BAV and Aneurysm--What are your restrictions?

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PJmomrunner

Well-known member
Joined
Apr 10, 2005
Messages
1,726
Location
SW Michigan
I am curious to know what kind of restrictions others with my diagnosis may have been given. Obviously, I'm a runner. I was told by two cardiologists to keep running, then told by my surgeon to stop. I have now seen yet another cardiologist, who says go ahead and run, but not too much. So, I run 4 miles x 3 days per week and ride a bike slowly (while my buddies run) twice a week. I don't lift anything too heavy--no furniture moving, pouring concrete, toilet installation--and I don't do anything that makes me strain. I lift 20 lb. containers of kitty litter, but I wouldn't carry them for more than a few feet--that sort of thing.

I'd like to know what others have been told. Especially other runners.
 
Hi - I am certainly not an expert, but I have an ascending aortic aneurysm and a BAV and I was told to keep my heart rate down. Walking only, no exertion, no lifiting, no aerobics, which for me is not a problem because I get out of breath just climbing a flight of stairs. They are watching my valve which has moderate stenosis right now. I certainly would not run if it caused pain or shortness of breath. Hope this helps. Bighearted
 
PJmomrunner said:
I'd like to know what others have been told. Especially other runners.

Well...this will be absolutely NO HELP at all to you. But at least I am someone you can commiserate with.

I was a runner too. About 70miles per week. In '82 was discovered having AS. In the years since(and obviously since surgery in '94) then I have gotten as many opinions on returning to my desired amount/intensity of running as I have seen docs!

From "stop all competitive running and most recreational sports" to "if your heart hasn't suffered a suddend death episode by now with your level of activity...it isn't going to...keep running."

IT'S FRUSTRATING!! While we want our health...we also want our quality of life....

Like I said, this would be of no help. Just continue to get educated on your condition and try to see a physician who is familiar with the lifestyles of athletes.

Good luck in everything!

Mike
 
Bighearted and Nailnhed (hmmm...I am taking advice from a guy with a nail in his head? :eek: ):

Thanks for your responses. My surgeon also said to keep my heartrate down, but to what rate? I don't know. I do run with a heartrate monitor and I keep my rate below 140. I feel great when I run. One cardiologist said, "you won't feel much like running on a beta blocker." I don't think he gets how little "feeling like it" has to do with it. The two cardiologists who have weighed-in on the issue after the surgeon told me not to run, basically say the surgeon is covering his butt by telling me not to run. The other cardiologist I saw before the surgeon and he said running was not problem, in fact my valve leaks less when my heart rate is up because the load time is decreased. Maybe that's why I feel good when I run???

Anyway, commiseration is very valuable, Nailnhed, especially when it demonstrates I'm not the only one getting mixed messages. :cool:

Thanks again.

P. J.
 
Not sure what a BAV is (someone please educate me) but I did have a brain aneurysm (actually two... one exploded and almost cost me my life and the other was fixed a year later). I too ran and was also told to stop. ACtually, I was told to avoid any stressful activity (yes, no sex either....:( ). I wasn't allowed to lift anything heavier than a gallon of milk. That really bummed me out when my kids wanted to play of have me carry them to bed.
 
BAV=Bicuspid Aortic Valve. BAV's have high association with aneurysms--mostly aortic, but also elsewhere. http://www.bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html http://www.csmc.edu/3893.html#5

Yikes! I hope you weren't "in the waiting room" for too long! A gallon of milk doesn't weigh very much! Cardiologist #3 quipped (in reference to surgeon's restrictions) "did he tell you not to go to the bathroom?" :p Can you run now?

perrybucsdad said:
Not sure what a BAV is (someone please educate me) but I did have a brain aneurysm (actually two... one exploded and almost cost me my life and the other was fixed a year later). I too ran and was also told to stop. ACtually, I was told to avoid any stressful activity (yes, no sex either....:( ). I wasn't allowed to lift anything heavier than a gallon of milk. That really bummed me out when my kids wanted to play of have me carry them to bed.
 
Perry

Perry

Not to hijack PJ'S thread..but 2 brain aneurysm's AFTER your St. Judes's. :eek: Why?.. Please tell me it wasn't anything to do with taking coumadin :eek: :eek: ....Are you still being restricted?.. On the heavy lifting or Sex :D Aneurysm's are very dangerous. I have posted on VR.Com MANY times about my dear late Brother-in-law..who died when his dissected. Had no symptom's....A healthy age 50 year old..(Same age as me at the time) That was 15 years ago.. Ate his dinner, went to bed and thought he was having heartburn. :eek: Left my sister with 2 young boys to raise alone. :eek: Bonnie
 
PJ
I urge you to listen to your surgeon.

