Just diagnosed with Aortic Stenosis

[Guest]

Hey everybody:

I was found to have aortic stenosis last august in a medical exam after a LBBB showed up on a ekg. The echo showed 1.3cm2. I don't have any symptoms. I run and hike pretty avidly and do time with the weights. This year I had another echo and found it to be 1.0cm2. Still showing no symptoms and keeping my activity level high with no issues. Doc said I might start feeling light headed and just take it easy when that happens. The only symptom I might have and not sure if it is related but I have a ridged fingernail on my right middle finger which popped up in the last year.

I have read the effects of vitamin K2 and vitamin D3 have had good effects. I realize it is not a cure all but If It will help push replacement down the road then it will be of some benefit. I am going to a nutritionist MD to get something formulated and balance other areas of my diet which consist of way too much Chick Fil A and Diet Coke.

I have made the mistake of reading too many medical papers on this and procedures and am now a bit weary and overwhelmed at the thought of living with replacement and whether mechanical or tissue replacement is the way to go. I would like some insight form people that have had this procedure and how life is affected after surgery and any limitations you might have.

Thanks so much

 

[dick0236]

Hi and welcome. Valve replacement is not the end of the world. I had my aortic valve replaced 50+ years ago for stenosis. Only mechanical valves where available back then......and I still have that initial valve. The valve has placed almost no restrictions on me over the years....I've just learned not to run with scissors:coolhank:..........and the use of the anti-coagulant, warfarin, is no big deal. If you are young (<60) and don't like the idea of a redo down the road.....consider mechanical. If you are old (>70)....consider tissue. Between 60 and 70....it depends on your lifestyle.....the more active you are will influence how fast you may wear out a valve.

It is never a mistake to learn as much as you can about this surgery, as you will live with your decision a long time.

 

[pellicle]

Welcome

I agree with dick0236 above. As well as reading here and other sites I will link you to a couple of good posts from my blog related.

http://cjeastwd.blogspot.com/2014/01...r-choices.html

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html


I've had 3 open heart surgeries since I was 10 (and again at 28 & 48). Ive had a (in order) repair, a homograft and now a mechanical.

​​​​​​​Best Wishes

 

[Paleowoman]

Hi - I had aortic stenosis due to having a bicuspid aortic valve. My valve was replaced three years ago with a tissue valve - I was 60 at the time. I chose tissue because I didn't want any ticking noise nor warfarin - I knew that meant I will be having a redo at some point. I just got on the boat a bit early becasue now there is a new tissue valve out called Inspiris Resilia which is meant to last like a mechanical valve but doesn’t need warfarin. Here’s a post about it: http://www.valvereplacement.org/foru...436#post878436

Prior to surgery I didn't have any symptoms at all. I was very fit, walking several miles a day and lifting heavy weights...even the day before surgery. I also took vitamin K2 and vitamin D3, I still do take them. I started taking them several years ago when I read how beneficial they could be on cardiologist Dr William Davis's blog. They're also good for bone health, another reason I take them. I've no idea if they helped 'pushed replacement down the road' but my cardiologist is happy with me taking those supplements. I was even given them when I was in hospital. I also take CoQ10.

 

[Cactus52]

Thanks for the feed back, BTW I am a registered user now.

I will keep posting my progress as it comes in.

 

[Nocturne]

Cactus, can I ask you how old you are, and if you are aware whether or not you have a bicuspid aortic valve?

 

[Fundy]

My experience began with an echo revealing aortic stenosis at just over 1.0cm2 in 2007. Cardiologist mentioned there is no good way to estimate how long it would be before surgery was necessary but 5 years might be a good guess but then again it could just as easily be ten years. The stenosis stayed at that measurement until 2011 when it changed from the 1.0 to 0.7. I remember a member here that went almost a dozen years near 1.0 and then within months of an annual echo with that number developed symptoms fast and a subsequent echo was at 0.7 or less and she had surgery.

The first year after surgery I had some aches and pains as a result, but after that the only impact on life is a daily low dose aspirin, an annual cardiologist visit and an echocardiogram. I went with a tissue so there is always the wondering at cardiologisit visit time about whether the valve is still performing well. Even if I went with a mechanical I'd probable still be a bit anxious about what the echo revealed. Other than that I actually seem to forget I have an artificial valve.

 

[Cactus52]

Cactus, can I ask you how old you are, and if you are aware whether or not you have a bicuspid aortic valve?

Yes, I just turned 50 and was diagnosed on my 49th birthday. Yes I have a bicuspid valve.

 

[pellicle]

Hi

Yes, I just turned 50 and was diagnosed on my 49th birthday. Yes I have a bicuspid valve.

