New to site!

[cquinn]

Hi all.

I am a 41 year old husband, and father of 2 wonderful children (8 and 5), who recently learned that he has "mild to moderate aortic insufficiency", "nodular calcification at the base of the commisure between non and left coronary cusp", "mild mitral regurgitation", and a "mildly dilated left ventricle" -per an echocardiogram and the reviewing doc's report.

I've been pre-hypertensive most of my late teen/adult life and only started on BP meds in my early 30s. My gut tells me that it has been the chronic BP issue which may have led to my valve issues.

I have been very active most of my life, and until recently worked out hard 5-6 days a week (Cross-Fit style). Now, without further input from my doc, I'm scared to even think about putting undue stress on heart.

Suffice it to say, like so many others, I am a bit freaked out. While I know enough to lose sleep at night, I don't know enough to be assured things will be OK. Finding this web site has been a Godsend. I stare at my echo measurements and try to glean info (based on what I find on-line) but I'm still unsure. I just keep returning to conclusions listed.

I have yet to see a cardiologists, as my primary care doc (an internist) thinks we can manage this with echos every six months and my continued use of a ace inhibitor/calcium channel blocker combo. He didn't seem overly concerned when we first reviewed the report, but now that I've done some research I feel as if I wasn't getting the whole story. I mean, never once did he mention the inevitability of OHS and valve replacement. I almost felt as if I was led to believe that this could reverse itself. From what I've learned, that's not the case. Instead, I have landed myself in the 'waiting room', or so it seems.

There's actually more to my story, which I won't bore you all with now. For the time being I just wanted to introduce myself. It makes me feel better just to share this with folks who know. I'm sure I'll have tons of questions in the months and weeks to come. There is one I'd like to ask at this time:

Is the progression of aortic valve regurgitation (insufficiency) varied? I mean, is it an individual process from person to person? Is it possible to go years, even decades before progressing to a point where either symptoms present or surgery is otherwise needed? How long can one stay at mild/moderate? Can I affect the progression; slow it down?

Like everyone seems to say, the waiting is the hardest part. If my aortic valve is broken, why can't we just replace it now?! What is the reason anyhow?

OK, I know I said one question, but how about this:

What are the most important measurements contained on my echo report and why?

Sorry for the long winded post. I'll try better in the future.
To all of you on this board who I see providing support: God bless you. You're inspirational in my eyes. Know that you not only provide great information, but a level of comfort that sometimes is missing for folks going through this type of trial.


Regards,
Chris

 

[Lynlw]

Hi, Glad you found us, sorry it is because you got bad news and so are upset, hopefully the more you learn the more you will be able to relax a little.
First, I don't think your doctor was hiding anything from you, yes everyone progresses at different rates and it is quite possible for someone who has mild valve problems to never need surgery or any interventions, especially if you made it until your 40s before it was discoverred. Many/(most?) people would show some mild valve stenosis or regurge if they had echos done.

Why did you have the echo done? were you having some kind of problems? I personally think you'd probably feel better if you went to a Cardiologist just to get their opinion.

 

[cquinn]

Thanks for your reply Lyn. I notice you're in NJ. I was born in Teaneck and raised in Bergen County (Glen Rock) before moving west.

To answer your question: my doc has always been very proactive, and I have always been overly cautious with matters of the heart (because of my BP issues). He sent me for the echo after hearing a slight murmur (but also, probably, to reassure me.) Either way, we got it done and now we have this info.

Thank you also for the info you provided. It's good to know that perhaps surgery isn't a forgone conclusion. Either way, I'll remain attentive to my condition and hope for the best, while educating myself as much as possible. Thanks again!

Chris

 

[Lynlw]

Hi, We're in the other end of Nj, Philly burbs not NYC.
I think learning the most about your heart what the different parts are and how they work is one of the best things you can do, so when you talk with your doctors, you know enough to understand what they are saying AND think of follow up questions.

Hopefully they will just watch it for a years and who know even IF you ever need a new valve, did you see thread earlier on the percutaneous valve study (valves replaced by cath) exciting things are happening

Also unless your doctors give you any restrictions, I would keep up the excercise, IF you ever do need surgery, going into it in the best shape possible can only help with the recovery..

OH you asked about what numbers are important, I didn't mean to skip that but since you are watching different parts of your heart, different sets of numbers would be more important depending on the problem.

 

[Freddie]

Hi Chris and welcome. Sorry I can't help you, I just wanted to say "hi".

 

[reedonator]

Welcom Chris!

Welcom Chris!

