How long, 5 years, 20years or never.

[Philjud]

So, after winning a bronze medal at World Masters Cycling Champs in 2000, a silver at US Masters Cycling Champs in 2001 and kicking major butt at the start of the 2003 season (I took a rest for 2002) , somebody pulled the plug. I'll cut to the chase, bottom line is a bicuspid aortic vavle with calcification and stenosis. Prognosis is surgery in 5 to 20 years. I can still ride 200 miles a week at a moderate pace (20mph) where the biggest problem is getting my heartrate up. I'm a little more tired than usual but cannot expect any sympathy at this point. My Cardiologist prescribes an echo every year to track progression. The thought of going through a higher than normal deterioration over the next 10 years or so doesn't sound very encouraging. Anyone have any anecdotal examples of earlier surgery. I'm willing to wait for the next echo to see how this is progressing but unless this is zero, I would have thought sooner is much better than later. Thoughts anyone........

Phil

 

[Johnny Stephens]

Hi Phil

The common argument for not operating too early is that you are largely asymptomatic. If you are not experiencing any cardiac damage due to the valve narrowing, many (most?) surgeons would be resistant to exposing you to the risks of surgery (keep in mind, this is major surgery!) when your quality of life is otherwise good. Healthy or not, it's major surgery.

There is also an argument to be made for your point - you're in vigorous health and would likely bounce back quickly. Like you, once I found out I wasn't happy about waiting until I was symptomatic, and I pressed hard for doing it sooner. My cardio had said a year initially, but we did it 4 months after diagnosis, once the surgeon actually checked me out. Turns out I actually was fairly sick already, and just didn't realize it.

If you're uncomfortable with the recommendation, I'd suggest getting a 2nd opinion.

 

[Philjud]

Thanks for the info. Johnny. Largely assymptomatic is the key, being *only* able to do 200 miles a week at 20mph doesn't register on the healthometer as being a problem and certainly doesn't raise the prospect for immediate major surgery with the people I've been dealing with so far (not a complaint). However, the wait for symptoms to develop at a more sedentary pace means I'll either be putting this life style on hold or looking for other things to do. This to me doesn't go down too well especially if I have to have the surgery done anyway. From my limited reading in this forum, I haven't come across any dicussions on the financial considerations for treatment. Insurance companies are in business to make money and there has been more of a push over the last 10 years or so to add more weight to cost benefit analysis when embarking on a course of treatment. I'm 52 years old and the thing that probably comes into play is the fact that if I have this done now I'll probably be looking at a repeat in 20 years whereas if I don't have it done for another 10 years it'll be a one off. This is a legitimate consideration on the part of the insurance companies and medical professionals given the way the economy and business survival works in the US.
Reading through my original post I'm coming off sounding like a type A, single focus (bicycle) kind of guy where the prospect of putting myself under the knife is a secondary consideration. This is not the case. I'm as scared as anyone else by the thought of this surgical procedure but I trying hard not to let this get in the way of doing the smartest thing.

Phil

 

[Ross]

Phil the time line is only a suggested time line. You could go downhill quickly however, until it becomes necessary, they are not going to do the surgery. It is major surgery and the benefits must outweigh the risks before they'll even consider doing it. It isn't something that you can just say, "Hey I have a problem I want taken care of now" It just won't happen.

While I know it sits in your mind churning like a storm, try to live your life and enjoy the things you love. The time will present itself in it's own period.

When it does happen, you'll be out of commission for a while, but should be able to return to your previous lifestyle with minimal restrictions if any.

Just food for thought.

P.S. You may want to PM or Email chillihead, he is into bikes also and this is one of his worries too.

 

[epstns]

Phil - I can definitely sympathize with your predicament. I'm nowhere near as serious an athlete as you, but I'm only a few years older (55) and still run my 20-25 miles a week and work out 5 days/week. I can look back over the past 5 or 10 years and "see" the deterioration in my abilities, but the doc's aren't at all interested in that. As Ross said, they will wait until there is less risk in the surgery than there is without it. In my case, the cardio presently guesses about 5 years.

I'm not looking forward to the last few months of downhill slide, but I've come to the conclusion that it will be when it will be, and until then I'll keep doing as much as I can of the things I enjoy.

We know what's coming, we just don't know when. Come join us in The Waiting Room.

 

[ccrawford]

One nice thing about being an athlete is that you are more aware of the changes in your body's performance and can therefore minimize the risk of waiting too long. Find a good cardio that you trust, learn a lot about your problem and the process by which they remedy it, and your anxieties about the future will be minimized. You couldn't have found a better web site for support during this process. When you do have your surgery, its nice to know that your exercises will lead you to improved performance compared to exercising to slow down the degraded performance. Steve- We better get some cycling magazines for the waiting room.

