New member here

[photogman]

Greetings and Happy Holidays forum members!

I'm new to this forum. Little bio here....50 years young male. Live in midwest. Medical History....2 year renal cell carcinoma (kidney cancer survivor), partial nephrectomy 9/12/03, very fortunate thus far considering the type of cancer! ,Type II diabetes regulated through diet only at this point, mild hypertensive, bicuspid aortic valve:

Vmax = 2.8 m/s
max gradient = 30mmHg
mean gradient = 19mmHg
LVOT Dia = 2.3 cm
LVOT Vel = 1.1 m/s
valve area = 67 cm2
press 1/2T = 610 msec

Triscupsid
Jet Ht = 2.3 m/sec

Cardiologist believes I am still a few years away. The city I live in hosts the top heart hospital in the state. That being said, when it is "my time", I intend on going to Mayo at Rochester, MN or Cleveland Clinic at Cleveland, OH with the preference for Cleveland given they have about the lowest mortality rate in the country when it comes to valve replacement and I believe they do about 1200 a year or more there. My cancer surgery was pretty stressful and scary, but I thought I was pretty good at handling it and had surgery on a friday afternoon and was discharged from Mayo on Monday morning, absent most of my right kidney. But the heart thing kind of stresses me out even though it is years away. I have this fear that if I do make it through the surgery, that the valve will malfunction and just stop clicking. I know that people survive this type of surgery everyday, but it's also not a walk in the park. My question to the forum is if a person is able to maintain their general health otherwise and maintain the coumadin levels where they are supposed to be consistently, is there any reason a person can't live a normal lifespan or even a long life if it's in your genetic code? Thanks for your response.

 

[geebee]

Welcome to our second home. You have found a great place for help.

There is absolutely no reason a valve replacement patient (on coumadin or not) should not have a normal life expectancy. In fact, some of us feel we might actually be ahead of the game as we are partially bionic.

Facing heart surgery is indeed stressful but you have experienced a lot of that type of stress already so you are ahead of the game. Congratulations on getting through such difficult times.

Heart surgery is not very dangerous from a statistic standpoint but problems do occur. However, most of us have made it through without restrictions.

I wish you well in your journey. Let us know how we can help.

 

[Mary]

Gina just answered your question and I can only echo her thoughts. You should lead a normal life (whatever that is! ) after replacement.

I'm glad you've joined us.

 

[RCB]

Sure it is possible!

Sure it is possible!

If it weren't, I wouldn't be here posting(although some wish I wouldn't)
Cleveland took care of my CRF-creatine of 2.5, they are very careful there.
Go there, get your valve- it will work. You will be fine!

 

[ALCapshaw2]

Welcome Photogman !

Most (all?) of our BAV patients seem to end up having surgery. Did you cardio talk to you about aneurisms and connective tissue disorders that often accompany BAV? Just something to watch for when having your echo's.

I don't remember the normal ranges for gradients and velocities, but increasing gradients suggest a narrowing valve. Your valve area number (67) does not seem right. There should be a decimal somewhere. Generally, an effective valve area of 0.8 cm^2 or less is considered a trigger for surgery.

You should know that many (most?) cardiologists like to take a "wait and see" attitude with regard to Valve Replacement Surgery. Most SURGEONS like to operate BEFORE Permanent Damage is done to the heart muscles / walls. I agree with the latter approach and recommend lining up a surgeon BEFORE you become critical and letting him decide on the best time to proceed.

SO, put on your reading glasses and find that missing decimal! (NOBODY has an effective valve area of 67 cm^2...that would be equivalent to 8 cm by 8 cm or 3.2 inches by 3.2 inches ! )

'AL Capshaw'

 

[gijanet]

Just wanted to welcome you..............

Just wanted to welcome you..............

RCB, Geebee, Karlynn, Medtronic and Joe are our valve mentors. I would say that they are testimony that valvers can lead long, productive lives.........if not "normal" ones!

Hugs. J.

 

[aussigal]

Hi and welcome from me...

i am another BAVD customer sitting here in the waiting room enjoying the company of these fabulous people, and learning heaps and heaps about my condition...

but best of all the advice and empathy from those who have been there and done that just overwhelms me ...

these guys are the BEST and this is the BEST place to wait-out valve surgery.


WELCOME WELCOME WELCOME....

 

[epstns]

Hi Photogman, and welcome to The Waiting Room -- the virtual room in which many of us await our own turns at valve surgery.

