“Can Aortic Stenosis Progress From Moderate To Severe In Just Two Years?” Asks Peter

By Adam Pick on June 8, 2011

I just received an interesting question from Peter about the progression of aortic stenosis. Peter writes, “Adam, I was diagnosed with moderate aortic stenosis two years ago. Unfortunately, I lost my job and have not had an echo in several years. I’m experiencing shortness of breath. Is it possible that the severity of stenosis has progressed that quickly?”

While at the recent American Association for Thoracic Surgeons meeting in Philadelphia, I was fortunate to ask Dr. Junaid Khan, MD, from Alta Bates Summit Medical Center, this exact question. During our discussion, Dr. Khan provided some chilling data about aortic stenosis, its progression, its symptoms and mortality associated with this disease.

 

 

Thanks to Peter for his question about the progression of aortic stenosis. And, a special thanks to Dr. Junaid Khan for his educational work and clinical success with our community.

For those members of our community who are hearing impaired, a written transcript of this interview with Dr. Khan is provided below.

Adam: Hi, everybody. It’s Adam and we are coming to you from the AATS. We’re very happy to be with Dr. Junaid Khan who many of you probably recognize. He’s held a wonderful patient education seminar in Oakland, California. We’ve got a great question for you, Dr. Khan. It comes in from Peter and Peter writes, “Adam, I was diagnosed with moderate aortic stenosis two years ago. Unfortunately, I lost my job and have not had an echo in several years. I’m experiencing shortness of breath. Is it possible that the severity of stenosis has progressed that quickly?”

 

Severe Aortic Valve Disease (Stenosis)
Aortic Stenosis – Narrow Heart Valve

 

Dr. Junaid Khan: Well, you know, that, Peter, that’s a great question and I think you have every right to be concerned. Aortic stenosis in patients can be very serious and I think of it like falling off of a cliff and one of the things that you can get worried about when you’re falling off a cliff is when you have symptoms. Shortness of breath is definitely a symptom of aortic stenosis. A classic study in aortic stenosis in medical history, when people start to have symptoms and shortness of breath one of them, half of them die in two years. I would strongly encourage you to get a follow-up echo. If you don’t have insurance, there are places that actually will do the echo. You know, county hospitals, things like that. I think the sooner you figure out what’s going on, the better you can deal with this problem.

 

Mortality Rate Associated With Onset Of Aortic Stenosis Symptoms

 

Adam: So I hoped that helped Peter. Doctor Kahn, as always, thanks for stopping by. Thanks for all the patient education that you’re doing up in Oakland, California. We really appreciate it and I know a lot of patients went to the event and hopefully you’ll be having some more in the future helping continue educating patients along the way.

Dr. Kahn: And, you know, Adam, thank you for your heart valve surgery book. I mean I think a lot of my patients have thanked me for providing them the resource of that book because they’ve learned so much about how to deal with heart surgery, both patients and their families, so thank you.

Keep on tickin!
Adam


Written by Adam Pick
- Patient & Website Founder

Adam Pick, Heart Valve Patient Advocate

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.


helen holmes says on June 9th, 2011 at 4:05 pm

Yes, it can happen very rapidly. I didn’t feel right and my gp sent me to a cardiologist right away – like that day. Tests were done and I was diagnosed but no one knew how long it would take for me to get to the surgical arena. Well try 8 months or so. So the Doctor is right. Get help yesterday and be sure to let them check you out as frequently as they want. And also read up on the symptoms so that when things progress you will know what is happening and already have a surgeon lined up. Aortic stenosis just doesn’t melt away so get prepared now.



Adam Pick says on June 9th, 2011 at 4:20 pm

Helen,

Wow! That was pretty quick!

FYI, my aortic stenosis progressed from moderate to severe in two years. I caught it just as my heart was starting to dilate. Thankfully, my left ventricle has now returned to normal size after my aortic valve replacement surgery.