 

[MarkU]

I had always been told to put off surgery on my bicuspid aortic valve as long as possible, if for no other reason, to let surgical technology to progress as far as possible. I was 47 when I developed symptoms to the point where they were affecting my lifetstyle (shortness of breath, chronic fatigue, problems sleeping, etc.).
My cardiologist's advice was to schedule surgery within six months of developing symptoms in order to prevent damage to the heart muscle. I probably waited a bit too long, spent too much time in the gym, and developed some left ventricular hypertrophy as a result. Fortunately, it appears that I didn't do any irreversible damage, but was lucky.
Now 2-1/2 years after my AVR, I feel better than I have in years. I get to the gym 4-5 times per week, and am contemplating training to do a triathlon next year.

MarkU

 

[Philjud]

Hi Mark, your story sounds encouraging. Please can you tell me more about the specifics of your symptoms. I have fatigue which I put down to being 50+ and have never slept more than 6 hours for years. I've not experienced any shortness of breath but have lost the top end of my cycling performance. More of a muscle weakness than being out of breath. I have some left side hypertrophy but that can be attributed to regular training since high school.
Good luck on your triathlon.

Phil Holman

 

[MarkU]

Hi Phil,
As I mentioned earlier, I had been doing a lot of traveling with my work at the time I first started developing symptoms and at first wrote it off to that (and age). In particular, I was doing a lot travel to Henderson, NV and thought that the heat there might also be a factor.
My first reaction was that I was just getting out of shape due to my schedule and age. I was going to the gym at least four times per week, and could push myself through my workouts, but was totally exhausted afterwards. I just didn't have any energy at all.
I would just lay on the sofa in the evenings, and started to beg off doing a lot of things socially and at my kid's school.
As I got worse, shorts walks especially up inclines, or climbing stairs would leave me absolutely breathless.
Because I had been asymptomatic for so many years, it just took a while for the light to click on that something was wrong with my heart. At no time did I have any chest pains, which I guess threw me off track on realizing what my real problem was.
I finally went to see my cardiologist and after a five minute exam said it was time for the AVR. During my surgery they discovered that my valve was in much worse shape than they thought and my symptoms should have been much worse. The fact that I was in pretty good shape physically evidently covered up some of the symptoms that should have been there.
I couldn't believe how much better I felt after my surgery, even while I was still in the hospital - I had no idea how bad I had really been.
Hope this helps. Keep in touch.

MarkU

 

[David by Philly]

Hi Phil,

My recommendation is to get an echo every 4-6 months rather than once a year. I was fairly asymptomatic, for 30 years after they discovered my murmer at 12. But in the last year, even though I didn't feel it, echos showed slight increase in left ventricle size. (also had a bicuspid AV)

Two things to consider beyond just putting off surgery for later date. 1) Pro - longer you wait on surgery, valve technology improves as well as surgical techniques. 2) Con - as my surgeon said, it's easy to pop in a new valve, but once you get signifcant heart muscle enlargement, you can never fully recover from it.

When you pick a surgeon, just try to make sure he is very experienced in valve surgery. My surgeon probabaly does at least 5 valves a week... his specialty.

Good luck,

 

[DANIEL]

Totally agree

Totally agree

Had my bicuspid aortic valve monitored yearly for 38 years. I bicycled and went to the gym reguarly for the last 20 years. Played various sports. My valve was deteriorating at a faster and faster rate over the last year and only by chance I caught the changes early as my yearly check up was not due. I was asymtomatic until my AVR. If I did not catch the severe valve deterioration, by 6 months, earlier than my scheduled checkup I could experienced permanent heart damage. Agree with David if Docs say 5-20 years and you physicially push yourself, you should think about 6 month
checkups.......remember this is not an exact science......

 

[Ross]

Just to echo what Daniel is saying, I waited almost too long. My LV and heart were stretching the upper limits of normal. By the time I had my surgery, I was in real trouble. Please get those check ups more frequently. It nearly cost me my life.

 

[Philjud]

The information you guys have given me is tremendous. It certainly makes me consider all the variables and stimulates my thinking into asking even more questions and should help me working with my medical providers to come up with the best solution.
I'm off to see a pulmonary specialist on Wednesday because my Cardiologist isn't satisfied that all my symptoms are attributed to my AV condition. Chronotropic incompetence (poor heart rate response) and some right side hypertrophy are things that he thinks require additional investigation.
I've seen lots of numbers about valve areas/restrictions etc since joining this forum but the only number I'm familiar with in my case
is that normal velocity is 1m/s, I'm at 2m/s and the need for surgery is at 4m/s. The engineer in me says that going from a tricupid to a bicuspid would cut the area in half so one would expect the velocity to double to obtain the same flow. Of course this is only considering first order effects and is a gross oversimplification. More to come.

Lastly, how do you get a photo to show up next to your postings?

Phil

 

[Ross]

Lastly, how do you get a photo to show up next to your postings?

First of all you need a picture to be sized at no more then 100 x 100 pixels. You can do that or send it to me and I'll resize it and send it back. Once you have that, you need to go to your User Control Panel above or User cp button, go to edit options, scroll down to the bottom of the page where it says "Change Avatar", click it, on the next page scroll to the buttom and click custom and then upload the picture and then click "Submit Changes".

It sounds a whole lot more complicated then it is. If you have trouble, just give me a PM and I'll help you out.

