discussed as the primary issue because it is typically a result of the stenosis and bicuspid valve. I had Aortic Stenosis and a mono-cusp valve as a little kid but didn't begin developing much regurgitation until i was in my early thirties. Just prior to the time of my surgery, it went from moderate to moderate/severe due the valve deteriorating. As the valve deteriorates, it loses the ability to create an adequate seal.....thus the regurgitation. The resulting inefficiency of the heart is one of the main culprits in developing symptoms.

As my regurgitation worsened, I really started noticing symptoms in the form of extreme fatigue after physical activity, shortness of while breath going up stairs, moving heavy objects, ETC. The increased regurgitation and the symptoms that came with it was a large part of what let me know it was time to get it fixed. I would go on bike rides that had been fairly easy in the past, but when I would finish the ride, I would be stuck on the couch, exhausted for hours. Luckily, regurgitation is really easily monitored with your yearly echos and the cardiologist can tell whats going on, often long before you become symptomatic.

Now, almost two years after getting fixed, regurgitation is almost zero ( some regurgitation is always present in both healthy valves and replacement valves) and I am back to how I felt 20 years ago.
 

Ryanvs

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Jan 10, 2016
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113
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Newcastle, New South Wales, Australia
I had a switch procedure at 2 weeks of age in 1985, and as far as I knew I didn't have any issues until early last year.

It started just after I turned 30. I Had episodes of palpitations/atril fibrillation that lasted anywhere from half an hour to a few hours in length, the longest I recorded being around 6 hours. These occured initially once every 3 weeks or so then became a weekly occurance. I've always been reasonably fit, lifted weights and was confused why this was happening but being stubborn i tried to ignore it. I was never short of breath or in pain, and my only issue was the palpitations & AF.

In November last year i finally made an appointment to see my dr for a referral to see a cardiologist. As fate would have it, a few days later after a bad AF episode I collapsed & passed out momentarily and my wife called an ambulance. I was admitted to hospital and after a few hours they got my heart into sinus rhythm. I spent two nights in for observations, xrays and an echo. Two weeks after discharge I saw my cardiologist who performed a transesophageal echo and arranged for a CT scan with an iodine injection. I had all my tests completed pre Christmas 2015 and met my surgeon in February 2016 and operated on in April.

Pre surgery I was on xarelto to thin my blood and initially metoprolol. As this wasn't enough to combat my AF i was put on sotalol.

Post opp, on Warfarin and still sotalol daily.
 

cldlhd

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Apr 9, 2014
Messages
1,279
Location
Levittown ,Pa 19054
I had mild regurgitation and no stenosis. I had the leak repaired , although that wasn't the cause for surgery- that was the aneurysm, and at my one year echo there's zero leakage.
 

Lisa2

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Jan 25, 2010
Messages
158
Location
Seminole, AL
Hi, beneficii. I had a stenosed and regurgitating bicuspid aortic valve prior to valve replacement surgery in 2004. I chose a homograft and I have another surgery in my future. My aortic valve is moderately leaking and the other 3 valves have a mild leak. I was very sick prior to my valve replacement. I slept a lot. A lot. I didn't and couldn't do much of anything. Did I mention that I slept a lot? 😀 I didn't know just how sick I was until after the surgery. I felt tremendously better right away - it was like someone flipped the light switch on! Do you have a specific question we can try to answer?
 

T in YVR

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Feb 22, 2013
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241
Location
North Vancouver, BC, Canada
You don't say anything about your age or condition etc, but many people here have had regurg. including myself. With rergurg, too much blood is basically going the wrong way! I was diagnosed as "moderate to severe" and had a moderately enlarged left ventricle @ 66mm (>72mm is severe and a dangerous zone to be in). Totally asymptomatic....It has taken about 2.5 years but my LV finally hit a high normal range for me of 57mm when I had an echo in Feb/16. I am still on Coversyl and Metoprolol to help my heart recover and regain as much of it's normal size as possible. I may be on them forever - TBD. With regurg, the LV size is a big factor they watch I believe.