Keep on tickin!
Adam



Randy Heimerl says on June 10th, 2011 at 8:19 am

I had an echo done about 10 months before my surgery. Ay the time I was diagnosed as moderate to severe. Occasionally I felt a bit light headed, but was still working out daily and doing the things I normally do. I was pretty much asymptomatic. I was told after my echo to come back in a year for another test. Well, ten months later I passed out while riding my bike and was rushed to a hospital. Three days later I had aortic valve replacement surgery. I was told by my surgeon after surgery that the stenosis was very severe. That I was lucky to be alive. You don’t want to take any chances with this. Stenosis can progress quite rapidly in some people.
Randy



Kerrigan says on June 10th, 2011 at 10:35 am

My aortic stenosis went from “not good” to “very VERY bad” in just a little over a year.
The new valve is doing great 2 1/2 years later.



Carol says on June 13th, 2011 at 6:47 pm

My cardiologist had been following my congenital bicuspid aortic valve stenosis for 10 years. I knew it was getting progressively worse not because I had any symptoms, but he kept informing me that “the numbers” & “the pressures” on my echo cardiograms indicated exactly how “tight” the valve had become.
When I was told that a cardiac cath & open heart surgery were in order, you could have knocked me over with a feather! I had gastric bypass surgery previously, had lost nearly 100 lbs & never looked or felt better in my life! I remember him telling me that years ago, patients who presented in the ER with “Sudden Death Syndrome” were found to have undiagnosed bicuspid aortic stenosis on autopsy. That was enough for me! Take care of yourself, whatever it takes.



MARK says on June 13th, 2011 at 11:07 pm

Dear Adam,
I had my Aortic valve replacement at the Philippine Heart Hospital in the Philipines last December 2009 after i bought your book online. I feel better now with a normal life. thanks for your book Adam.



helen holmes says on June 15th, 2011 at 4:14 pm

Adam, Yes I made that swift response because I am so profoundly grateful for the way things played out from my feeling lightheaded while sitting in the shade gardening to the Cleveland Clinic where I received a bovine replacement aortic valve.

I also have Crohn’s disease and about 25 years ago my then wonderful gp said something wise. People with chronic illnesses tend to notice when things – even little things – are out of whack in their bodies. Much more so than healthy folks.

So because over time I have sought out and made it a point to find excellent doctors, I still have my colon and my heart is still pumping. People have to learn not to become hypochondriacs at all but to know enough about medicine to move when something is wrong. In today’s medical environment we really are in charge of our own cases and with that responsibility comes an education a patient must seek out for him or herself. It’s there and worth the effort and also broadens your understand of how our complex bodies function.

Sincerely,

Helen Holmes



Karla Mack says on June 22nd, 2011 at 9:14 am

Adam:
This information in finding a surgeon is awesome! However, I need a listing of pediatric surgeons. My son needs a valve replacement; his aortic valve is enlarged and has stenosis. His sugeon at Tulane, Dr. Robert Ascuitto, was wonderful as was his entire team. Unfortunately, the entire team is no longer at Tulane in New Orleans due to the Hurricane. So you can see why I am skepitcal about enduring another operation with new doctors. Any suggestions on the best hospitals? I heard one in Pennsylvania is by far the most advanced.
Thanks.
Karla



Lynn Walka says on June 25th, 2011 at 9:04 pm

I will be celebrating a year soon from my surgery of a new heart valve and a week later a pacemaker
and I feel so healthy. But I always felt healthy and full of energy. I am now 59 and have aways exercised. I only was under the care of a cardiologist because I had a few anxiety attacks and he had me visit every 3 mos. for several years. About a year ago he diagnosed moderate aortic stenosis and said in about 10 years I would need a valve. However, within 3 months I went to severe stenosis and had not one symptom except when one listened to my heart and saw the echo. So I tell all to please get an echo. And Peter please let us know how you are doing?



Carol Lang says on June 26th, 2011 at 2:29 pm

Peter,
Lynn’s comments are sort of what I shared on this blog June 13th. I think that regular echo follow ups are an earlier indication of what’s really happening. The “numbers” can certainly change before you have any symptoms. I am now 3 years post op mechanical AVR, measure my INR with a meter at home, & “all is well”.
Best of luck & keep us posted!



