Garth's Journal

Marie Myers  The timing for the surgery will be determined by your cardiologist and surgeon using the echocardiogram results as well as your overt symptoms. I doubt if your recent anemia is being caused by your bicuspid valve, but the doctors will most likely want to investigate the cause of that also. The anemia, depending on how severe it is may be causing some of your symptoms of lessened ability to workout.

Garth Wadleigh  I like your theory Marie, but from what I'm hearing from my cardiologist for the past twenty years, the surgery will take place when I become symptomatic.  As these symptoms slowly creep up and can go unnoticed, I'm confident that it will take a cardiac event (such as a heart attack) before its truly noticable, which is scary beyond beleif.  If I'm having chest pains, difficulty breathing, and pallpitations, it's likely already too late.  Perhaps those of us with BAVD just need to accept our fate as having shortened live.  Better to live a little to the fullest than a lot with fear and restraing.

To quote from a NIH study on the correlation between valve disease and anemia "In conclusion, patients with severe aortic valve stenosis and iron deficiency anemia, hospitalized for heart failure, should be screened..."  Really? You have to get to the point of heart failure first?  What the hells the point of all of this?

Marie Myers  I think it is an older way of thinking  to wait till symptoms appear, but your health system works differently than ours. Keep us posted!

Robert Miller  Long post so I just scanned over it. But I was on an elliptical pretty much every day for 1h. It got harder and then I went skiing with some 20 year olds and struggled. I figured it's just my age. Turns out it was my heart and while not necessarily, it can go downhill quickly. So my only advice is go and see a cardiologist and at least get an echo to assess the situation. 

Garth Wadleigh  Thanks Marie.  I just watched a video on heartvalvesurgery.com that gives evidence that asymptomatic surgery with aortic stenosis is seen to be advancing via echo, or when decreased exersice tolerance serves as a potential early sign.  It's time for me to proactively engage with both my cardiologist and my general practitioner about my concerns.  To be sure, I'd rather avoid valve surgery if at all possible, but if its inevitable with my BAVD diagnosis, I'd rather catch it sooner rather than later.

Marcus Krauss  You do not need to be symptomatic to hit the triggers to have surgery. Your heart can deteriorate past the point where surgery is needed without any outward symptoms, which is why regular monitoring via echocardiogram and CT scan is needed. As an example, I am a healthy 46 year-old former Marine that lifts weights, exercises, and plays sports. I just had a Ross Procedure to replace my bicuspid aortic valve 6 months ago. I had no symptoms and continued all normal physical activity in an undiminished capacity right up to the week before my surgery. I had surgery because my valve regurgitation had progressed to severe 4+ over a few years, which caused my left ventricle to work harder and enlarge to 6.9cm, which is past the threshold of 6.5cm to refer to surgery. My ventricle had increased in size on 3 consecutive ECGs, which is also a trigger to refer to surgery. My aortic root had dilated to 4.6cm, which at my size (6'2, 210lbs) isn't quite yet an aneurysm, but was getting close and not moving in the right direction. Because of all these things, my cardiologist and the surgeon recommended surgery. As my surgeon said "these things that we can measure but that you can't yet feel ARE the first symptoms. By the time you're outwardly displaying symptoms, your heart is beginning to fail, and surgery becomes much more urgent, which then can limit our options for how to proceed, and could also limit the ability of your heart to make a 100% recovery of function." 

Rose Madura  All good advice for you. I thought I was asymptomatic but after I recovered from my surgery, I realized that I actually was symptomatic but attributes it to getting older.  The echo and CT scans do not lie.

Yumiko Ishida  I don’t know if there is a correlation between a valve desease and anemia, but anemia can affect your energy level and heart function. Less iron means less oxygen, so your heart needs to work harder.

Sue Maize  Hi Garth,An annual echocardiogram will indicate the progress of calcification of your valve and once the gradient gets to a certain level (healthy heart is in 0-20 range roughly, AVR pre-op is likely close to or over 100–mine was 92 7 months before my surgery not sure what it was at time of surgery, would have been higher) — your cardiologist will let you know when it’s time by following the gradient progression. Ask them what yours is and what it means for you. 
I also needed to have an iron infusion (through IV) right before my surgery (looked like a bag of puréed liver :). 
My only symptom prior to surgery was feeling tired a lot. 
I’m glad you found this community— the resources and people here have been indispensable to me.  You’re taking some good steps to prepare by exercising and losing weight—the better shape you’re in, the faster and easier you will recover. Best wishes as you navigate this challenging road. ❤️‍🩹🙏🏻

Marie Myers  I will give you the info that I learned. I had a bicuspid AV that I have known since I was in my 20’s. When I became a grownup and got a primary doctor, I visited him yearly. He had me get an echo every 4-5 years. The only symptoms I had were occasional palpitations. Fast forward to 2016, and I got an echocardiogram. Last one was 4 years prior. So, I get a call from my primary saying I had a 4.8 cm ascending aortic aneurysm. Next I needed a thoracic CT scan with contrast, and met my first cardiologist. I did not know that 40 % of Bicuspid aortic valve patients can develop aneurysms. At my first meeting with the cardiologist, I was told surgery was “inevitable” for me. He was right. I had surgery at age 63 (2017 ) to replace my BAV, ascending aortic aneurysm, and aneurysmal aortic root. Everything went well, and I would say more echos are better than less echos early in the game...Wishing you all the best!