I did not have a BAV or a "known" aneurysm. I did have emergency OHS for an acute dissection of the ascending aorta. The cardiologist on call that night told the ER staff and my husband that I was not going to make it. I am very lucky to be alive!

I had a very physical/active lifestyle before my "event". I was seated in a chair when the dissection occured!

Maybe the surgeon is covering his butt...maybe he's looking out for yours!

Good luck-stay healthy
 
Sophie

Sophie

Welcome to our site. :) I believe you are the 4th member that has survived a dissection... of all our members on VR.Com... :) :) ..How are you doing?When did you have your VR surgery? 15 years ago, when my B/I/l had his to dissect. I just don't think...his ER team in a small hospital had any idea what was going on with him...They thought he was having a bad case of heartburn :eek: My sister even went home to get him some PJ's..thinking he would just stay overnight. :eek: By the time..he was not getting any better. sent him to a larger hospital. Died the next day. :eek: The larger hospital did operate during the night..and left my sister with a HUGE Hospital bill. :eek: It took her several years to get everyone paid off. (After Insurance).Our family helped her... to make sure her credit stayed good...so she could continue to raise her boys...without a Father : :( :( Bonnie
 
I'm new here, too. As a matter of fact I'm sitting here recovering from an ascending aorta repair performed at Johns Hopkins, March 24. This repair was performed almost 12 years to the day after I had BAV replacement surgey performed. I was fortunate that the St Jude's installed 12 years ago was working fine, so he, Dr. Duke Cameron, spared it.

I am one of the lucky ones whose PCP insisted on monitoring the size of the ascending aorta once information was published that there was a higher correlation between BAV and AAA than was previously realized, at least 12 years ago, or so I was told. That said, when the aorta and root started to dilitate, it did so rather rapidly. Although I was monitoring its size on a regular basis, CT scan showed the ascending aorta to be 6.8 cm at the check up in the beginning of March. Although not chisled in stone, 5.0 to 5.5 cm is considered to be the maximum size at which the aorta should be repaired.

Although it's my understanding that for just BAV replacement there is almost always a somewhat leisurely pace in scheduling the surgery, the same can't be said for aneurysms. As I've learned here, you gotta get over the mountain pretty quickly. In most instances beta blockers and blood pressure lowering medicine is administered. The concern is that elevated blood pressure precipitates dissection. In your post there is no indication of the size. If it's 3.5 cm, which is considered dilitation in an average sized person, there's probably little risk.

I've been reading posts here for several days now, and wish I had found this site sooner. Not only is the site informative, but the empathy shared is just great.

Finally, I've been reluctant to post because I'm still suffering from the pump and the meds, so I know you will forgive me for the typos and incoherent parts of this post.

Thanks,

Thom, because Tom had already been taken,
 
Hi PJ

I was told by my internist to power walk only. He wants me to walk 5 to 10 kms, 6 days a week. Jogging is out of the question, not that I was ever a jogger but I did enjoy cycling. After hiking ten km 2 weekends ago I ended up in the ER with severe chest and neck pain and I still have it. Now I am fearful to walk up any sort of hill. Last year I had no symptoms at all. Infact I paddled over 100 km down a river, camping and hiking along the way. I had a great time and never felt better. I tried cross country skiing this winter and I was so fatigued after 5 km that I never went again. It is amazing how fast your stamina goes once your aortic root and ascending aorta start dilating. I'm not sure if your bicuspid valve is stenotic too....but that may be why I get SOB upon any exertion. Who knows...perhaps you should do what makes you feel good, and if running makes you feel great... keep doing it while you can.

Char
 
Running issues

Running issues

Hi PJ

As a runner on the 'other side of the mountain' (I had a Ross Procedure last year), I also struggled with whether or not to run prior to surgery. I have run for 25 years or more up to 100 miles a week and loved the feeling of being fit and active. As my BAV got more stenotic and regurgative, I became more symptomatic and got puffed more until I struggled even walking up stairs. Up until a few months before that I could still run for an hour. So, for me, my body told me when I needed to ease back. I also had ascending aortic dilation (which was repaired at the time of surgery), and the surgeon said he was glad there wasn't any longer delay before he operated - I had waited for nealry four months as a public patient (i.e. no health insurance).