Jeani says on June 28th, 2011 at 11:14 pm

Like Lynn Walka said in her account….I, too, had absolutely no symptoms while in moderate/severe aoritic stenosis. When I tipped to severe stenosis, the symptoms were vague and unoticeable to me. It was only my echo that determined that I required surgery and I had it within one week of the last echo due to the severity of the stenosis and calcification of the valve. I consider myself extremely lucky that the surgeon could do it that quickly, otherwise the outcome would have been much different. Just a note: the valve fell apart in the surgeon’s hand after removing it. How lucky am I!!!!



Cindy says on September 8th, 2011 at 12:05 pm

I have always known that I had a bicuspid aortic valve and it was not until this past November that my doc said I had moderate stenosis, this after i mentioned doing a marathon. I have an appointment on Monday, had another echo about a week ago. What should I be asking him, history on me I had a coartation of my aorta when I was around 7. I honestly have not paid any attention to my heart issues until he mentioned stenosis.



Mark Andrada says on September 9th, 2011 at 7:34 am

Dear Adam,
I appreciate very much the book i purchase from you online which really helps me a lot on my condition after I had my AORTA VALVE replacement last 2009 her in the Philippines at the PHILIPPINES HEART CENTER.I sill keep on reading your book every now and then which gave me inspiration simce my surgery and i always recommend this book to everyone here in the Philippines which could give inspiration who should have the same heart problem like me. Thank you.
Mark



Mark Andrada says on September 9th, 2011 at 7:38 am

Thanks Adam for the book i purchase from you online last 2009 after Mi AORTA VALVE replacement here in the Philippines at PHILIPPINE HEART CENTER. tHANK YOU AND gOD bLESS’
mARK



Tammy says on September 18th, 2012 at 3:01 pm

This is very interesting to me and wonder if there are definite differences in valve stenosis from aortic to mitral. I have mitral valve stenosis have a valvuplasty in 2006 and my stenosis has been unchanged since then – in fact I’ve gone from 6 months echos to yearly echos as of last year. My question is why would stenosis be so aggressive in aortic and not as agressive in mitral? I’m not complaining just wondering why that would be so? Anyone have any thougths – I certainly hope to hang in there with no change for several more years…. I am blessed to have a job and insurance and I sure hope that Peter is able to get his echo done.



Vasilis says on September 18th, 2012 at 4:03 pm

I was diagnosed with moderate aortic stenosi beggining September 20012
I am in good shape but I will like to ask you if it is better to have a Kathet.or sergury when I start having symptoms ?
My doctor said we will have another echo in 6 months.



Lynne says on September 20th, 2012 at 5:41 am

I have a biscuspid aortic valve that wasn’t discovered until I was 39 and was monitored yearly thereafter. The first time that the word “stenosis” was mentioned was only two years ago. Since I was asymptomatic, my doctors continued monitoring it until this July, when I started getting symptoms – pain in my left arm, tight chest, shortness of breath. Fatigue increased, but I credited my high stress job for that. I didn’t even realize I was getting dizzy until my husband pointed it out that I was sitting down again after getting up quickly; it was just standard operating procedure because I was grew used to it. As someone mentioned in a previous post, the early symptoms were subtle – I’d catch myself rubbing my arm, or stopping at the top of a flight of stairs to catch my breath, but *I* knew, actually felt, that something wasn’t right. After several more tests – TEE, stress test, heart cath – the doctors found that the valve is severely stenotic to the point of almost acting as a blockage. I’m having aortic valve replacement surgery early next week, and I don’t think it’s a day too soon, considering that the symptoms have been making themselves clearer by the day.

My point is – don’t wait. You know, or feel, something is off, and there are ways to afford tests and treatment without insurance. Even with insurance, it’s not inexpensive, but I’d rather have debt that I’ll be able to pay off because I’m alive, than be a death statistic. You know your body and its signs better than anyone else. Get it checked out.


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