Adam Pick  Marie, I'm with you... Fyi, my aortic valve disease progressed from moderate to sever in less than 2 years. I'm a big fan of "Better safe than sorry." Especially, considering the procedure takes less than 30 minutes.

  My valve desease also progressed from moderate to severe in one year and now preparing for replacement surgery next month. Adam, thank you for this site, I am not connected to any other social media and this have been very helpful to me.

Mary Haubrick  I was diagnosed in 2013 with Mild to Moderate Aortic Valve Stenosis. I have a great cardiologist and he recommended yearly ECHO EKG tests, which I have done each year. This year it has suddenly changed from Moderate to Severe...I have no symptoms of this change at all. I will be having Aortic Valve Replacement (TAVR) surgery Sept. 24, 2019. Although I am quite nervous about the upcoming surgery; I am so thankful that my cardiologist ordered the yearly tests. Heart valve disease can change very quickly...keep on top of things by testing yearly. Good luck...

Bradley Dunn  "In theory, as long as I'm symptom free, I should be fine. However, here are my concerns:"

This isn't completely true. You can be doing damage to your heart even though you don't think you have symptoms. Your right ventricle is going to have to pump harder to keep up and to get the blood through that smaller hole. It will do this by getting stronger. At first, this sounds good - a strong heart is a good thing right? Well, the heart will grow as will your right ventricle to keep up with the demand. After a while, the heart wall can thin and lead to heart failure.

Someone correct me if I have stated something factually incorrect. I will leave your other questions to someone else.

I would get a second opinion no matter what. A lot of times you can do this at no cost by having results sent to another facility. This is what I did.

Terrie Syvertsen  Garth,
Just wanted to say that up until I also was at the severe stage, I showed no symptoms. I continued with echocardiograms and followed through with a cardiologist who followed me closely and who I knew was gaging my activities as my heart took on changes that led to my surgery. At the time, I was over 60..biking 5 miles a day, walking, swimming. I believe that although there are some inaccurate echoes, I haven't felt that it isn't 't worth passing up a great tool in identifying heart health. That it is equally important that you have a cardiologist you trust is working with you to determine the stages you are in. It is your cardiologist that you should let know how you feel as I am sure you will feel more reassurance to let you move forward. He/She will also understand and help you with the fear and doubt and let you become better aware of what to watch for. You are not alone in the feelings you are experiencing. It is part of the journey. Answers come as we go.
I wish you well as you continue and look forward to reading about your progress!

Joshua Nowack  Garth - @Bradley is spot on. I really appreciate your note here. I too was thoroughly confused when I was diagnosed. I was running 25 miles per week at diagnosis without much by way of symptoms. I was diagnosed with severe mitral regurgitation on a fluke. My words here should not be a replacement for a qualified specialist here, but...
An echocardiogram is an image of the heart. How the results are interpreted may cause some variability in rating of the stenosis. But you can have asymptomatic severe stenosis. Experiencing symptoms is different than having valve disease. Simply, your cardiac capacity, due to your workouts, is masking the underlying problem. In other words, your exercise routine has your heart working at a higher level than it otherwise would. Symptoms - I'm sure are unique to each individual. But mine started subtly over a period of months where I could no longer red line on my runs without intense cardiac pressure. Cardiac drift occurred quicker. I needed to take breaks for a few minutes in my long runs (from which I quickly recovered). Chest pressure built up especially when I would lay down. So CHF symptoms came on slowly, but noticeably. Remember, CHF is when your body cannot efficiently/effectively supply blood to the body. Heart attack is when your body no longer supplies needed blood to the heart muscle. My coronary arteries are extremely clean, but my valve was totally shot. Not at risk for a heart attack but very much at risk for CHF (congestive heart failure). Fitness tracker diagnostics like VO2 max and heart rate could give some indication on disease progress. VO2 max would reduce. Heart rate relative to your pace will tell you that you have to work harder to maintain pace (your heart rate while working out increases to maintain pace). Resting heart rate would not change. I would doubt your GP would get onboard as they would be out of their pay grade. A GP is not a cardiologist and you might be making a mistake by trusting their opinion. They will be clueless on when surgical intervention is necessary. Change your cardiologist - but a GP would be in danger of medical malpractice if they rendered an opinion of any kind here. Now, you could probably continue for some period of time on your workout regime and kick surgery down the road. But here is a different opinion - get it fixed. Quite a few studies (https://heart.bmj.com/content/104/24/2067) will show that earlier intervention reduces the damage done to your heart by forcing it to work harder to support your exercise routine. Over time, you heart enlarges to support your workout routine. Eventually, your heart just gives out. Why chance it? And once you're done with repair/replacement, your times can improve. You might already be experiencing suboptimal performance on your workouts unknowingly. In other words, you might already be experiencing diminished workout performance but blaming it on something else. Just my $0.02.

