Fear, Pro Athletes W/BAV /Exercise, CT Scans, Blood Pressure Meds and Heart Rate

[Jmprosser.lab]

Hello all!!




I come to the community again for some re-assurance as I adjust to new meds and wait on results of a CT scan.




As a reminder:

27 with BAV (Stage 2 Regurgitation, mild to mod)

Aortic Root 3.6 (enlarged not anuyerism)

Slightly high blood pressure

Occasional Sinus Arrhythmias


I apologize if some of these questions are dumb, but I’m just working through psychological barriers!! You all helped me tremendously last time and I hope to repay that kindness by helping ppl with psychological struggles like me in the future.



Silly questions:

1. I just got my CT scan and I know there is some cancer risk associated with the test. Is there anything I should do or a test I should get after? Not sure the level of concern I should have here. This Is my first ct scan in 15 or so years.

1. What sort of things can the CT scan rule out? I know it will give an accurate size reading of my aortic root, but can it also confirm my hearts effectively functioning and rule out high risk of heart failure, heart attack, stroke, etc? Really want to stop worrying about these things and I’ve already had an echo, stress test, ekg, blood test and stress test before the CT. All of which came back good.

1. My resting heart rate can sometimes dip into the 40s. It’s normally 50s and gets up to 60s during the day but recently it just worries me as I take a new blood pressure med that has some lowering effect on my heart rate(beta blocker). Don’t want it to get to low and cause failure. My dr said I just have a very abnormal heartbeat/rate but that it’s nothing she’s worried about. Does this seem logical? It’s been freaking me out and now I check my heart rate wayyyy too much. This med drops my blood pressure to the 120s while the rest only keep me in 130s, so it’s really effective there...but I worry my heart rate is too low.

1. I was filling out a form at my CT scan and I wasn’t sure how to answer the question “ do you have heart disease?” ...is BAV considered heart disease? Should I put yes on such questions? The radiologist said she didn’t think so but I wanted to ask in this forum what you all put and if you classify BAV as “heart disease.

1. I recently read about Stefan Struve a UFC fighter who will continue to fight in the ufc despite his BAV diagnosis. In the article attached he talks about treating his blood pressure helping his BAV not be as bad and push back surgery? Curious about everyone’s thoughts or familiarity with such things

https://www.google.com/amp/s/www.mm...ack-was-pretty-remarkable-just-dont-call-it-a

I also read about Xavier Coleman, a tight end for the New York Jets who got valve replacement surgery as a kid and has went on to now play in the NFL—i bring up Coleman and Struve to ask if I need to have any worry about working out and running and playing pickup basketball. I really like push ups and pull ups and the occasional back yard basketball game, but lately have been to scared to partake. This is silly right? A ufc fighter was cleared pre-surgery and an NFL right end was cleared post-surgery...so someone like me should be ok to partake in the previously named activities? My dr already said yes after my testing but it was only her first year testing me so I wanted more confirmation.

1. I have tachycardia like arrythima episodes sometimes at night lasting anywhere from a couple seconds to a few mins. Heart rate usually gets rapid and I’m the 130 bpm range. Doctor isn’t bothered by them but I still am!! Anyone with experience with these have advice or words of encouragement or info that can help with my anxiety? It’s not afib, my dr says, even though I’ve never had an episode during testing.

Again, I more than appreciate all your words and tips. You helped cure my anxiety and panic attacks better than psychologists!!


Best as always,


Josh Prosser

 

[Agian]

Josh, a lot of the things you're worried about, you shouldn't be.
Aortic Root 3.6 is normal, so is a bp of 120.
I would avoid push ups and situps, because they can spike your bp, otherwise keep fit, it helps.

'Backyard basketball game'!? Jesus, you're living on the edge. LOL
Enjoy your youth.

