New to the forum - activity/symptoms questions

[ski girl]

Jordan-

I've had BAV since I was born, and was unable to run because of it. I was still really active (I'm a competitive paddler) and caused a LOT of worry for several cardiologists who couldn't understand how I was able to do what I could do. Around April of last year (when I was 39) I started to feel that I was having a harder time keeping up with my training group and in July I saw my cardio who was getting very insistent that NOW WAS THE TIME. So I went back over my GPS data and proved to myself that I was indeed slowing down.

My cardiologist just about hugged me when I finally said I was ready for the surgery as he had been worried about me keeling over for a while! So you may find that you don't have to convince a cardiolgist that it's time, just explaining how you're slowing down will be enough evidence for them. For some people, 'slowing down' equates to not being able to make it to the mailbox, for people like us, it's dropping from 6:00/km to 6:30/km pace.

Most cardiologists won't have experience with athletes, because most athletes have no need for cardiologists . . . but they DO understand that symptoms are different from person to person.

Good luck from down under!!

 

[bdryer]

Hey Ottawa girl

Always great to hear what you have to express! Your post was an interesting read.

I must say that I was not symptomatic, ( like ski girl those of us who are high end jocks, know our limits and know their is no benefit in exceeding the red line. Hence we are not symptomatic).

Testing is only as good as the technician running the exam. The lady who supervised my stress test took me beyond my red line. I recall being on the tread mill and observing my vitals had changed from green to red. I also observed my heart rate at plus170 BBM. At 55 years, this is outside my upper limit. She kept saying 30 sec more repedativly until 15 min was hit. I was one hurting guy at the end of the test. I believe the tech should have terminated the test when my max HR for my given age was hit. The cardiologist said I did good. Great I did good but post test, my heart hurt when I pushed it. 3 mths post surgery and no pain.

Your post shows validity in the stress test for those who are not symptomatic from AS. I can see the benefit if the tech terminates the test when max HR for you age is targeted. Unfortunately, the tech took me over the edge on my stress test.

 

[Lynlw]

Thanks to everyone who has shared their story. As I'm sure you all know, the more I hear from people that have had the surgery, the more comforted I am that I need it soon.

So, my cardio said today that he concurred with the cardio who did my TEE: that I would need the surgery in about 6 months. He almost made it sound like 6 months was his maximum suggestion. I do have some dilation of the left ventricle, as well as the wall is thickening. Even though I don't have physical symptoms that I can describe, I do have symptoms in the structure of my heart.

I'm scheduled to do a treadmill exercise test next week and I think those results will kind of solidify my cardio's recommendation for surgery.

Jordon, It's great to try and learn as much about YOUR heart and ask questions, but try to remember members here are willing to offer information and share their experiences, but hardly anyone here is a doctor and what their experience are, might not be yours depending on the conditions or severity of them. What have your doctors told you about exercising? Unless they told you to slow down or put you on any other restrictions if you've told them what kind of amounts of activity you are doing, there might not be any reasons to change what you are doing or to slow down etc. ASK your cardiologist specifically about what is safe for you to do or if you have any restrictions.

For example my son has a few problems with his heart,(Aortic and pulmonary as well as structural problems inside his heart that was basically rebuilt and blood rerouted as a toddler), but for the most part there have been very few times he was placed on any restrictions before an intervention.
Except for the post op recovery period, Most times he is allowed or even encouraged to keep up with all his activities, and he even was allowed to finish up a "season" before the interventional caths or surgery. (The staff all were laughing when he was having a cath that they put stents in his pulmonary artery to open it up, and he had his soccer number/shaved colored in his hair from his last game of the season 2 days earlier -that they ok'd waiting until it was over for the intervention was schedualled) and then a few times he wasn't even allowed to take gym class, so not only is everyone different, but depending how their heart is even the same person can have different instructions as far as exercise in the time before surgeries or other interventional procedures.
Since you are having, (or had) your stress test your doctors will know what you can or shouldn't do since they should have gotten great info about what you can tolerate and how your heart handles extra work during it. Be sure to ask any questions you have. There are some really good sites online, the Mayo has a good destription of Aortic regurgitation and this page (hopefully the link works) has some good questions to ask and any info that you should take to help the doctors get a better idea of what is going on
http://www.mayoclinic.com/health/ao...00419/DSECTION=preparing-for-your-appointment