Note that even after AVR, some regurg is completely normal. I was outfitted withe On-X valve and it is designed to provide some backwash across the valve to help mitigate the chance of clots forming. On every echo I have had they still see some signs of "trivial" regurg which is completely normal.

Tony
 

MethodAir

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Apr 27, 2015
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Canada
T in YVR;n865422 said:
It has taken about 2.5 years but my LV finally hit a high normal range for me of 57mm when I had an echo in Feb/16. I am still on Coversyl and Metoprolol to help my heart recover and regain as much of it's normal size as possible. I may be on them forever - TBD. With regurg, the LV size is a big factor they watch I believe.
Tony
Tony, your LV continued to shrink after 1 year post surgery? If so, by how much?
 

T in YVR

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Feb 22, 2013
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North Vancouver, BC, Canada
MethodAir - yeah, a bit strange that it came down, but there may be an explanation - and it has been an extremely slow process. Also, echoes are not very exact so there may be some variance from tech to tech. However, I was told that after about 12-18 mo the LV size will probably be as low as it goes. I upped my metoprolol ever so slightly about 18 mo. post op from about 12.5 mg 2x per day (25mg total) to about 36-37 mg daily. Basically 3/4 of a tablet instead of 1/2 tab 2x daily. I'm not sure if that did it or not but that's the only change, other than less exercise lately (so maybe not working my heart quite as hard lately?). I upped the dose because my LV had gone up 1 mm on a test (had also been exercising quit e a bit leading up to it). I was originally at 65mm pre surgery, 66 mm 2 weeks post op, and then slowly trended down. For a few echos I was 59mm, then I hit 58, and then 57mm. My cardiologist orders me echos every 6 mo. so I have been monitoring it closely. So, not an exact science but I'm 9mm down from my high measurement.
Tony
 

W. Carter

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Aug 10, 2015
Messages
142
Location
Dallas, Texas
The problems most people have is CHF, fatigue, fluid retention, hard time climbing stairs, and hard time sleeping due to gasping for air. When it gets to this point it's time to replace the valve.
 

MethodAir

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Apr 27, 2015
Messages
204
Location
Canada
My aortic valve was destroyed during an angiogram/heart cath after being admitted into a Western Canadian hospital for monitoring and tests, four days before surgery. I went into end stage CHF immediately.

So I truly got to feel the weight of this condition as the cardiologist on staff decided to ignore the rapidly escalating HF symptoms in the days leading up to surgery (I basically had no aortic valve).

Regarding the symptoms...it feels really, really uncomfortable. I had severe aortic regurgitation going into hospital but was largely asymptomatic (due to a partially torn aortic leaflet). But after the botched heart cath, there was extreme shortness of breath, a feeling of filling up with fluid, cardiac cachexia, and the most desperate feeling of death looming.

It advances very fast...I went into open heart surgery in total organ failure.
 

MethodAir

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Apr 27, 2015
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Canada
T in YVR;n865433 said:
MethodAir - yeah, a bit strange that it came down, but there may be an explanation - and it has been an extremely slow process. Also, echoes are not very exact so there may be some variance from tech to tech. However, I was told that after about 12-18 mo the LV size will probably be as low as it goes. I upped my metoprolol ever so slightly about 18 mo. post op from about 12.5 mg 2x per day (25mg total) to about 36-37 mg daily. Basically 3/4 of a tablet instead of 1/2 tab 2x daily. I'm not sure if that did it or not but that's the only change, other than less exercise lately (so maybe not working my heart quite as hard lately?). I upped the dose because my LV had gone up 1 mm on a test (had also been exercising quit e a bit leading up to it). I was originally at 65mm pre surgery, 66 mm 2 weeks post op, and then slowly trended down. For a few echos I was 59mm, then I hit 58, and then 57mm. My cardiologist orders me echos every 6 mo. so I have been monitoring it closely. So, not an exact science but I'm 9mm down from my high measurement.
Tony
Great to hear. Yea, keeping the training volume and heart rate down until the LV finishes reverse remodeling is a good idea.
 
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