 

[Jean]

Phil,
One thing I want to add to the already great advice others have sent your way is not to put declining abilities or wind on increasing age...I was diagnosed with my congenital bi-cuspid AV at 36. Was told when I started getting short of breath come back. I had asthma or so I thought, I was always out of breath when I exercised in anyway (I ran back then before a motorcycle accident messed up one knee...bicycle now). Well to make a long story shorter, I kept thinking "age is gaining". Bull. At 56 I went into CHF and my doctor finally sent me to a cardiologist at my demands. The cardio about had a cardiac attack himself at my advanced stage. I am so grateful to report that 3 1/2 years after surgery (homograft) I have no damage to my heart and best of all I feel better than I did in my 40s. I am no biker of your calibre, but I manage to log 30 - 50 miles a week. Not so bent on competition...just keeping the old lady looking decent. I farm - livestock - and keep the place pretty much on my own other than yard work which my husband does. The short of it is, I fee great now. Good luck

 

[joy]

Hi Phil, and Welcome! If you don't mind my asking, where do you go for you cardiology appointments? I have Dr. Doug Stewart at the UW. There's 4-5 of us on the site that had Dr. Edward Verrier perform our surgeries. Until my surgery, I had an echo once every 3 months. Then again, I was pregnant and only had 8-9 months from the time that I found out about myheart disease and my valve replacement. I guess I would feel more comfortable having an echo at least once ever 6 months if I were post op just to be sure. Once again, welcome, you will find so much comfort and knowlege here. Check in often, and keep us updated!

 

[Philjud]

Hi Joy, my cardiologist is Dr William J. MacDonald of the Everett Clinic and thanks for the information of your particular case. It appears that symptoms are not always obvious even with a severely deteriorating valve. This is useful information when considering my proposed yearly echo. I plan to continue to work out 5 days a week to retain what I call a maintenance level of fitness. I will monitor this closely in the future and note any deterioration in power output. I have a fairly sophisticated training bike which records wattage within a 2% accuracy.
I'll do some research on Dr Verrier. Thanks

Phil

 

[Swill]

Aortic Replacement

Aortic Replacement

My major complaint was that I could no longer sing. I used to sing with a group at our local Renaissance Faire, and it got to the point where I couldn't sing in the shower. The weekend before I went in for my angiogram, (which proved I needed surgery, it occurred the following Wenesday) I was winter camping with the Boy Souts up near Lake Tahoe at about 5500 feet. The wierd thing is that I could snowshoe around the 13 acre lake there, but I could not stand up and talk.

i had gone to the Asthma clinic, and was flat out called a liar regarding my complaints, because none of the inhalers affected my lung capacity. All these y

i had been putting this down to getting older (43) and sedentary, wen the real reason was that I was getting sedentary because of the heart.

Don't know what your blood pressure is, but I was told that because mine was so low the damage to my ventricle was not occuring as fast as they predicted.

Ack, I'm rambling. Phil, listen to your body. Anything that might indicate being symptomatic should be discussed with your doctor.
Cheers,

Will

 

[lemdonuts]

Hey Phil cool your sugar jets!!

Hey Phil cool your sugar jets!!

I too had a biscupid arotic valve and just had it replaced this past June 4th -- six weeks ago and I am now swimming -- up to a mile and a half!

I too went bursket when I first heard about it two years ago!! In retrospect I firmly beleive that worry caused me to detoriate faster!!! I was so afraid of droping dead! But as you see I didn't ! I was montiered on a yearly bases and when I was told this past April it was time I was in shock!!! I knew I was going down but didn't realize it was that fast! Up to the very day before surgery I was swimming -- I swam 8 miles a week from the time I found out about in Jan 2001 untill Jube 3rd 2003 the day before the surgery!! The more you excersie the better you will be!!! One thing about swimming as they told me in the ICU was that I was working ALL four limbs which thaen made it easier for me to use my arms after surgery!!

My cardiolist told me the best valve is your own soooooo as long as you can keep yours do -- if you are being montered you won't drop dead beleive me I was afraid of this!!! We are sooooo luckly that we are born in this day and age!!

The other thing that I would suggest is that you start doing sit ups -- you will be happy that you did once you have the surgery!!!

I've now started the dean ornish program which is medication and yoga I wish I had started this two years ago!! I really do my stress and worry caused me to go down hill fast --- I went from a mild moderate in 2001 to a sevee in 2003 and NOT SYMPTOMS except short of breath!!!! No dizzness, no fainting, nor ankles swelling!!! I was in such good physical shape after I was let out of the hospital I started walking 30min/day!!!! Now I am swimming after only 6 weeks and no one cane beleive it soooooo there is hope -- by the way anything less than 1 cm is when they want to replace the valve -- mine was 0.75 cms but my Ejection fraction was 65% and anything under 50% is a problem soooo excersie does help ---WORRY doesn't.

LEM
excuse the spelling -- a speeler I am not!!! Good luck and don't worry I have the patent on that!!!

 

[Nancy]

Just make sure any exercise that is done is done with the knowledge and blessing of your cardiologist. Prior to surgery (and after as well), there are situations in which some exercises would not be wise.

Your cardiologist will have the test results and be able to counsel you.