I'm another "probable" bicuspid valver, and like you, we think I'm a year or few away from replacement. My own opinion on the longevity issue is that our genetics dictate many of the factors affecting life span, but I also feel that we may have a slight advantage, in that most of us are very carefully monitoring our health, both before and after surgery. That way, we may tend to be diagnosed and treated for other conditions before they reach levels of severity that might affect life span.

Just my $.02 worth -- makes me feel better to think of it that way.

 

[Karlynn]

If you've been through kidney cancer - I'd say you've already experienced stuff much harder than valve replacement and a life on Coumadin. And because you've been through cancer - you already know how life altering events give you a hightened appreciation for life.

I've had my St. Jude mechanical for 14 years and have led a very "normal" life. I've raised 2 children, with all that includes (sports, stress, activities, stress, fun, stress ) I've traveled to France, Italy, Turkey and Greece and we're making plans to go back to Italy next year for our 25th anniversary. I also have 2 part-time jobs, one of which has me on my feet for 8 - 9 hours a day.

I've tried to slice off almost every finger while cooking (really, my cooking is pretty good. ), banged my head, arms, and legs with no major problems. I home test my INR weekly (blood test to keep the correct dose of Coumadin) and that's really the only time that Coumadin makes me take more than a minute out of my life.

Welcome!

 

[tobagotwo]

Al beat me to the punch on the valve size.

If the "67" is correct, it would be .67cm², which would certainly put you closer than a couple of years away, unless you are rather small-boned. If it is .67cm², and the cardiologist is not concerned, you should consider seeking a second opinion, preferably with a surgeon or at least an unaffiliated cardiologist. That is not with intent to set up surgery, but to entertain a possibly divergent viewpoint. Cardiologists tend to want to avoid suergery as long as possible. Surgeons tend to want to pick a point at which they feel the heart has the best chance for fullest recovery.

Perhaps the cardiologist believes the reading to be inaccurate. Your gradient isn't very high for a .67cm² valve. It might be more appropriate to a .97cm² valve opening. Do you have other heart issues that might affect the pressure gradient? Do you have an EF (ejection fraction) estimate?

Surgeries on patients with symptoms are generally accepted at .9cm² or less. In general, most heart surgeons seem to draw the line at around .7cm² or so for an average male (.6cm² for a female), even without symptoms. However, cardiologists tend to be very conservative about sending their patients for surgery, and may delay to an extremely small annulus size, based on whether the patient perceives himself to be having symptoms.

Two things do not support this approach in my opinion. The foremost is that the patient can be the worst judge of his own symptoms. Many times, the patient's energy and performance level has dwindled very gradually over time, and is passed off as aging or lack of proper exercise. Angina is often atypical, such as a mild tightness in the throat or even jaw pain (common in women). The patient can also be the victim of his own psychological denial mechanisms.

The second reason is simply that a certain percentage of patients simply do not display symptoms at all. Some of the people who drop dead from shoveling snow fit this model, as it also greatly aggravates the likelihood of having a heart attack under physical stress. About 30% of AS patients also have coronary artery disease (CAD). Interestingly, those with bicuspid valves are less likely to have CAD.

Sometimes, to discern the patient's condition more fully, the cardiologist resorts to treadmill or exercise echocardiograms (a.k.a. a "stress test"). The ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease recommend that patients with aortic stenosis specifically not be given exercise stress tests, due to the heightened danger for the patient and the fact that results from AS patients tend to be inaccurate anyway. If that is suggested, consider this from the American College of Cardiologists/American Heart Association Guidelines: "Exercise testing in adults with AS has been discouraged largely because of concerns about safety. Furthermore, when used to assess the presence or absence of CAD, the test has limited diagnostic accuracy...Certainly, exercise testing should not be performed in symptomatic patients." http://www.acc.org/clinical/guidelines/valvular/jac5929fla16.htm#A1a

Classically, the concern the patient should have is over enlargement of the heart, which generally accompanies the added stress. The heart does remodel (devolve back toward its original size) after surgery, but after a certain point, the chance for complete recovery slips away. It is important to maintain and compare your echo results over time, particularly to observe heart enlargement. Frequently, cardiologists just look to see if the heart (especially the left ventricle) is larger than the guideline, but don't pay much attention to its total change over time, which seems equally important.

Whew. Sorry. Unintentionally long-winded.

Best wishes,