Introductions, questions, frustrations ....

[Coach Kilby]

Hi,

I'm new to the board and new to OHS, AVR and all the rest of the stuff

I am 50 yrs old. Relatively healthy - ran two marathons and about a dozen half marathons in my 40's.

Last year during a routine physical my doctor asked me "how long have you had the heart murmur?" News to me. He referred me to a cardiologist.

May 2013, I had an MRA and echo. Confirmed that I had a congenital bicuspid valve with severe aortic stenosis. As well, I had ascending thoracic aortic aneurysm of 4.5cm. At that time I was symptom free, but my cardiologist restricted me from exercising. She also told me, that at this time there was no need to worry, this established a baseline and we would repeat the tests again in six months and see if things progressed. She let me know that surgery was in my future, but when, she could not tell.

Thanksgiving 2013 had the tests repeated. No real change in the aortic aneurysm, but the bicuspid valve was tighter. Aortic Valve Area went from 1.3cm[SUP]2[/SUP] (May 2013) to .9cm[SUP]2[/SUP].

I've been referred to a specialist/surgeon at Duke to get their opinion.

Here is my dilemma.

I'm a planner. I need to know where and when things are going to happen. I'm a football coach by profession. If I'm going to get something done this year - now is the time! I can't get anything done June thru November. So is it this year or next year. And I'm not getting any clear answers right now. I guess that is why I'm going to see the specialist.

I welcome and thoughts and opinions

 

[Duffey]

I understand your desire to plan your surgery at the most optimal time for your work schedule. Hopefully the surgeon will give you answers and a timeframe that you can operate with. Best wishes!

 

[FixedAgain]

I think your attitude is great and thats really key. I had two surgeries to repair my MV valve and while things are actually good, if I could do it over again, I would have done some things differently..I am in the camp of sooner is better than later...and it sounds as if you are too.

This easy going 'come back in 6 months' thing is ok I guess and my doctor said those words to me today..I said, I'd prefer to come back in three. ANd she agreed.

You will be fine and better than ever...Find the best surgeon you can and do it as soon as is convenient..

A few years after the first surgery the valve started leaking and I had the option to take meds and see how it goes...Was not the right decision even if it didn't damage my heart (and I bet it didn't help)...I saw another surgeon for a second opinion and he thought I should do it soon..I asked when and he said, "we can do it next week"... Instead of doing it, I let it go for 2-3 years until an Echo showed the valve severely leaking. Point is that my original surgeon (who did the second repair) was very easy going about it all...too easy going i think..for whatever reason some surgeons and cardiologists like this wait and see attitude that in hindsight was ridiculous considering my age, good overall health and activity level.

 

[AZ Don]

Welcome. You are lucky your Dr. was paying attention. The Denver Bronco's coach had an aortic valve replacement this season and only missed 4 weeks: http://msn.foxsports.com/nfl/story/...o-work-monday-after-open-heart-surgery-120213. I'm sure it was inconvenient but sometimes you have to do what you have to do. Here is a link that contains the surgical criteria for aortic valve replacement: http://familymed.uthscsa.edu/geriatrics/reading resources/Aortic Stenosis.pdf. See especially figure 3. Often in asymptomatic patients, Dr's recommend watchful waiting, until symptoms present or the echo results become a concern to the Dr. It may not be possible to predict when that will happen but at least the Dr. should be able to clarify what criteria he is looking for. I suggest that you discuss your concerns with the surgeon. It is likely that you will need surgery sooner or later so it is reasonable that you have some say in when it takes place.

 

[ski girl]

I had my first OHS at a time convenient to races I wanted to do - my cardiologist and surgeon thought timing surgery to events in my life made all the sense in the world.

However, if you read some recent posts on here about the accuracy of echos, it's probably worth getting that redone first!

Good luck from down under

 

[pellicle]

Hey Coach, welcome

Hi,

I'm new to the board and new to OHS, AVR and all the rest of the stuff

I thought I'd start my reply with a quote I read recently (thanks Clay) from
Aortic Valve and Ascending Aorta Guidelines for Management and Quality Measures [Annals of Thoracic Surgery 2013]

there are few, if any medical procedures that are
as effective in relieving symptoms, improving quality of life,
and also increasing long-term survival as much as AVR for
aortic stenosis (AS) or aortic regurgitation (AR),

if that doesn't make you feel better then almost nothing will

I am 50 yrs old. Relatively healthy - ran two marathons and about a dozen half marathons in my 40's.

excellent, so what you are saying is that your in the top percentiles for having a perfect recovery.

She also told me, that at this time there was no need to worry, this established a baseline and we would repeat the tests again in six months and see if things progressed. She let me know that surgery was in my future, but when, she could not tell.

sound advice

Thanksgiving 2013 had the tests repeated. No real change in the aortic aneurysm,

excellent!

Here is my dilemma.

I'm a planner. I need to know where and when things are going to happen.

(deep breath) ... ok here's my advice give it a rest on this one. Planning is well and good for many things but with this you just have to play it by ear. I would urge you to plan in such a way as to consider this the most important issue. Plan everything else around it. Be willing to alter the subordinate plans in favor of the primary one.