Nowadays I can run again, albeit at a more gentle pace and with a little more puffing, but I'm slowly improving (for my age!)

Kind regards

Grant
 
PJmomrunner,

I can only respond to part of your issue. I, too, have a "probable" BAV, with moderate to severe aortic stenosis. So far, after a couple of years of monitoring, I don't seem to have any dilation or restrictions of the aorta.

That said, with "only" a stenotic valve to deal with, and being pretty much asymptomatic (yeah, I get tired more than I used to. . . ), my cardio uses the approach of "If it feels good, go ahead and do it." He did restrict my weight training to 40 lbs or less, but no restriction on running/jogging. He said that my body would tell me how to proceed, and it has. Over the past several years I have had to slow my pace to stay in the "feel good" zone. Instead of 7:30 miles, I am now doing a 9:00 pace. I typically jog 4 miles per day, 5 days per week. My heart rate will run up to the low 160's, (resting heart rate in the low 50's) and the cardio isn't worried about it. He said that since I've been running for 25 years and since it feels fine, not to worry about the charts or formulas. When I complained about my slowing pace and mild weight gain (4-5 lbs over 3 years), he told me that I should be satisfied at "our age" (late 50's).

Not sure what other cautions are appropriate due to the dilation/aneurism situations folks have, but with aortic stenosis and BAV, my cardio doesn't seem too worried as long as I stay away from the heavy stuff or sports with high dynamic stress (start/stop, like basketball or football).
 
Well, I'm learning from your replies...

Well, I'm learning from your replies...

I'm not sure I like what I'm learning though! ;)

The running and lifting restrictions are only because of the aneurysm in my case. My valve is only moderately regurgitant, which is not by itself reason to operate. My aneurysm measures 4.5 to 4.8cm--again, not urgent reason to operate.

It does seem that all of you who have or had aneurysms were told not to get your heart rates up. I have been to two cardiologists at the U of Chicago and one local cardiologist, all of whom say it's okay to run. Yet the surgeon says don't. I don't get it. And what's "up" anyway? National Marfan Foundation website says not over 100 if you are on a beta blocker (110 if not). But is that level of restriction required if I'm non-Marfan (the verdict is not yet in, but even if I'm not, Bicuspid Aortic Valve Disease is considered (by NMF) to be related)?

Grant, how dilated was your aorta? Ascending? Root? How much did they replace?

Thom, Did your aorta go from normal to 6.8cm in one year??? :eek: My beta-blocked-blood runs cold reading that!

Oh...I don't know...
 
PJ... thanks for filling me in on BAV... I had that too, hence the aortic valve replacement. Mine was also from the CoArt though.

I had to wait a year. Felt like a BOMB was waiting to go off in my head if I did the wrong thing. :eek: I felt useless for the whole year and felt aweful about having my wife cutting the yard (we have a little over an acre). But, I'm lucky to still be here. I should post my story sometime, it's really interesting.
 
Headed for ascending aortic surgery

Headed for ascending aortic surgery

I just found out Tuesday April 26 that I have an ascending aortic aneurism measuring 6cm. I had a bicuspid aortic valve replaced with a St Jude's valve in October 1997. My cardiologist found the aneurism using s CT scan without contrast. I am to go to a Memorial Medical Center in Savannah June 5 to have a angio CT with a 64 slice scanner to confirm the size. Assuming that the size is confirmed I will meet with the cardiologist again on May 11 and proceed to schedule surgery. I certainly hope your recovery has progressed well since your history seems so much like mine. I am 66 years old. Please let me know if you have any advice.
Thom said:
I'm new here, too. As a matter of fact I'm sitting here recovering from an ascending aorta repair performed at Johns Hopkins, March 24. This repair was performed almost 12 years to the day after I had BAV replacement surgey performed. I was fortunate that the St Jude's installed 12 years ago was working fine, so he, Dr. Duke Cameron, spared it.

I am one of the lucky ones whose PCP insisted on monitoring the size of the ascending aorta once information was published that there was a higher correlation between BAV and AAA than was previously realized, at least 12 years ago, or so I was told. That said, when the aorta and root started to dilitate, it did so rather rapidly. Although I was monitoring its size on a regular basis, CT scan showed the ascending aorta to be 6.8 cm at the check up in the beginning of March. Although not chisled in stone, 5.0 to 5.5 cm is considered to be the maximum size at which the aorta should be repaired.

