How bad before the AVR?

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L

liam13

I just finished a moderate 3 mile run, and it's been almost 2 hours and I am still wiped out. The chest aches, the SOB is not so bad, but my wind during the run was weak. How disabled does one have to be before the surgery is done? I'd rather do it now when I have a bit of wind to build on in the recovery period. UGH Liam :mad:
 
liam13 said:
How disabled does one have to be before the surgery is done?
Click to expand...

Very good question. One of the symptoms I was told to watch for was reduced tolerance for physical activity, yet the cardiologist kept telling me it was unrelated to my valve as my endurance went downhill. I finally went to surgery because my aneurysm was growing more then 1mm per month.

I considered a short ride to be 10 miles, by the time I went to surgery I was down to 3 miles and that was a struggle. My HR would stay high sometimes for days after a ride. I was exhausted and needed to take naps after I was done. The good news is it does get better after surgery.
 
How frequently are they checking your valve? I read that once valves begin to wear out, they can reach a point where they rapidly head toward failure. Pre-op, exertion would wipe me out. Sometimes even for the next day.
 
Aortic Stenosis can progress quick rapidly. I went from Moderate Stenosis to Severe Stenosis in 2 months and made it to surgery "Just in Time". The surgeon put me on a 'Baloon assist pump' a few hours after I checked into the hospital.

One of our favorite expressions on VR.com is
"The worse it gets, the faster it gets worse".

You definitely want to get to surgery BEFORE there is Permanent Damage to your heart muscles and walls.
Once you know your aortic valve needs replacing, there is NO benefit to waiting. Waiting only GUARANTEES that your heart will be in worse shape when you do get into surgery and may adversely affect your recovery.

'AL Capshaw'
 
That is a tough question! Probably if you can run 3 miles, it isn't too bad.

Check the AHA/ACC guidelines. Anywhere below 1 cm is where they say you will start having symptoms. Also, is your aorta okay?

My BAV was at 1 cm on a March 15 echo. I emailed the echo to a surgeon at Shands at UF and he immediately called me, suggesting a CT. My ascending aorta was measured on the CT at 5 cm, so we went ahead and scheduled the surgery.

I still don't have any major symptoms that I can notice. They greatly restricted my activity level-can't lift any weights over 40 pounds, no basketball, etc. They are letting me ride my road bike so long as I keep my HR in a very moderate range, and although I have reduced both the distance and intensity, I can still ride 30 miles or more without any problem; my HR averages about 105, but it goes up on bridges or when there is a headwind, so I just slow down when that happens and it goes back down.

It is hard to fact this surgery when you feel good, but it will hopefully make for a better, easier recovery.

Try to get some more info on size of the valve, the aorta, etc.
 
thanks for the replies. My valve is a leaker, not stenotic. My next echo is in about a week. That's been a concern of mine from reading here: that the valve can go downhill quickly once it starts to really go on ya. I suspect I'll make it to the echo in a week, and cut back a little bit on my running. I really hate having my activity so restricted. Liam
 
Hi Liam

If you have your appointment next week, I would ask the cardio who he would recommend for surgery and see what they would say.....can't hurt. Cardio....imho.....wait too long and surgeons would prefer to operate earlier before too much enlargement/damage is done.

Evelyn
 
rckrzy1 said:
If you are still capable of running 3 miles , NOT YET would be my answer.
Click to expand...

I have to disagree with you here. Many studies have shown that very athletic people will be able to go longer with less symptoms. It doesn't mean that they should.

I heard the same thing you just said many times prior to my surgery. My favorite that I heard from my FORMER cardiologist and GP was "How could you possibly be having these issues if you can still mountain bike?". They either ignored the loss in ability or didn't understand. I went from doing at least a 10 mile ride to struggling through a 3 mile ride. When I went to my new cardiologist I found out that I was in Class II CHF, when I went for the surgery I was told the valve was much worse then they thought. The LVH I had prior to surgery is still going strong so I may have waited too long.

I don't know what Liam considers a normal run but based on his original post it sounds a bit too familiar. You need to look at the decrease in exercise tolerance rather then the current level of activity.
 