I can't over emphasize that until such a point in time that surgery is behind you, it should take priority over everything else in your life. That is not to say don't plan anything else, it is just to say keep clear what is #1

Only fools or the young or the ignorant really believe we have much control over life. You've already had your life saved by them finding the aneurysm (often called the silent killer because without a scan there is no way to know until its too late).

Control over life is an illusion. I know its harder to break that illusion if you've been immersed in it for too long

I welcome and thoughts and opinions

Prudent planning (to me) would be to take notice of what the Drs say and remember that. First and foremost you should heed their advice. If you're dead then all the other plans you made don't matter anymore.

Best wishes for the surgery and take you're recovery seriously. Don't over do it, don't rush at it, take small steps fwd every day (but none too big so's you slide backwards from over doing it).

 

[skeptic49]

Coach...I understand your concerns about timing. I'm curious, do you know what your mean and peak gradients are?

 

[epstns]

Hi, coach!

Your case sounds a bit like mine. I was about 52 when I was having a routine physical for another issue and the doc asked me "How long have you had this murmur?" Mine was also evaluated and categorized as moderate to severe aortic stenosis. We did the watch and wait thing for almost 10 years. I had the valve replaced at age 63, when my stats were just a bit worse than yours are now. All the way to a valve area of about 0.8 cm2, the only symptom I had was decreasing energy level and exercise tolerance. (Yeah, I was a gym rat, too.)

I became one of the bad examples - poster boy for the speed bumps we can hit on recovery. Not to say that you will do the same. Just to say that in spite of all that, I'm now about 3 years out from surgery and feel better and can do more than I could do in the years leading up to the surgery.

I would suggest that you find doc's who will discuss your situation openly with you, allowing you to make as many of the decisions as possible. They will likely not want to operate on you as long as your odds of death without surgery are less than the odds of death from the surgery. That's how they work. If it becomes a case where you are more likely to die without surgery than with, they will vote to proceed. You may have to have a "heart-to-heart" with them to explain your own desires and find doctors who will work to your schedule.

In any case, you're in the right place to learn all about what's in store for you. Welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. Visit often. Ask all the questions you can think of -- people here are a wealth of first-hand knowledge and are most willing to share.

 

[HopefulHeart]

Your situation is very similar to mine. I found out at age 32 that I had a congenital bicuspid aortic valve and an ascending thoracic aneurysm. This was after going to the Dr for a sore throat and they said, "oh, by the way, you have a heart murmur." I had no clue up to that point. Always been healthy. As for planning regarding the surgery......my guess is that the surgeon will want to proceed with surgery now. I say that because my Cardiologist recently told me that the new recommendation is surgery if the aneurysm is 4.5cm or larger and you also have a bicuspid valve. They tend to delay the surgery until the aneurysm reaches 5cm if you do not have the bicuspid valve. It's great that they discovered the aneurysm when they did. But I agree that it can be a frustrating situation to be in when you want to just get everything fixed and be done with it. I'm starting to feel that way with the high cost of yearly scans. Good luck to you!

 

[Rachel]

Hi Coach!

I've met a ton of BAV people in person, some on this forum and some through another - and whenever we get together one of the long standing jokes among us seems to be - "yeah, so I went to my doctor for such and such and he/she said: 'has anyone ever told you that you have a heart mummer?'" - that's pretty common and we're the lucky ones who get that one doctor (in my case it took 45 years for someone to notice) who says "hey you need to get that fixed" - especially if you have an aneurysm!

As far as timing - I'm with Pellicle on this one - he states it very well and IMO is worth repeating - this is your life after all.

(deep breath) ... ok here's my advice give it a rest on this one. Planning is well and good for many things but with this you just have to play it by ear. I would urge you to plan in such a way as to consider this the most important issue. Plan everything else around it. Be willing to alter the subordinate plans in favor of the primary one.

I can't over emphasize that until such a point in time that surgery is behind you, it should take priority over everything else in your life. That is not to say don't plan anything else, it is just to say keep clear what is #1

Only fools or the young or the ignorant really believe we have much control over life. You've already had your life saved by them finding the aneurysm (often called the silent killer because without a scan there is no way to know until its too late).

Control over life is an illusion. I know its harder to break that illusion if you've been immersed in it for too long



Prudent planning (to me) would be to take notice of what the Drs say and remember that. First and foremost you should heed their advice. If you're dead then all the other plans you made don't matter anymore.

 

[Mentu]

Reading your post, I found myself thinking that my experience was very similar. At our first consult, my new doctor asked "Has anyone ever told you that you have a heart murmur?"...you kinow the rest. It took mine longer to degrade so I was 59 at the time my valve was replaced. Test results can certainly be misinterpreted but more often they do give good indicators. At 0.9 cm2, it is definately time to speak with a surgeon who will very likely want another echocardiogram or a heart cath to better characterize the condition of your valve. As for timing, your surgeon is one of the most expensive experts you will ever hire and he will discuss with you the time frame he thinks is best. Its just not a decision you make arbitrarily. This is this person who is going to hold your heart in his hand and repair it; you need to be confident in him. If you hire an excellent surgeon and don't want to take his advice, then you have chosen the wrong doctor.

