Just got Diagnosed

[bkdamon]

Hi,

I just got my diagnosis and I have a bicuspid aortic valve and I guess that condition leads to an enlarged heart (currently 6.2 cm and steady )
The cardiologist says I'll need an echo every 6 months and if the heart gets to 7.5 cm we'll have to do a surgery/replacement.

I'm sure every case is different but I was wondering if there was a general time frame for the progression of this condition. A couple years? 10 years? I'm an active cyclist so my heart gets exercised regularly. Would cycling still be possible after a valve replacement?

I appreciate your patience. I'm pretty much in a state of confusion right now and I'm trying to find some solid ground.

Thanks

 

[Ross]

Hello, cycling is still in your future. I'm confused on this heart size thing. Is this actually the size of your Aorta? Best thing to do is get your records and all test results and keep them current. You'd be amazed at what you can find out from those that you aren't told.

As far as how soon, could be years, months, weeks, days, anyones guess. There is just no telling without staying on top of it.

 

[njean]

I think you have a good cardiologist who is being very prudent in wanting you to have an Echo every 6 months & keep on top of things! As Ross said, no one can really give you a time frame so following you closely is the right thing to do! Are you having symptoms & did your cardio put you on any meds? Also what does your dr say about you cycling during this time?

Hang in there......there's lots of us in the waiting room so if you need to talk, we're here!

 

[ARGreenMN]

You've found the right forum! This is a TREMENDOUS place to get a feel for things when you're new to it (that was me just a couple months ago). Ross and others will remember some of my ignorant questions I was born with bicuspid aortic valve and started my annual echos about 5 yrs ago (I'm 49 now and just had my surgery a couple wks ago). My cardiologist would always say - it may be next year, 2 yrs, 5 yrs or 10 yrs - we won't know 'till it's time, and will base it primarily on your symptoms... I've always been pretty active too. The first symptoms that caused me some real concern happened on the basketball court (a couple of scary shortness of breath and chest/back pain episodes, along with light-headedness). I eventually stopped playing a year ago because I was too scared I was gonna croak (and am looking forward like crazy to starting to play again this fall - which everyone says I should be able to do). But then I started noticing over the last year I'd get short of breath just walking up slight hills, or going on long walks. I knew I was out of shape, but c'mon! So, I finally went in for that last echo back in March - knowing full well, it was probably time... And it was - when they got in there, my valve was so calcified, they had to cut it out in pieces. As you'll hear from others - don't wait too long - you can easily do permanent damage if you do. But if you go in early enough, before any permanent damage, you should be fine afterwards (be able to bike again, etc.). PS - as you get closer to surgery, come back and ask all those questions you'll have (how big will my scar be, how long will I be down and out, etc, etc. - this is THE place to get those questions answered too). I just can't say enough about this forum - it's been a true blessing for me!!!

 

[buncle]

Welcome on board.I am not the technical one but, there alot of great , smart,people here that can answer your questions-just ask.

 

[Luckyguy17]

Welcome bkdamon,

You are definately in the right place for information and support to help you with supplementing the information that will become available from cardiologist, surgeons and other professionals, as time moves forward and the need for surgery becomes apparent.

I was also aortic valve bicuspid, til a week ago and am now tricuspid (i think, smile) folowing valve aortic and mitral valve replacement surgery, with prosthetics.

Check the threads on this forum, ask the questions, as you can see the "how soon to" timing one requires a crystal ball that none of us have, including the pros

my 5-15 year prognosis, 4 years ago, turned out to be four years

good luck with the journey

Gil

 

[nngbwh]

Welcome aboard bkdamon.

 

[ALCapshaw2]

Hello, cycling is still in your future. I'm confused on this heart size thing. Is this actually the size of your Aorta? Best thing to do is get your records and all test results and keep them current. You'd be amazed at what you can find out from those that you aren't told.

As far as how soon, could be years, months, weeks, days, anyones guess. There is just no telling without staying on top of it.

I "echo" Ross' comments.

It would be helpful to know which dimension your Cardio is referencing.
In any case, 6.2 cm is a fairly 'large' number for any of the typical heart dimensions.
One of our 'standard recommendations' to 'newcomers' is to get copies of ALL of your Test Results from the testing facility which they are required to provide by the HIPPA Law.