Getting your valve replaced before you futher damage your heart is key. The question of when is a crap shoot. I noticed shortness of breath on inclines, and when I worked out I could do more in duration but not in exertion. I chose to have the surgery asap. It helped to still be in good shape I was only in the hospital for four days, and no pain meds after five days. I am back to biking about 9 miles a day and feeling great five months post op. Good luck to you!

Ann

BAV - OHS 1-9-07
porcine
 
my experience was similar, i could play tennis for two hours and felt like I was going strong, then one day i played and came home and laid down and just didn't have any energy left, when usually i'd be pumped up. my wife said she'd never seen me like that.

so, even though i was doing Ok, i was actually going downhill. i scheduled the surgery and went through it. and now i'm better with an on-x valve having replaced my stenotic aortic valve.

so...sooner is better, i think. good luck and i'm now sending some excellent vibes to you.:rolleyes:
 
This was a very good question and I really have to agree with mtnbikers comments. My surgery was Oct 5. My last run was Labor Day. Up until then I ran anywhere from 4 to 7 miles 4 or 5 times a week. I knew where I was headed because I just slowed down from my normal pace and often took walking breaks which were not like me.
I guess it comes down to the same thing...we are all different and what happens to each of us has different implications.
 
I was running up to 2 weeks before surgery. Like Kodi, I was getting slower and slower, and finally felt the change. Luckily, I found a cardio (second try) that understood me, and as soon as I told him I felt like crap during a run, he immediately scheduled surgery, no testing. I was shocked (based on some of the disucssions here) that he jumped right at surgery, but his comment was active people like me know when it is time, based on how they perform and feel. Pay attention to your pace, any symtoms, and let your cardio know....
 
liam13 said:
I just finished a moderate 3 mile run, and it's been almost 2 hours and I am still wiped out. The chest aches, the SOB is not so bad, but my wind during the run was weak. How disabled does one have to be before the surgery is done? I'd rather do it now when I have a bit of wind to build on in the recovery period. UGH Liam :mad:
Click to expand...

Liam

Check this out. This is notes that my Cardiologist made about me in 2000, when my leaking Aortic valve was discovered. At the time I think they would gladly of waited longer to operate, but it was stressed the case of my sporting career, intense training schedule, age, stubbornness. As you will know, we in Ireland have a Public Health service, so to get on the Op table so quickly after diagnosis was lucky.

"He originally came under my care in 2000. He had attended for a dental assessment and a murmur was heard. At that stage he felt extremely well but there was evidence of considerable aortic regurgitation with left ventricular enlargement clinically and a blood pressure of 140/65. An echocardiogram showed a bicuspid aortic valve with a severely dilated left ventricular with a diastolic dimension of 76 and systolic dimension of 43 mms. Ventricular function was excellent. There was mild dilatation of the ascending aorta. The ECG showed marked voltages for left ventricular hypertrophy with lateral T wave inversion and flattening of the T waves in lead I.

He was referred to a cardiac surgeon ? at that time, in January 2001, he was starting to complain of some tightness in his chest and he got tired more easily than before. We felt that at the time there was enough evidence to support replacing the aortic valve. Because he wished to continue his sporting activities he did not wish to have a valve that would require anticoagulation and a decision was made that a homograft would be used. The operation went well ? a 26mm diameter homograft was implanted.

He has been completely asymptomatic since surgery."

Maybe you could find out how your measurements compare. I had no symptons, and by chance found out about my leaky BAV.
 
Above all else, it was the slow recovery from a race that tipped the scales for me. I had been getting checkups and ultrasounds for years and when I asked how I would know when it was time, the cardiologist keep saying you'll know when you get there.

The valve leakage was not progressing gradually but in steps. It would go for a few years with no change, then suddenly increase by a few percent. It's been so long now since the AVR (16 years) that I can't recall the numbers, but by the time I needed the surgery, it was significant.

There was one particular 15Km road race I ran every year for 10 or 11 years in a row that I would structure all my training for. I was never a marathoner, so this was my biggie each year. In 1989 at age 41 I was in great shape and was even running personal best times at several distances, including that 15Km. And there was no reason to think 1990 would be any different. I did all the right training and I was ready as ever, so toeing the line that November I had a very precise expectation of pace and finish time.