Although it's my understanding that for just BAV replacement there is almost always a somewhat leisurely pace in scheduling the surgery, the same can't be said for aneurysms. As I've learned here, you gotta get over the mountain pretty quickly. In most instances beta blockers and blood pressure lowering medicine is administered. The concern is that elevated blood pressure precipitates dissection. In your post there is no indication of the size. If it's 3.5 cm, which is considered dilitation in an average sized person, there's probably little risk.

I've been reading posts here for several days now, and wish I had found this site sooner. Not only is the site informative, but the empathy shared is just great.

Finally, I've been reluctant to post because I'm still suffering from the pump and the meds, so I know you will forgive me for the typos and incoherent parts of this post.

Thanks,

Thom, because Tom had already been taken,
 
I just wanted to welcome thom...and rtblount (who lives in our Georgia town that raises the world famous Vidalia Onion, Yummy) and they should be about ready to harvest.. :D ..thom, hope your recovery continues to go well and rtblount..I am your age, too, and live in Northeast Ga...Mountains...I had my surgery at St. Joseph's in Atlanta...but, Savannah is so close to you..You should be in a good place for family to visit..Let us know your surgery date. Bonnie
 
Granbonny said:
Welcome to our site. :) I believe you are the 4th member that has survived a dissection... of all our members on VR.Com... :) :) ..How are you doing? When did you have your VR surgery? 15 years ago, when my B/I/l had his to dissect. I just don't think...his ER team in a small hospital had any idea what was going on with him...They thought he was having a bad case of heartburn :eek: My sister even went home to get him some PJ's..thinking he would just stay overnight. :eek: By the time..he was not getting any better. sent him to a larger hospital. Died the next day. :eek: The larger hospital did operate during the night..and left my sister with a HUGE Hospital bill. :eek: It took her several years to get everyone paid off. (After Insurance).Our family helped her... to make sure her credit stayed good...so she could continue to raise her boys...without a Father : :( :( Bonnie

Thank you for the welcome Bonnie!

My surgery was in April of 2003. I found VR.com in April of 2004 and it has been of great comfort to me for the past year. Finding Ross and Robthatsme here on this site has helped me tremendously. Reading posts from kind and sensitive people like you have helped me on many dark days.

I'm sorry to hear about your brother in law. It is difficult to "catch" even today in "big city" hospitals. I trust your sister and her family are doing well today. Bless all of you who helped her.

I am well. I'm not the same person in many ways, emotionally or physically. I have a St. Jude aortic valve and a dissection (with two flaps) that continues from the Dacron repair down to my belly button. I understand that cardiologists don't like to do surgery until the aneurysm is of a significant size because surgery is inherently dangerous BUT how can they assure anyone that they know what the magic number is. For a year I heard "Oh! Wow! we usually see your kind in the morgue!" We all know about John Ritter, whose family is suing the hospital and recently here in Chicago, Mrs. Weber the mother of the University of Illinois basketball coach, Bruce Weber who died of the same condition.

The ER doctor was telling me there was nothing wrong with my heart and that I was possibly having an anxiety attack when I argued that something was wrong, very wrong and I wacked him HARD on his chest, several times. It got his attention, and everything moved very quickly, a cardiologist was called in, a CT scan, a helicopter ride and surgery! And a MIRACLE!

I admit I'm cautious. I can only say that I would have preferred to have a scheduled surgery with a gifted cardiovascular team!

I love and appreciate VR.com??it?s because of all of you.
 
My 2 Cents

My 2 Cents

Hi.
Due to a bicuspid aortic valve and an aneurism (much like you), I had an aortic root replacement job about 2 weeks ago. I am being told (cross my fingers!!) that following my rehab. I will be able to run and exercise however I choose with the exception of any blood sports. I have a mechanical AV so I'm on Coumadin. I found that just knowing I had a problem and would have to have surgery took away all desire to exercise because I was constantly afraid of something bad happening. I'm not a physician, but I think that whenever simple exercise like running may interfere with something that can be fixed, it's time to fix the problem. I would be tempted to find out 1) how far away you are from having to have the surgery; and 2) if your condition will just degrade over time making the surgery inevitable. If the answers are yes, I'd get it over with ASAP. I'm 32 and with the exception of the surgery and the 6 days afterwards, I'm reallly feeling great and so glad to be on the road to recovery. I had my 2 week check up with the cardiologist today and he said I'm doing great. That being said, I also know that there is a lot of variation here and many other experiences to read. Others may feel differently. As the title says, my 2 cents. No more, no less, right?
 
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