Larry

 

[Coach Kilby]

Thank you for all the great responses. I appreciate the advice, the wisdom and the experience of you all.

AZ Don - thanks for the links. I did hear about Coach Fox and saw him on the sideline this past weekend. Amazing story.

Skeptic49 - From my first tests the Mean Gradient was 21 mmHg and the Peak Gradient was 35 mmHg. At the Thanksgiving tests the Mean Gradient was 24 mmHg and Peak Gradient was 40 mmHG.

pellicle - Thanks. I do know this is out of my hands, thats the hard part. I've wanted to control things, fix things, figure things out my whole life. I appreciate the advice.

epstns - Thanks. I know I will have valve questions for you.

 

[AZ Don]

"yeah, so I went to my doctor for such and such and he/she said: 'has anyone ever told you that you have a heart mummer?'" - that's pretty common and we're the lucky ones who get that one doctor (in my case it took 45 years for someone to notice) who says "hey you need to get that fixed" - especially if you have an aneurysm!

I have a hard time understanding just what those Dr's were listening to all those years with their stethoscopes! The first time I was told I had a heart murmur was AFTER I had found out I had an aneurysm by way of a PET scan. And 3 Dr's missed it on the report! I only found out because I asked for a copy of the report, actually read the whole thing, and then googled "dilated aorta" to find out what it meant.

To add to Pellicle's comments, I would say that imho it is better to have the surgery early than late. If you are in the middle of football season and a Dr. tells you it's time, you could be risking permanent heart damage, or worse, by waiting.

 

[skeptic49]

Skeptic49 - From my first tests the Mean Gradient was 21 mmHg and the Peak Gradient was 35 mmHg. At the Thanksgiving tests the Mean Gradient was 24 mmHg and Peak Gradient was 40 mmHG.

Thanks for sharing these numbers. Each of us has our own reality to deal with and no "one size fits all," but let me share my numbers with you for comparison. On my last echo my gradients were 34 mmhg mean and 53 mmhg peak with a calculated valve area of 0.8 cm2. My cardio feels that this means that I have moderate to severe AS, but surgical intervention is not on the immediate horizon for me...we're not talking about dates and timing at this point. Again, this is me, and you are you, but it may be that you have more time than you think before you need to have AVR. Certainly a mean gradient of 21 mmhg is pretty far away from the 40 mmhg severe AS marker. So you're in the right place here to get opinions and compare notes with others. Keep that up!

Jim

 

[HopefulHeart]

AZ Don......I hear what you're saying about having a hard time understanding what the Dr's are listening to. I have the same feeling. Even after I found out about my heart problem and made other Dr's aware of it during exams, they would look at me and say, "I don't hear any heart murmur." I'm like, really, you don't hear anything?? And talk about missing things on reports....my mom had an annual physical with her general MD and thought she heard him say something about a BAV. She forgot about it, but then remembered 1 year later at her next annual physical and asked the Dr about hearing him say something about a BAV. He told her, "No, I would have called you." She asked him to check his records again, he then looked at her in amazement and said, "You know what.......you DO have a BAV. I don't know how I missed it." It's all a little scary in a way.

 

[clay_from_nj]

I do kind of miss every doctor calling in his associates to listen to my murmur. On the echo, it sounded like my old dishwasher. The best was the GP whom I could clearly hear out in the hall discussing me with his nurse and bemoaning the fact that he didn't have any students or interns around to share me with.

 

[pellicle]

Hi Coach

pellicle - Thanks. I do know this is out of my hands, thats the hard part. I've wanted to control things, fix things, figure things out my whole life. I appreciate the advice.

I'm an engineer ... planning is my middle name, so I know how you feel about being a control freak (well only non control freaks think we're freaks) ... add to that I'm now a database specialist and you can include CDO (which is Obsessive Compulsive Disorder ordered properly into alphabetic sorting) to the list.

;-)

 

[shanwow1]

I do kind of miss every doctor calling in his associates to listen to my murmur. On the echo, it sounded like my old dishwasher. The best was the GP whom I could clearly hear out in the hall discussing me with his nurse and bemoaning the fact that he didn't have any students or interns around to share me with.

This happens to me all the time too! Also every time I go to the walk-in clinic for something unrelated like a cough and they listen to my heart, it is funny to see their eyes get wide and then they usually say something like, "Wow, that's a very loud heart murmur". My cardiologist also once sent in her intern ahead and he had to examine me and see if he could figure out my diagnosis without asking me any questions. I started laughing hysterically because he kept listening to my heart, then looking at me quizzically, opening his mouth to ask a question, realizing he wasn't allowed to do that, and then listening again. I will miss that. But then again if I go mechanical I might have loud clicking noises to suprise people with, and there will always be the cool scar to show off

 

[dornole]

Funny . . . I had about a dozen different interns & residents come listen to my rheumatic heart murmur when I was in the ICU, since it is not very common in the U.S.

 

[pellicle]

...there will always be the cool scar to show off

wear it with pride!