21 year old cyclist with many ???

[Jas0n]

hey guys,

im in an awkward situation. im a 21 year old competative cyclist (former semi pro mountain bike and aspiring road racer) whose life revolves around cycling (although i go to college, i work in a high end shop during summer breaks). i was diagnosed with a bicuspid aortic valve when i was 10, but was told not to worry about until i was much older (60-70). last season, i was "diagnosed" with exercise induced asthma (so my ped. thought). this season, despite alot of work, i never found my form and finally decided to see my cardiologist (i saw him on 5 year intervals at this point). after an echo (which confirmed stenosis and a leaky valve, as well as thickening of my heart muscle tissue) and a stress test (which i finished), i am scheduled for a cardiac mri, after which time i will have to speak a surgeon. if surgery is a prospect in my near future (we know it won't be as defered as was originally expected, but until i speak to the surgeon i will not know. still, i cant help but not let my mind worry about this for the next two weeks), what can i expect as a cyclist? from the research i have done, a mech. valve is out of question given my level of activity; i also mountain bike, rock climbing, snowboard, etc ... what could i expect of the surgery? pain? the procedure? recovery? how invasive is the surgery? is non invasive surgery an option? scars?

i know these are questions that have all been asked and answered (and i have read other posts), but i appreciate anything anyone has to contribute, esp. as it pertains to cycling and my prospects as a comp. cyclist, and everyone elses experiences. many many thanks in advance.

confused, jason

 

[Karlynn]

Welcome Jason. If you weren't shocked and confused, you wouldn't be normal. We have some pretty accomplished athletes in our membership, so I will let them weigh in. I just wanted to make sure you knew that you've been noticed!

You've found a great site for support. We have Been There/Done That.

 

[PapaHappyStar]

Jas0n,

I too understand the confusion and anxiety this diagnosis brings, I had a Ross Procedure done nine months ago for a bicuspid valve ( I was 32 ). This may be a good choice for athletes who want to avoid the mechanical valve and coumadin -- it involves grafting the pulmonary valve in the aortic position and almost native valve hemodynamics on the left side -- the pulmonary valve is typically replaced with a human donor valve ( homograft ). This is a more invasive procedure and should be done by an experienced surgeon at a major heart center with many successful RP's under his belt.

I have recovered well from the surgery and feel an increase in exercise capacity -- I bike recreationally around 20-30 miles 3+ days a week at moderate intensity now.

Ask your surgeon what he recommends and try to get multiple opinions, enlist help here and elsewhere in your search.

The memory of the OHS experience ( and the scar ) fades and you can even take positives from it for your life.

All the best -- keep us posted.

Regards,
Burair

 

[MarkU]

Hi Jason & welcome.

I know you have lots of questions, but it is good that you are doing your research. This site has been a source of information, knowledge, support & inspiration to me over the past four years and I?m sure it will be for you also.

Just to address a few issues you mentioned:

1. I?m a bit confused by your comments about a mechanical valve being out the question due to your level of activity. I really am not aware of any purely performance-related issues between mechanical and tissue valves. I know my mechanical valve doesn?t pose a limit to me as far as actual cardiac function. The only thing that comes to mind would be the size or diameter of the replacement valve, which would obviously have an impact on flow. In most cases surgeons try to install the largest diameter mechanical valve they can. If you?re referring to issues related to mechanical valves and Coumadin/Warfarin therapy, then again that?s really a separate issue to valve performance that?s been discussed at length elsewhere here.
2. Prior to my surgery I had developed significant enlargement of my left ventricle (left ventricular hypertrophy or LVH), which my doctors felt might have done some permanent damage to my heart muscle. Post surgery, my cardiologist asked me to stop heavy weight training (I had been a gym rat, lifting five days a week for years) and instead pursue as much aerobic exercise as I could handle. I have been very fortunate in that the enlargement has reversed itself, even as I have pursued a very strenuous aerobic exercise program training for triathlons over the past 1-1/2 years. In essence, my St. Jude mechanical valve removed the restriction & overloading created by my bicuspid valve and allows it to pump more efficiently. My resting heart rate has decreased significantly while my stroke volume has increased (more blood pumped per stroke).
3. As far as the surgery goes, the conventional through-the-sternum procedure is about as invasive as it comes. It is traumatic to your body and full recovery can take from several months to a year. Figure on being laid up for at least two to four weeks after surgery. In my particular case, I was in relatively good shape prior to my surgery, but it took me nine to twelve months to feel fully recovered to the point I could pursue strenuous exercise again. There is really no ?non-invasive? valve replacement procedure, but ?minimally? invasive procedures, going through the ribs on one side, may be an option. Valve replacement via catherization/stent is being developed but is not yet available. You should discuss it with your surgeon to see if it a minimally invasive procedure might be applicable in your case. Again, in my situation it wasn?t an option due to the extensive calcification of my valve and aortic root.
4. Scars. I have a 7? scar in the center of my chest and two 1? horizontal scars just below from the drain tubes they put in after surgery. Mine are now 4-1/2 years old and not as nearly as noticeable as they once were. My surgeon told me to avoid exposing my main scar to the sun for the first year after surgery (I live in FL with sun pretty intense sunshine).