After the gun went off I went out at my expected pace of about 7 minutes per mile and held it through 5 miles. Mile 6 has a dastardly hill and is always a challenge. It's a struggle in the best of times. But when I got to the next mile marker it had taken me 9 minutes. Mile 7 and 8 where it levels back out again were not much better, I just couldn't get my pace back. I shuffled to the end with a not such a bad time of about 73 minutes but I had been expecting 66 or 67 which was a big dissapointment. Worse yet, I couldn't explain from my training and conditioning or previous racing why I should have crashed and burned then.

I would normally take 1 to 2 weeks to fully recover from a hard 15Km but when I was still wiped out 3 or 4 weeks later it was time to go back to the cardiologist. Yep it's time, he said and of course I knew it then too. The leakage had made another quantum jump and now it was dangerous. So I had to stop running for the year until the surgery could fix it. He did say I could probably wait up to 4 more years if I wanted to take on a more sedentary life style. But screw that, I wanted it fixed so I could get back out there.

I've run that 15Km race another 12 or 13 times since then. Not so fast anymore, but just being there is the important thing.
 
My Cardiologist took the tact that if it was affecting my life, it was time to operate (I was happy with this attitude as I totally agreed). At the time I, like you, was still able to run, but I began having more and more SOB issues. While I was running, I would get moderate chest pain (not enough to make me stop), that typically went away after the first hour. I would also have difficulties taking a deep breath to the point where I would be almost wheezing. Also, not quite enough to make me stop, but enough to know something was wrong. When I explained these symptoms to my Cardiologist, he was quick to suggest that it was probably time for surgery. In his opinion, it was much better to get done with the surgery and back to my active lifestyle than to sit around and deteriorate further. Life is too short and too precious to live with restrictions when there is an option that will make you better.
 
I'm not on the other side yet, so I can't compare pre and post.

But in Mid April, I did a 150 mile bike ride over 2 days, 75 miles per day. We knew the aortic valve was down to 1 cm, but without symptoms, it seemed safe enough.

Then about 3 weeks ago, I consulted with a surgeon who had a CT done. My ascending aorta was 4.3 in Oct, 05, and now it is 5. He recommended surgery, so I looked at the AHA/ACC guidelines and they also recommended surgery. So we scheduled for July 7.

Sometimes I think I have symptoms, but I can't really tell. I've cut back on working out and when I ride the bike, I keep my HR under 120. If I go up a little hill or hit a strong head wind, my HR will go from 110 or so to 125 pretty quickly, and I just back off.

Right now, I just want to get it over with. If your valve is really interferring with what you want to do, it is probably time to find a surgeon and see what he or she says.
 
Damage Control

Damage Control

Damage control seems to be a significant issue which has a bearing on when AVR is recommended. My experience is with a stenotic valve which allowed a significant amount of regurgitation. Left uncorrected, the heart would have permanently enlarged and lost its ability to contract effectively. Congestive heart failure results.

Even at age fifty-one I presented no symptoms associated with aortic stenosis. I suspect I was close to developing symptoms when the docs discovered a significant aortic aneurysm. They replaced the valve and fixed the aneruysm on the same trip.

If you feel that the symptoms you are presenting are having a negative impact on your quality of life, it's probably a good time to have a serious conversation with your cardio doc. It might be better to have the surgery while you're still capable of doing a three mile run rather than waiting until the symptoms get worse.

-Philip
 
Down Time

Down Time

The recovery stuff undoubtedly varies for all of us. Making trips to the bathroom post-op never presented much of a challenge for me. Still, it's important to avoid overdoing and stay within the post-op exercise guidelines your surgeon and cardiologist define for you.

Both my cardiologist and surgeon were very confident that my recovery would be speedy because I was in good shape physically when I had AVR surgery. At the time, I thought both of them were being overly optimistic, but it appears that they were right. Needless to say, both have reminded me that they told me so.

-Philip
 
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