I encourage new BAV patients to read around in the BAV and CTD (Connective Tissue Disorder) Forum to learn about the areas of concern with those conditions.

I would also encourage you to do some 'Surgeon Shopping' for a Surgeon with considerable experience treating BAV patients. It is important that the surgeon be able to recognize and KNOW how to deal with Connective Tissue Disorder(s). This kind of knowledge and associated skills are a 'step above' the comfort level of most Bypass and occassional Valve Job Surgeons. Such surgeons are most often found at Major Heart Hospitals such as Duke in NC or Emory University in Atlanta or PeachTree CardioThoracic in Atlanta. You may want to ask your Cardiologist for the name(s) of such surgeon(s) that he knows. You Do Not Want to be selecting a Surgeon from a Gurney in an ER somewhere!

'AL C'

 

[Maryka]

In 1990 I learned I had an (ascending) aortic aneurysm and was (incorrectly) diagnosed as having Marfan Syndrome. In 2002, a a "yearly checkup" at Stanford, I learned what I really had was a bicuspid aortic valve with an aneurysm. In 2008 the aortic valve was so bad that I could not walk without stopping to catch my breath. (The aneurysm seemed to have "sabilized" due to my taking beta blockers.) In December of 2008 I had AVR with a dacron tube "fixing" my aneurysm. So, for me, I was in the waiting room for about 18 years.

 

[Mentu]

BKD, few of us have had as much experience with all this as Ross. He is giving you some of the same advise he gave us which may be a little unsatisfying but better hear the truth than a fiction. When you have a copy of your echo-cardiogram report you will have information that you can really compare with the experience of others. We don't know what 6.5 cm means. If the calculated area of your aortic valve opening was 6.5 cm2, your Doctor should be arranging for you to speak with a surgeon so I suspect the measurement refers to something else. One of things people here will encourage you to do is learn more about your condition so you can be knowledgeable participant in planning your treatment.

The time thing is a varied as the members of VR. I learned 10 years ago that I had aortic stenosis. I began noticing some minor problems 4 years ago but wrote them off as a need for more exercise. 2 years ago, symptoms began appearing but they were not too intrusive and it was then I started paying attention to the echo-cardiogram. Then last summer in July after a busy trip to China in June, My symptoms started becoming worse every week. A new echo-cardiogram indicated a lot of change had taken place within the previous 6 months so my Cardio arranged a heart cath because he questioned the accuracy of the echo. The heart cath three weeks later verified the echo-cardiogram results so 2 weeks later I met my surgeon and a month after than had the AVR.

It is possible your valve will not be a serious problem for several years but you are fortunate in being diagnosed now so you can be following the tests that your Cardio will run periodically. As well, you can also follow the development of symptoms which you need to report. As you will read here, no one can predict whether you will develop symptoms slowly, rapidly or not at all. It is a very individual thing. The more you know about what is happening, however, the better off you are. Finally, you have found a great community here in VR.ORG. I certainly have found it an invaluable resource for information and it was wonderful to find a whole community of people who truly understand the emotional roller coaster that begins at diagnosis. The best news of all that we have to share is that there is an excellent probability that, should you need surgery, the outcome is likely to be excellent.

Let us know what is happening as you learn more.

Larry

 

[tprice54]

Welcome...yes, cycling is more than possible, you may be surprised how much your valve affected your training.

 

[Superbob]

Welcome, neighbor! I, too, am wondering about what dimension the doc was referencing. I had a 5.5 cm aneurysm of the ascending aorta on the day on my surgery and that was considered a dangerous level to have reached. Perhaps the 6.2 you mentioned is in a different context?

Anyway it is great that you are being closely monitored, and yes most folks can carry on very active lives after this surgery. Good to have you with us. Keep us updated.

 

[karen14]

Welcome to the forum bkdamon!
I was diagnosed around age 27 and didn't need my replacement until age 45. I went for echo's annually that whole time. It does vary from each individual as stated here already, as to when you'll need surgery. But it's most likely that you have time yet. And I stayed very active up until only a couple of years prior to needing surgery. As far as cycling afterward, I've heard many on this forum even running marathons after their surgeries! Amazing! So take a deep breathe, know you're not alone in this, and live your life!

