Waiting times....

[Ashley]

Hi Everyone,
I haven't posted on here in a few months, but I have been reading along I have a question about exercise and wait times for surgery. In March of 2005, my cardiologist suggested that I stop playing soccer, running and lifting weights, all things that I really enjoy. I have been walking and doing some yoga - but I am beginning to find it a tad boring. I have another echo at the end of January, and my question is - how long have other people waited for surgery with these kinds of restrictions? Right now my stenotic aortic valve is at about 1cm2 (well, at least I hope it still is, we'll see). If the valve stayed like this for another 5 years, would I continue to wait with these restrictions? I am definitely happy to stay out of the OR for as long as possible, but it means that I can't do the stuff I really like to do. Does anyone else have any experience with this?
Thanks!
Ashley

 

[mbfleth]

Hi Ashley,
Does your Dr. feel like this would be a good time to just have the surgery? Five years as a couch potato sounds like hell. Plus it will make your recovery to a fully active lifestyle take that much longer.
I waited too long, developed clots on the valve and shot a clot into the central retinal artery of my left eye. Not the most fun way to find out that it was time to go. I would hate to think that you may have a unfortunate event while trying to avoid something that needs to be done.
Now, I am running thirty miles a week, weigh less than I did in high school (25yrs ago) and feel great. The surgery was the best thing I ever did.

 

[carista]

Hi Ashley,
I was pretty much in the exact same position as you. In Feb of '05 at the age of 26 I was also told to stop what I really enjoyed - weight lifting. I was told I could still do cardio but had to keep my heart rate lower than I was used to. Not too long after that I had to stop cardio all together because of palpitations. My aortic valve was measured at .08cm at the time and I was willing at first to wait as long as possible before having surgery also. By October I couldn't stand it anymore and was at the point where I wanted the surgery overwith. So for 10 months I also was pretty much a couch potato before I had my surgery, and I'm very happy I had it done sooner rather than later. I really think my quality of life is going to improve greatly once I can get back to my favorite hobby. I'm willing to bet you'll end up having surgery sooner than you think also, just for the fact that I think it progresses faster in younger patients. I also have a feeling you'll be happy when you do too. My cardiologist was guessing 2 years before I'd have to have surgery, and it ended up being 10 months.

Anyway, I know how you feel and here's hoping you can get back into it sooner rather than later!

 

[Paul]

Christa, now i really understand why you are so ready to get back the wt room! You have really be in shut down mode for 9months, not 4 weeks!

I really don't understand the reasons why some are kept waiting? I will follow this thread to see what people say. I had 4 weeks to live with the idea till i had by surgery and rememeber thinking at the time, thank goodness i don't have to go on with my life wondering about my valve and the impending surgery. Way too long to read sites like this

Ashley, I think that significant restrictions on you lifestyle should be cause to have it fixed; but thats just me. Quality of life is the whole point though, really.

OHS is a bid deal, as you know from reading this site, but you should not feel like it's the worst thing in the world. Especially at 25.

 

[geebee]

I think we need to be very vocal about how we FEEL prior to surgery. It is important to remember that tests (even caths) are not 100% conclusive. I went almost 1 year prior to my first sugery in bad shape. I had trouble breathing (had to sleep and sit propped with pillows), could not climb steps, could not even run a vacuum cleaner. My echos always indicated problems but never "severe" enough for surgery. Even the cath I had about a year before surgery showed that surgery could wait for quite awhile.

It was not until I passed out and remained "out" for over an hour, that things suddenly became urgent. Even at that point, the surgeon I saw was convinced (by looking at all my test results) that he could repair my valve. Once he was in, the valve virtually fell apart and had to be replaced. He could not understand how I managed daily routines with the mess he found.

If you are unhappy with the way your life is going, speak up and insist on surgery. "Elective" surgery should mean you have some say in it as well as the doctors. I should have spoke up long before my first surgery and I would have avoided a couple of years of intense deterioration.

Best of luck to you.

 

[LLJ]

This is all a mystery to me! I ran 3 miles the day before my surgery. My last duathlon was 5 months before my surgery and I ran and biked after that. I kept my HR about 70%. I was told to drop the weights to light. I would really ask why. My valve on doppler resembled 1 hand clapping ,so I guess it wasn't great,but I had no symptoms until a few months before. (slower pace,less energy)
Good luck and get informed!
Laura

 

[Jims]

Hi Ashley ,

I am sorry that I am so late in responding to your post, but I thought I should give you my experience anyway.

My valve condition was similar to your's. One year before the surgery I had an Aortic valve area of 0.9 sq cm (80 mm peak gradient). My cardio said that at 0.8 they recommend immediate intervention , meaning surgery. I asked him if I was in serious danger, and he said probably not. BUT, some people with this kind of gradient (back pressure) on the heart, can sometimes experience a fatal type of heart arrythmia.

At 0.9 I had trouble walking up 2 flights of stairs. But, I continued mild exercise until I had surgery. I always use a heart rate monitor and I tried to keep my HR below 120-130. Previously, I could get up into the 190's.

I think that my good physical condition is one of the things that helped me recover from surgery. The better your physical condition going into surgery the more likely that you will recover faster. It is not always true, but the odds favor the fit.

I also had lots of problems with cardio's. When I told one of them that I wanted to mountain bike, he asked why would I even do that at my age. Naturally, that was the last time I saw him. Finally, I found a cardiologist who is also a biker. He had a clear understanding of the kind of exercise that I did and gave good and appropriate advice. Plus he gave me a stress echo nad a cath, so he had clear data on what I could do.

In the end you have to trust your doctor, but if you doubts, get a 2nd opinion. I am 15 months post surgery and I fell great.

Good luck on your decisions.

Jim

 

[Ashley]

thank you

thank you

Thanks so much to everyone for your thoughts and advice, I really appreciate it! I will see my cardio on the 30th, so we'll see where I stand at that point. I really don't want to wait another year or more! Currently I am walking 4 to 5 times a week, keeping my HR around 120. Usually for 45 mins to an hour. I hope that is enough to keep me fit until surgery. I want to be in great shape going in - but that isn't really possible with the limitations.
Again, thanks to everyone who replied I'll let you know what I hear at the end of the month.
Ashley