 

[DJM 18]

I am not so sure, pick up basketball with a bicuspid valve can be detrimental to your career. After all Aaron Boone tried that and then lost his contract with the Yankees because of an injury to his knee ;-)

In any case, you will read here and elsewhere regarding a lot of athletes (many elite) with a bicuspid valve. And there are then many stories of all that people have achieved post surgery. My favorite being a woman who made it to the Summit of Everest with a mechanical valve. But there is also a member of this forum who is a firefighter in Colorado and recently returned to active duty after a repair last summer. The list is very long and the achievements are more than amazing. As they say life goes, and as you will see people here are living to the absolute fullest.

The most important thing is that you are aware of your condition and that you are in the hands of a good team of experienced doctors who you trust fully. There may be a time, if things progress, when they tell you to take it easy but then post surgery you should be better than new.

And one small correction, Xavier Coleman had his valve repaired not replaced.

 

[Paleowoman]

Hi Josh - re your questions about CT scans - I've had three CT angiograms over the past 9 years and 1 CT of my lungs. Every time I have mentioned the risk of radiation but every time been reassured about it. Becasue I am slim they say that they don't have to use so much radiation - so some of the question is how slim or not you are. The other thing is that the machines are better than they used to be. The other thing is whether the risk of doing the scan is worth it. Is BAV 'heart disease' ? I have talked about that with both my cardilogist and rheumatologist becasue one of the medications I'm on would be contraindicated in people with 'heart disease' - the answer is no, BAV is NOT 'heart disease', it is a congenital heart defect, a structural defect, not a 'disease'. Hope this helps.

 

[ForeverThankful]

I don't think you have anything to worry about.

As far as the risk of CT scans, as Anne said, the machines they use are much safer today then they used to be.

As far as your resting heart beat dipping into the 40's, mine also will dip down to into the 40's on occasion, it's usually in the 50's or 60's.

Concerning the tachycardia, it sounds similar to what I have and have had since I was 12. It's a non-ventricular tachycardia, for me it can last from a few minutes to a few hours, and my heart rate will go up to about 220. Cardiologist isn't worry about it. But it is a little freaky!

If I need to answer the question "do you have heart disease?" I put down "no".

Hope this was helpful and try to relax!

 

[pellicle]

Hi

I second everyones views you shouldn't be worried.

I apologize if some of these questions are dumb, but I’m just working through psychological barriers!!

there are really no dumb questions ... just un-asked ones ...

[*]I just got my CT scan and I know there is some cancer risk associated with the test.

about equal to a long haul flight ... do you see anyone worried about that?

People fret radiation when indeed a century ago they used to seek it out ... enemas of radium salts (yes, radioactive) ... it was considered "magic medicin" Hopefully one day we'll end up in the middle of the extreme views ...

Is there anything I should do or a test I should get after? Not sure the level of concern I should have here.

no and nil

[*]What sort of things can the CT scan rule out?

fundamentally its just a more detailed look than an x-ray ... it gives better bases for measurement.

I know it will give an accurate size reading of my aortic root, but can it also confirm my hearts effectively functioning and rule out

not that I know of ... that's what ECG's are for

Really want to stop worrying about these things

Yoga and Meditation?

Go out and walk more in nature its well recognised to be a benefit.

[*]I recently read about Stefan Struve a UFC fighter who will continue to fight in the ufc despite his BAV diagnosis. In the article attached he talks about treating his blood pressure helping his BAV not be as bad and push back surgery? Curious about everyone’s thoughts or familiarity with such things
[/LIST]
https://www.google.com/amp/s/www.mm...ack-was-pretty-remarkable-just-dont-call-it-a

life is for living ... take calculated risks, you don't get second goes. I've posted about the woman who climbed Mt Everest with a mechanical valve (and of course on warfarin)


Enjoy Life ... every minute you don't is a minute of happy you'll never get again

Best Wishes

 

[Jmprosser.lab]

Josh, a lot of the things you're worried about, you shouldn't be.
Aortic Root 3.6 is normal, so is a bp of 120.
I would avoid push ups and situps, because they can spike your bp, otherwise keep fit, it helps.

Hey Agian!!

thanks for your feedback on my posts. I’m actually reaching out cause after my CT scan we found my ascending aorta is sized 3.9 or 4.0. I know you have a similar size/situation so i was just wondering if you had any insight to share on testing, excercise, etc going forward.