 

[bkdamon]

Thanks to everyone for your support and understanding! Mentu: Your comment on the emotional rollercoaster hit the nail on the head! I never thought it would be this difficult to come to grips with something like this but it really is different when it gets this personal.

Looks like I have some homework to do and getting copies of my records sounds like good advice. I don't know what the Doc was referring to when he gave me those measurements but I'll find out and post it once I do. I remember he did say that I currently have mild to moderate regurgitation and he didn't mention anything about stenosis. I also get PVC's or PAC's which is what this whole mess started out with.

Yay! for cycling before and after this surgery happens. It's my focus that keeps me halfway sane and I'm glad to hear that I should be able to keep it in my life!

Thanks again to all of you! I'm so relieved to have found people that understand!

 

[MarkU]

I was first diagnosed at age 5. I had regular annual checkups, but didn't develop any symptoms until I was 47, about six months before I had my surgery.

My surgery went well. With my doctor's encouragement, I started doing a lot of aerobic exercise after my surgery. That eventually led to me doing my first triathlon three years post-op at age 50. (Which obviously included a lot of cycling)

I had developed some enlargment of my left ventricle prior to my surgery, but fortunately it reversed itself within about 18 months.

I would expect you'll be back on your bike soon.


Good luck,
Mark

 

[Marguerite53]

Welcome to this wonderful community! Please don't be shy. We're here 24/7 most days and the breadth of personal experiences is dizzying and we're all happy to share and support.

Please remember that we are not doctors, just people who have an experience to share. Every suggestion needs to be run past your own doctors since they know your particular medical history (and we are all so very different).

We have all been on this emotional roller-coaster! There is a lot of information to get your arms around. As your work to put the pieces together you will find that you may either feel much better about things, or much more terrified!! Either way you can see from this forum that there are a whole lot of people who have come through this kind of surgery just fine! So try to take an investigative approach for awhile -- read, ask questions, gather, re-read..... don't personalize it so much. This whole thing is really quite manageable. But as with anything that needs to be managed, you need to understand what you are managing. One of the things we are best at here is helping you formulate questions. So please.... ask away! No question is too silly or strange. This is big stuff we're talking about. Your heart. We get it! We really do.

If you start new threads with each new type of question more people will likely see it and work to help you.

Thanks for joining us. Best wishes.

Marguerite

 

[Bean Counter]

Welcome! I was an avid marathon runner and was diagnosed with Bicuspid Aortic Valve in October 2008. It shocked me as I felt great and could not imagine antyhing was wrong. He gave me the go ahead to keep training and they would monitor it every 6 months. Last year I went in for my check up 2 weeks before the Chicago marathon and he pulled the plug on it as my leak (and size of my aorta) were too much. As other said, there was no timeline. The cardilogist said it could be 6 months or it could never get worse. He told me that I could keep running, but no more than 10 miles a day and no more racing. He also said it was too early for surgery. Well, over the past 6 months my leak has gotten worse and so have my symptoms. I noticed the worsening of the symptoms was not linear, it just kind of jumped up. The biggest symptom is fatigue. Historically an 8 mile run at and easy pace would be a cake walk, but these days it takes a lot out of me. By 8:30 I am falling asleep on the couch and now that the weather is warming up, I notice my body does not handle the heat well. I am also running much slower these days. The good news is that I am getting this all fixed on June 21st and I plan on running right up to the surgery.

Like your passion for cycling, I have the same passion for running. I spoke with several surgeons and they all feel confident that I will be able to resume a normal running lifestyle post surgery. Like others have said, I am looking foward to running will a fully functioning heart. Head over to cardiacathletes dot org. There are pleny of athletes over there that had heart issues and returned to running/ triathlons and had their best days post surgery. I spoke to a college kid that had this done and he said he is swimming better than ever.

 

[bkdamon]

Thanks for the encouragement! I'm slowly getting up to speed and feeling a little better as I educate myself. No sense trying to ignore the inevitable! I appreciate the advice of those who go before me as I stand on the shoulders of giants, I believe is the quote that fits here!