I guess that it's pretty shocking news at first (I have to imagine this as I was in on it before I was really aware of much) , but I can assure you that the choices are all good.

Take your time to take it all in and examine the options carefully. Play each off them through as long term scenarios and run them through over a 15 or 20 year "thought simulation", because it's entirely likely you'll still be living with the choices then. There after no divorces from this one.

Ask every question you feel, and don't be concerned to change camps more than once. Consider only yourself and your family in the outcomes. My two blog posts above are goid good starting points for your thoughts.

Best Wishes

 

[Nocturne]

Yes, I just turned 50 and was diagnosed on my 49th birthday. Yes I have a bicuspid valve.

Oh, you are in good company here, then -- most of the people here got AVS due to having bicuspid valves. I think dick got his from rheumatic fever, which is less common these days and probably carries fewer complications than bicuspid valve. Me, I have two copies of a bad allele that was recently found to rocket Lp(a) into the stratosphere (mine is 13 times normal) and greatly increase one's chances of getting AVS. There are several causes of AVS.

I feel you on reading lots of medical info online and getting freaked out by it. I will share with you the most positive study I have found on long term survival after AVS:

https://www.researchgate.net/public...ectancy_a_Twenty-Year_Relative_Survival_Study

This is also the most RECENT study, published in 2016, and therefore may be more relevant for the present. It is a fairly small study, though.

There is a lot of information there. If you scroll down a bit you will see some data on raw and relative survival rates after AVR grouped according to age. The youngest group is 15-59, but the average age in this group was about 50. You will see that close to 80% of them survived 20 years. Those are less than average odds, but they are not terrible odds either. I look at that data every now and then when I get discouraged. Hope it helps.

 

[Cactus52]

Thank you all for the feedback. I am a bit freaked out a bit still and will take some time to digest. Guess I'll take one day at a time and see how it goes. My biggest fear is actually not being able to continue my running and hiking and other strenuous outdoor activities. I am fighting the ole age clock as best as I can and this is a big dark cloud. Glad to hear so many positive take aways. Funny but my biggest fear isn't dying but being sidelined.

 

[pellicle]

...My biggest fear is actually not being able to continue my running and hiking and other strenuous outdoor activities. ....Funny but my biggest fear isn't dying but being sidelined.

I still do cross country skiing, so you'll probably do no worse than me (after 3 surgeries and currently on a mechanical and warfarin {which I expect to last me with no further surgeries, wish it had been an option when I was 28...})

I don't feel sidelined:
http://www.valvereplacement.org/forums/forum/small-talk/872964-just-sharing-a-bit-of-beauty

also a thread to read
http://www.valvereplacement.org/foru...blood-thinners

 

[Superman]

Thank you all for the feedback. I am a bit freaked out a bit still and will take some time to digest. Guess I'll take one day at a time and see how it goes. My biggest fear is actually not being able to continue my running and hiking and other strenuous outdoor activities. I am fighting the ole age clock as best as I can and this is a big dark cloud. Glad to hear so many positive take aways. Funny but my biggest fear isn't dying but being sidelined.

I received my mechanical valve 27 years ago this November. Had another OHS 8 years ago (3 days from now) to repair an aneurysm. I've been on warfarin for 27 years. In fact, I only lived 17 years without a mechanical valve.

Since my first replacement, I've run a 25k, done a fair amount of mountain biking, spent time the last two years in several national parks in the U.S., including hiking in Yellowstone and Glacier this year. Any sidelining I've experienced has been primarily due to my own slacking on maintaining personal fitness. This has ebbed and flowed over the years with me.

Not saying mechanical is the way to go - just saying it can be lived with just fine.

 

[dick0236]

.......... Funny but my biggest fear isn't dying but being sidelined.

Me too........and "so far, so good"..........it's raining outside, so I can't play golf today. I'll just have to settle for the gym. How you live your life after OHS is, pretty much, up to you.

 

[Nocturne]

Me too........and "so far, so good"..........it's raining outside, so I can't play golf today. I'll just have to settle for the gym. How you live your life after OHS is, pretty much, up to you.