Marie Myers  Echocardiogram are an excellent screening tool for many conditions. It is how I was diagnosed first with a bicuspid aortic valve in my 20’s, and then with an operable-sized ascending aortic aneurysm at age 62. The echo probably saved my life. I went on to have the more definitive CT scan with contrast, which made the final decision that I needed surgery . I was playing tennis in the Florida heat, horseback riding, and working at the time. My only symptoms were occasional palpitations.
Wishing you a smooth journey if you need surgery.

Catie B  If your aortic stenosis has tipped into the severe category, I would see a surgeon. Though I am not an athlete, I was walking three brisk miles a day prior to my surgery and had no symptoms. My aneurysm was a consideration in timing; however, during my surgery, it was discovered that my valve -- although known to be at severe stage -- was in worse condition than anticipated. It was definitely time. Aortic stenosis is one of those conditions you don't want to be late in addressing. Best to you!

Barbara Wood  You've gotten great replies here. I had regurgitation rather than stenosis - floppy vs stiff - but my echo showed mild to moderate while my TEE showed severe. Do keep on top of this & best wishes to you.

Garth Wadleigh  Thanks to everyone for your input. I'm still feeling stressed out and surprised that my becoming aware of the diagnosis of severe aortic stenosis came from seeing the echocardiogram results posted to my medical records. I have yet to hear from the cardiologist on this. I called his office today but just get a recording saying "please leave a very brief message and we'll call you back". They called at 4:28 and left a message saying "we're closing now, please call us tomorrow."

If it weren't for all of you, I'd certainly feel that I was walking this alone! Thank you!

Rose Madura  My former cardiologist said to wait until I had symptoms. He retired so my new cardiologist said, no, you need surgery. I didn't like this guy's bedside manner so I got another opinion (from my current cardiologist) who agreed that I needed it and not to wait. Still being in disbelief, I sent my echo to my brother who is a doctor and he sent it to a thoracic surgeon friend of his. They both said, waiting for symptoms is old school thinking. You need surgery now. I agree with Marie, the echo saved my life. Everybody here has given you good advice and I'm impressed with the detail of many of the posts. I've been told that the echo technician can have a lot to do with the diagnosis - either good or bad. A second opinion would probably make you feel better.

Rita Savelis  Not everyone has symptoms. But when they happen you recognize them. If yr echos are showing severe stenosis you should be having them often ( every 3 months). Just because you feel great doesn't mean your heart is, alas. The decision on when to have surgery is a tricky one. I was watched carefully for 5 years pre-symptoms and then waited a year after symptoms with close monitoring. But perhaps in France where I live one is allowed many more echos and doctors visits than in the US.
Take care. And find a doctor you trust.

Garth Wadleigh  FINAL OUTCOME The cardiologist called me directly today and stated that when you look at the numbers on the echocardiogram, my condition had changed very little in the last three years. The words "severe" were an unfortunate choices of wording by the physician who initially interpreted the results before they were sent to my cardiologist.

After looking at my report from 3 years ago, I see that he is right about the numbers. On that report, my aortic valve was listed as having "mild to moderate stenosis". We went back to an even earlier report from 5 years ago that was interpreted by yet another physician and he judged the stenosis to be "moderate to severe" yet the numbers for all three reports are about the same.

Lessons learned:
--Echocardiography is somewhat subjective by it's very nature, but overall is a good monitoring tool.
--When looking at results of echocardiograms, compare the actual numbers from the various years rather than the written comments.
--Get to know your cardiologist and build a trust relationship as early on as possible (the phone call from my new cardiologist today was short, but I think we both found it valuable).
--Don't be afraid to get a second opinion if you feel uncomfortable.

Catie B  That was a heaping helping of opinions there! Glad to hear things are unchanged. I'm sure it's quite a relief.

Willie Radl  Garth, you will find a lot of folks on here that had very few symptoms. I had regurgitation but played hockey,ran, pumped iron my whole life and would have never thought anything was wrong with me without the echo. I was so skeptical I had 3 echos and and MRI and met with 3 Surgeons, plus a handful of cardiologists. All said the same thing...it was time to get it fixed. The basic message was the heart is somewhat forgiving, muscles can stretch some, muscles can thicken a bit, but if you let it go too far the heart may never recover. I'd say trust the experts, as hard as that is to do.