Have to run now. Again, welcome and good luck.

Mark

 

[Rebecca]

I think it was in 1998 that Arnold Schwarzenegger had a ross procedure done. He had a bicuspid aortic valve. Dr Paul Stelzer at Beth Israel Medical Center in NY has done the most ross procedure. http://www.docnet.org/physicians/phys_bios.asp?phys_id=139 His web page: http://ps4ross.com/index.shtml I know someone who mountain bikes and he is always crashing. My family and I do recreational bicycling and we all have had our crashes. My husband spent three days in the hospital with his crash. You need to get more than one opinion from different surgeons on what surgery will be best for you. You need plan A the one you want and plan B if doctors can not do plan A. After the doctor does all of your tests you may end up in the waiting room.

 

[LLJ]

Hi Jason! The best thing I can tell you is life goes on after surgery. I wish I had known about this website prior to my surgery. These people don't know they eased my mind and gave me courage and inspiration to race again 6 months after my OHS for a bicuspid aortic valve and anneurysm repair. Ask questions to those people who work with hearts every day: cardiac nurses , cardiologists and surgeons and cardiac rehab therapists.
. Take the information and make a decision that fits your lifestyle. Remember for every good thing you hear about one valve/procedure you may hear a bad.
None of us had to give up the sport we loved,but we had to learn patience and good sense ,not to mention putting typical athletic pride in our back pocket.Good news though; it was replaced by the pride of knowing we had over come something most in our sport would never have to.
Also Jason, you're in NYC and around some of the best cardiac surgeons in the world. Most of these hospitals have support and information groups. Use them. NEVER be afraid to ask questions!!!!
Laura

 

[CCRN]

Crap

Crap

Believe it or not, you can hear a lot of crap from people who don't know what they're talking about.......but not here on this site. You get the voice of experience straight from the "horse's" mouth.

Your activity level depends on many things pre and post operative. I wasn't restricted until my peak gradient was 85. The previous years before my peak was in the 50s and I regularly did 20+ mile bike rides as well as running a couple of miles before work during the cold months. I had bicuspid aortic disease as well. My cardiologist sees a lot of serious runners and bikers with mechanical valves. There's one guy hanging around this site that didn't even start running until AFTER his replacement with a mechanical valve and regularly does marathons. I'm having to take it slow right now because I'm on a beta blocker but, with time, I expect to be right back to my regular pre-restricted activity PLUS some.