Hi Chris,
Welcome to this site! You will find a wealth of information here that you often will not hear from doctors. I am 43 and am 4 weeks post aortic valve replacement. I was diagnosed with severe stenosis of my AO valve on Feb. 10, 2011. I work as a firefighter and I do a lot of bike riding, 3800 miles in 2010. I hadn't really experienced any symptoms until I passed out one day about 45 minutes after a really tough bike ride. I initially attributed it to dehydration but still decided to make an appointment with my doctor to get a check up that was long overdue. I had a heart murmur that was initially discovered when I had knee surgery five years ago. At my checkup my doctor noticed that my heart murmur had gotten significantly louder and combined with my incident of passing out she decided to send me to the cardiologist. My cardiologist put me through 12 lead EKG, Stress Test, 24 hour heart monitor, tilt table test, and echocardiogram. I performed fine until I had a positive result on the tilt table test and my echo showed severe stenosis of the AO valve. I had an angiogram performed on Feb. 25th and that showed the opening in my AO valve was less then .8 cm when it should be at least 3 cm. They scheduled me for surgery on March 4. I am not saying this to scare you but your good fitness level may actually be masking the problem. Your doctor is probably really good but I highly recommend seeing a cardiologist. I wish you the best and feel free to ask a lot of questions.

Kevin

 

[Natina13]

Chris
Welcome to the "Waiting Room"....you have come to the right place...these people here, have a ton of knowledge and are very caring compassionate people. I agree with the others....... you need to get a second opinion or more if need be. My Cardiologist misdiagnosed my problem, so I took my angiogram DVD to a CardioThorasic Surgeon to get a second opinion and am so grateful I did. Doctors are human-beings, mistakes can be made, no one knows your body better than you do, your in it...so always trust your instincts and become your own advocate.
Best of luck and caring positive thoughts being send your way...
Renee

Go Team 2011 !!!!!

 

[Mentu]

Hi, Chris, welcome to our community. My valve problem was first diagnosed by my family doctor about ten years before I had surgery. The first thing she did was to make an appointment for me with a cardiologist. I do not think it is unreasonable for you to insist on getting a second opinion from a cardiologist. If nothing else, you will feel more confident that your condition is being managed properly and he or she can discuss with you any restrictions you need to observe. From the beginning, I kept asking my cardiologist why my valve couldn't be replaced NOW if it would never improve? I think the answer is that cardiologists try to weigh the danger of doing nothing against the risk of surgery and they seem to always lean in the direction of doing nothing because that normally presents less immediate risk since for many people the valve will degrade very slowly. It is only through regular monitoring that you and your doctors will know how quickly your's is changing; in that your doctor was correct in proposing semiannual tests. As part of your own education, I would encourage you to get a copy of the first test results and keep them in a file with each new test. This will allow you to follow the state of your problems and warn you of any change. If your valve does begin to degrade more rapidly, you then will have a basis for lobbying for early intervention. Chris, this will also help you to be your own advocate.

Larry

 

[Greg a]

Chris, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking ,there is a wealth of knowledge here for the future .....


-Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

-what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf[/

 

[Michellemar]

Wanted to say hi, and welcome a spot that there are so many caring get-you-through-it people! You'll soon be glad you got here!
Remember that TEETH...oral hygiene can go with murmurs, also, if you have any preexisyting conditions be sure your Cardis knows. Somehow, in the thick of it past radiation wasn't being followed in me though I saw my cardio regularly, and my arthritis dr. Was the one who got suspicious, sent me back to my cardio, and my over 90% CLOSED RCA was summarily found and stented. My cardio said I was the one who gave him his grey hair. Michelle:smile2:

 

[ALCapshaw2]

Welcome Aboard Chris -

It is good that your Heart conditions have been found before they became critical.
You would be wise to obtain copies of ALL of your echos and other tests / lab reports.
I transcribe all of my echo report data to a spread sheet for easy comparison and tracking.

If I were in your shoes, I would want to establish a relationship with a cardiologist so that you will be able to get to know each other before 'it is time' to get your heart fixed. With only one echo, it is hard to know if or how fast your conditions are progressing. I'm thinking yearly echos would be appropriate unless you develop symptoms such as shortness of breath with exertion which should be re-examined.

One Question about your condition comes to mind, namely, what is causing your Aortic Insufficiency (a.k.a. Regurgitation or 'back-flow')? This might best be answered by a Cardiologist.

Numbers of interest would be your Chamber Sizes (to be sure your heart is not enlarging),
Ejection Fraction (typically 50 to 65%) which represents the percentage of blood that is expelled from your chambers with each 'pump', Effective Valve Areas, and Pressure Gradients across each valve.
An Effective Aortic Valve Area of 0.8 cm sq is a common 'trigger' for recommending Aortic Valve Replacement due to 'Aortic Stenosis' (which was not mentioned in your report so is probably not a factor at this time).

We have an expression that goes "The Worse it Gets, the Faster it gets Worse" which is especially true for Aortic Stenosis (narrowing of the Aortic Valve). OTOH, we have had people in the "waiting room" for YEARS, so yes, progression is a highly individual parameter and should be monitored regularly (at least annually, more frequently if changes are becoming evident).

The GOOD NEWS is that just about anything and everything that can deteriorate in the Heart can be FIXED with High Rates of Success by knowledgable and experienced Surgeons.

'AL Capshaw'