If you don't have copies of all your test results, I would get them, but if your diagnosis is regurgitation and not stenosis, chances are the reason your ventricle is getting dialated, is because since the valve doesn't close tightly, some of blood that went to your Aorta, goes back into the ventricle- so there is more blood in the ventricle than "normal" unlike a stenotic (or narrow) Aortic valve where the left ventricle gets larger over time from having to work harder to push the blood thru the narrow valve opening

 

[sensei Ade]

Hi Jordan and welcome . Roughly this time last year I was told after an echo that my replacement bovine aortic valve had sprung a moderate leak. I just knew that the valve wouldn't last until the end of the year. I carried on doing my sporting activities of karate and the gym but noted a rapid decline in performance. I was doing a brisk 5km on the treadmill at 13kph, but by august could only manage 3.6km at this speed and felt really exhausted. By October I was getting terrible waves of dizziness, palpitations and somehow managed to come to work. I went back for another echo in October of last year. By this time the leak was severe, so I got booked in for surgery in November and had my super dooper bionic On-X valve implanted. So basically the decline is very quick. Once the valve starts to go, it goes! Even in fit and healthy people. Hope this helps

take care

sensei

 

[RunnerAl]

Steve,
Evanston Running Club is my "home away from home" and am I happy to make your acquaintance!
Facts: 66, lifelong runner/athlete, still at 50-55 RHR, "won" my age group in last 2 races (local, NOT CARA!) but now at 9's! We do see the decline - now that I know where the problem is coming from - before the machines do. According to May ECG, I'm "Probably bicuspid w/ sever stenosis and mild AI, normal LV size and function w/ mild LVH, Mild TR w/ moderately elevated PA, compared to 2009 ECG the gradient is increased (.9 cm2, 42mm AV gradient, etc.). Drs strongly suggested I cut back, so I'm not "competing" but just "fun running" at this point. Sched'd for another on Feb (9 mos), but wondering...
1) Why wait? Probability of further heart wall damage vs. ability to recover and continue with running is main concern.
2) Which valve type? Want to outlive the tissue, rather than "get by" with the mechanical, even if it means replacement - wise?
3) Surgeons? My PCP and Cardio are ass'd w/ Evanston/Northwestern here in town, but... ??
Any words of wisdom greatly appreciated!
Thanks,
Al White

 

[epstns]

Al - I've got to run off to rehab right now. Let me get back to you a bit later with some ideas. If you don't hear from me, please PM me to remind me that I promised the info. (The next time I log into the site, this will no longer show as a new post. . . )

 

[ALCapshaw2]

My take on Symptoms is that Symptoms are a sign that DAMAGE is being / has been done to your Heart.

Many athletes report "No Symptoms" before their surgery but realize they really did have symptoms after they get 'fixed'.

Rather that relying on relative terms, you would be wise to get copies of ALL of your Test Reports and look at the Numbers for a better assessment of your condition.

I posted a listing of Categories for Aortic Stenosis based on blood flow velocity, pressure gradient, and effective valve diameter in the Heart Talk forum recently. These parameters are typically measured (or calculated from measurements) during Echo and Catheritazation tests.

'AL Capshaw'

 

[Bean Counter]

Your story sounds similar to mine. Was a competitive Triathlete from 2001 to 2005 (missed a Kona slot by <5 minutes once) and then got burnt out and focused on running only after that. Never had any symptoms and then the doctor heard a murmur during a routine checkup in 2008 (I was 36). He sent me to a cardilogist and he did some tests and told me that I had BAV. He said it wasn't bad, so did not put any restrictions. Fast forward 1 year and an annual echo shows that my aorta had enlarged to the point where he put restrictions on me. I still did not have any symptoms up to this point. His restrictions were no more hard stuff and no runs longer than 10 miles. Within 6 months I started noticing my running pace getting slower and slower I was exhausted all the time. I also started having episodes of PSVT while I ran (as detected by a holter monitor). I would be running with my HR at 135-140, then I would feel a rapid pounding in my chest and my HR would show almost 200. Once that started happening, he said it was time for the surgery.