When I am 80, I imagine I will probably feel the same. :^)

 

[mom2angel]

Cactus52,
I am 37 years old. I had my first artificial mitral valve put in at the age of 2 due to bacterial endocarditis. I had it replaced with a larger valve at age 13. I've had this current valve for almost 24 years. Since I was a toddler when I received my first valve and started taking Coumadin daily, I have never known life any other way. The valve has never held me back. I ran track and field in jr high and high school, and played volleyball a few years. I played softball every summer while growing up, and went swimming, jumped on the trampoline, road bikes, etc. My parents kept me away from basketball due to the fear of head injury. However, it is my favorite sport to watch. Other than not playing basketball, I have never had any restrictions.
Two years ago, my husband and I went sky diving for the first time. Maybe not the smartest idea while being on Coumadin, but I've never let it hold me back, and it was a great experience! As some others have said, you choose how to live with the valve. It's really not the end of the world. I know it can be scary to get that diagnosis. I was too young to understand anything about it, so I was able to miss that scare. Try not to worry too much. You'll do great. And, you'll meet some great people and get some great information on here.
Best wishes,
Jill

 

[Cactus52]

Thanks Jill.

Just hoping to get a few more years before I have to have surgery. Looks like there is great technology on the horizon.

 

[knotguilty]

I wish I could say welcome Cactus52. Your story resembles so many here. I was early 50's when I got the news of my stenosis. I too was working out, no symptoms, couldn't hardly believe what I was hearing. Even going into surgery, I felt relatively fine. I was going on the advice of the doctors that said I could be dead in two years if I didn't have it done. The stenosis causes problems with your heart. But all that being said, after surgery, I felt much better than before. I didn't realize that I did have some symptoms that now were all gone. I could actually run and not be strugling for air. It really is a second lease on life. There are no guarantees but as long as you take care of yourself, you can certainly stack the deck in your favor, like exercise and eating right. I had my surgery at 55 and am now 60, with a tissue valve. The doctor just a couple weeks ago refused to have an echo done for the third year in a row because I feel so good, he doesn't see the need. Don't be afraid of the surgery, odds are way in your favor. It is a good time to get yourself educated on what to expect either way and this web site is a really good place for that. I think they lean a little heavier on the mechanical here but whatever you decide will be the right one for you. Any questions, don't hesitate to ask. My tissue valve was the right decision for me, I feel great, no limitations, and I expect my valve to last my lifetime.

 

[pellicle]

Hi

Just hoping to get a few more years before I have to have surgery. Looks like there is great technology on the horizon.

well its like everything else (houses, cars, computers ...) there is always something promising on the horizon (which may or may not pan out anyway). As always the best advice is to get it when you need it. My view is that no matter what its better to get it younger (when recovery is better) than older.

We already have great systems to support all choices and better valves of either flavor. Now looks pretty darn good to me. (curve ball: and what will health care costs / insurance / availability be like in the USA in 10 years?)

 

[epstns]

Hi, Cactus,

Your case sounds a bit like my own. I was diagnosed with moderate to severe aortic stenosis due to a "probable" bicuspid valve, at age 52. I was an avid runner and gym rat, and was is pretty good shape for my age. Initially, my valve area was, IIRC, 1.2 cm2. I had no symptoms, and was given no restrictions. We watched my valve progress for almost 10 years. I asked my cardio if he would tell me when it was getting to be time to replace the valve. He said "No. You will tell me. I literally never have to tell my aortic stenosis patients when to have their valves replaced. They tell me when they think it is time, and they have always been right." What he meant was that the tests and numbers do not tell us when to intervene. Our bodies and our symptoms tell us. When I finally told my cardio it was time for my replacement, I told him "I'm tired of being tired." That was my only symptom - I was getting more tired, more often, and earlier in the day.

I ran/jogged and lifted weights right up to my surgery date. At age 63 I had a tissue valve implanted and, due to a "few" complications, also had a single bypass and a pacemaker implanted. My recovery was the proverbial train wreck, with quite a few complications. I am NOT telling you this to scare you, as my next comments will show.

Once I got past the first couple of months of early recovery, I went back to working 50+ hours a week AND my 5 day/week gym routine. It was slow going at first, but by the end of the year, I was about back to where I started, and shortly thereafter, I was and am doing better than I was before surgery. I am not just weeks shy of my 70th birthday and I still lift weights (light weights, high reps) and go to the gym 5 days a week. I am not as fast as I once was, but I am also not as young as I once was. I think I do more and am in far better shape than the typical 70 year old geezer, and my valve and pacemaker have not held me back. The only things holding me back are my knees - after 30+ years of running, they just won't tolerate any more of it, so I have to use an elliptical machine to minimize the impact, and the fact that my meds keep my max heart rate to about 145 BPM, limiting my training intensity.

So, all the details aside, let me just say that I think my valve replacement has improved my life, not the opposite. After replacement, life is what you make of it. For me, life is good.

Welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. You've come to the right place. Visit often and ask all the questions you want. The folks here are a wealth of firsthand information and are very willing to share./