Thing is, there can be aortic involvement with this little genetic defect and THAT can get you into bigger trouble than the valve. Just ask Ross. Your echo shows your heart is changing and that's something that needs attention. If you haven't seen a surgeon I would highly suggest you go ahead and get a consult. I mean, when you've got something that can only be fixed by a surgeon, you should go ahead and see one, right? Made sense to me anyway. New York was mentioned and if you're in that area there are some great doctors available. I would also suggest finding a surgeon who has a good amount of experience with the Bentall procedure which replaces the ascending aorta along with the valve. Check out the Bicuspid Aortic Foundation. It gives great info for BAV folks. Hope this helps. RBG

 

[Paul]

Hi Jason,

I think we have alot to talk about but I am packing for vacation today. I would like to send you to my initial posting under: Length of recovery time following AVR. I went on and on but it felt good and you will see how much we have in common. I would be happy to discuss my valve selection but I think it is a very personal decission. I lined up a few people, friends of friends, to talk to about their decission process but never did once my wife and I decided on the Bovine Valve. I will say that some of the reasons we chose it have not come to reality, but they still may. For example, one reason was to get the valve and forget about it, and move on. Well that apparently was not realistic; cumadin or otherwise.

I will try to find an internet connection at the beach so I can keep up with the comunity but am not sure if that will be possible.

 

[Andrew_W]

Jason,

Not sure if you're still on the search for info but I thought I would reply as I had very similar concerns to those you're having.

I cycled to a reasonable but far from very good standard (for a benchmark my best 10 mile TT was 23min 5sec) between about 16 - 20 years old and then rowed to again a reasonable standard at University. I had always had a heart mumour which I had checked every 2 years but other than that I had absolutely no symptoms. I had a Ross Procedure when I was 24 to replace a bicuspid aortic valve.

Everyone's experience is different, but the operation for me went extremely well. Obviously, it's uncomfortable for a while, but I was walking after 3 days, back on the bike after 2 weeks and I completed a half marathon (just over 2 hours) after 4 months. Hopefully this doesn't come across as me showing off - I just want to reassure you that you can get back into things very quickly - depending on how everything goes.

I'm now over 3 years post operation and am pretty heavily into triathlons, as I believe quite a few others on this site are. I can honestly say that I do not feel to have been restricted by my heart at all. I am competing on a decent level - I was first out of the swim on a recent large event, and tend to come in the top 20 - 30% overall in my category. My doctors know the level at which I train and compete and have not restricted me.

As I'm not on warfarin, I have only a little knowledge about it, but what I can say is that I am very grateful that I do not need to feel that I am taking excessive risks when I go snowboarding, mountain biking etc.

This is just my experience so please take at face value and consider everyone else's advice into account as well.

Good luck.

Andrew

 

[maryann1941]

Jason.....NYU Medical Center....Dr. Colvin...he's the surgeon to see...Good Luck

 

[BDMc]

Valve Replacement and Exercise

Valve Replacement and Exercise

I am very out of date as far as procedures and valve choices. I can tell you: I was in reasonably good shape when I was diagnosed as having an aortic aneurysm, and needing valve replacement. I had been told the year before I had a murmur to "watch" but was under the impression I might never need to do anything about it. Then I started getting chest pains, mostly when sleeping on my left side. I started working two jobs, stopped going to the gym, and developed what I thought was mono. Went in for a check up with a different doctor, and was told I would need OHS! Told to call a cardiologist right away. I was in such shock I didn't call for over a week. My doctor,( Mitch Estridge, now in Lexigton Kentucky) called me at work and told me to get my ass to the cardiologist. He said I needed OHS within a few weeks or months. I ended up having the surgery about two months later. I have a mechanical valve, and was walking the day after the surgery, jogging within weeks,skiing before I went back to work (3 mos.). I have done some recreational cycling, and had only good results. I can understand concern about warfarin and riding at your level with crashes unavoidable, I had a face plant, and didn't have excessive bleeding even with the warfarin! Be sure to wear your helmet! Road rash will take longer to heal with warfarin, but I'd be inclined to keep riding. I was told "No rock climbing, contact sports, or hang gliding!" I hadn't been climbing for years, didn't play any of those sports anymore, and figured I could give up my dream of hang gliding. For some reason the skiing and cycling were O.K. I sail and kayak when I can, and while most would think these sports wouldn't give you much exercise, I can get my heart rate way up, and am often really beat from all the exertion. Had a couple of much younger guys from some college team out with my fleet in '04. I was heartened to see they were more tired than I was! Keep us posted. All the best, Brian