My cardio said 4.0 is not alarming at all and borderline normal. She said there’s a good chance it never grows enough to need intervention. Do those things sound true, given your experience?

Do you have BAV as well? If either my ascending aorta or root grew to the point of intervention but my BAV didn’t need repaired yet, they can do a minimally invasive surgery to repair just the aorta right? Just wanna limit the amount of times I need OHS. Would getting anuerisms fixed increase the risk of BAV repair surgery significantly?

sorry for the rambling questions, trying to beat the psychological part of this crap.

best,
Josh

 

[Agian]

Josh, I should really change my signature. I'm post op, so they removed my male genitalia, and now I'm all woman.

No seriously, I had my valve replaced July 2016. I simply avoided heavy lifting and tried to keep my blood pressure low. I have a gym set at home, and I'm not embarrassed to say I lift light.

I thought I had BAV, but when they got in there, they found it was unicuspid; which is like a cross between a unicorn and an ashtray. Was I anxious? You bet.

 

[pellicle]

Josh, I should really change my signature. I'm post op, so they removed my male genitalia, and now I'm all woman..

I know that Agian made me promise to not share this, but now that she's out
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"http:\/\/www.abc.net.au\/cm\/rimage\/9504432-16x9-large.jpg"}[/IMG2]

She does a great stage show too ... This is one from his 2019 LA Stage Show

[video=youtube_share;8-ad1ffcMNk]https://youtu.be/8-ad1ffcMNk[/video]

 

[Agian]

I don't do the Miss Hillary crap anymore. I've moved on.

 

[pellicle]

I don't do the Miss Hillary crap anymore. I've moved on.

I understand ... I mean as an artist you need to keep creating, not just be trapped in what was once a big hit. Don McLean had that problem with American Pie ... held him back he reckons

 

[DJM 18]

If either my ascending aorta or root grew to the point of intervention but my BAV didn’t need repaired yet, they can do a minimally invasive surgery to repair just the aorta right? Just wanna limit the amount of times I need OHS. Would getting anuerisms fixed increase the risk of BAV repair surgery significantly?

Cleveland does a minimally invasive procedure to deal with the aorta with a repair of the valve. Other centers feel it is better to do a complete median sternotomy so as to generate better results with the procedure. Keep in mind that despite the name, which can be misleading, "minimally invasive" is still OHS. And so the argument many make is that it is better to have the complete sternotomy so as to insure better long term results. And they argue that the recovery time is not that much longer. There are studies out on this but it really depends on your specifics and your surgeon's preference. But both are procedures that can be done with excellent results in BAV patients; I recently posted Duke's excellent results from their experience of 336 low risk patients with BAV aortopathy.

There are a few studies and there does not seem to be a penalty on the valve repair from dealing with the aneurysm. The good news is that in the last 20 years significant progress has been made and BAV repair is now being done with increasing reliability based on all that they have learned. Long term results are few and far between (especially with the newer more improved techniques) but the mid term results are very good and getting better. Cleveland reported in 2014 91% freedom from re operation at 10 years for BAV repair; which if you think about it represents patients operated prior to 2004. Every year they learn as they gain more experience.

Hopefully it never comes to this as per your cardios' comments but the good news is that TODAY the outcomes are excellent. It is important to note that a repair does probably mean an additional OHS down the road but for a young patient it may also means 15+ or 20+ years (or even more) of living with the native valve.

Stay focused on all the amazing people that live beautiful lives with BAV, both pre surgery and post surgery. After all, it affects 1.5% of the population.

Anxiety is more than normal so work on a coping mechanism that works for you. There have been numerous studies that show that BAV allows for a normal life expectancy, even in cases where surgery is warranted. And a silver lining is that being forced to be so aware of your own mortality forces you to make the most of every moment of every day.

The one important recommendation I would make is that you make sure you have a good health insurance policy that will put you in the hands of an experienced surgeon, just in case.

 

[Agian]

Well put DJM