Newly Diagnosed, and Scared Spitless!

[epstns]

Got the news yesterday -- This was the result of follow up to the *usual* question at a routine phyical (how long have you had the murmur?).

Cardiologist's associate (mine is away until Jan. 02) simply read the echocardiogram report. . . "moderate aortic stenosis, doppler gradient 44 mm Hg, along with mild mitral regurgitation."

I am totally stunned - as I am a 55 yr old male, in pretty good health and physical condition. I regularly (for the last 20-some years) run 3 to 4 miles daily, at a pace of 8 min./mile, without any noticeable symptoms. My BMI is about 22, weight well controlled, and have followed a low-fat diet for 19 years. In general, I did not expect THIS.

Now, here's my real problem. As soon as I got off the phone with the cardiologist's office, I jumped right on the web to do some research. The results were simply stunning and have scared the he** out of me!

Can anyone who has had a similar situation give me any idea what to expect next? Any way to estimate the general progression of this disease? I have lived a very active life so far, and don't want to become my wife's favorite vegetable.

 

[Kevin M]

Your initial reaction to the news is normal and understandable. I think we all go through the initial shock and have to deal with all the "what if" scenarios.

Depending on the level of stenosis and regurg., you may not require surgery at all. A lot of times they will just do regular ECG's and EKG's to monitor deterioration. People can go decades without requiring surgery.

It seems they've already done an echo, so the next test would likely be a TEE. The transesophageal echocardiogram is essentially an ultrasound that is done by putting a camera down your throat and taking the pictures from the inside. They can get more accurate measurements this way to assess your situation.

The procedure sounds awful and some people tend to have no problem with it at all and others freak out and get all gaggy. I can't stand the dentist or anything to do with my throat and gag reflex - so I had a bit of a tough time with it. It is painless, but a little uncomfortable.

Should they feel it is necessary, the next test they would likely run is an angiogram. Here, they run a cathedar into your femoral artery and push the wire up into your heart. A lot of them appear to be done through the wrist these days. From what I gathered last time, there are certain instances where they cannot do it from the wrist and they must enter by the femoral artery. The wrist is apparently less painful. I've had 2 through the groin and yes, it's a little uncomfortable, but it isn't all that painful.

Once they are into your heart they release some dye and monitor it's flow through some sort of device. When they release the dye, it gives you a major hot flash from deep within and you feel like you've just wet yourself.

All in all, it's not that painful and doesn't take long to recover. I found my vasectomy more traumatic.

After these tests, they will know for sure if you need surgery (sometimes they'll know before running all the tests and are just using them to measure you up).

Depending on your situation, you may require either a valve repair or a valve replacement.

There are numerous options for valve replacement these days and I think you will happy to hear that they all result in very little sacrifice to your lifestyle after you've recovered.

Should you require surgery, there is no reason you should not be able to maintain a very similar lifestyle as you've had to date. This might not be the case if you didn't exercise regulary, eat healthy or had other complicating health related issues.

The initial shock is pretty severe, but I can assure you that it is just fear of the unknown that freaks us out. Once you understand all the nuances of your situation, I'll bet you'll feel better.

Should surgery be necessary, it will change your life, but you don't have to worry about being forced into a sloth lifestyle. You will be able to do everything that you do now.

This message board is great. Everyone is extremely supportive and I think you will find it a source of great comfort should you use us as a shoulder.

Use us to ask questions, deal with unexpected emotions or just know that we're all here pulling for you.

Feel free to private message or email me at anytime if you hit the panic button and need to chat.
Kev

 

[wweir]

SteveE,

Welcome to this site. Most of us have experienced the same emotions you are currently going through. I think that Kevin gave you some excellent insights as to what to expect.

I spent twenty plus years in the military and they never diagnosed me with any type of heart problem. It was only after my internist here in Lincoln Nebraska said those words ?Has anybody told you that you have a murmur?? that we had the right tests done and they found that I had a bicuspid aortic valve.

In my search for information I was fortunate to find this web page that is full of caring folks that have all gone down the same path. The information here is quite extensive and even better yet you can get real world advice and questions answered in a most straight forward manner. As a result of this great information, when my date with surgery came up this summer, I was very calm and sure that everything would turn out all right.

So today I am back at work, exercising every day, feeling great and enjoying life like I never did before.

While you feel scared at this point, rest assured that today?s medical technology coupled with very skilled doctors, surgeons and nurses are really on your side and will fix what every problem you have.

Keep us posted as you go forward.


Walter

 

[alicia]

Welcome! Sorry you had to find us, but everybody here is so supportive and you will get many questions answered here. The process to determine the extent of your valve damage is scary but
its something you must take one step at a time.

Please keep us updated as to your condition and feel free to ask as many questions as possible.

best of luck to you!!

 

[Nancy]

Hi Steve-

Welcome to this terrific site. Kevin gave you a wonderful answer.

I think it's safe to say that with very few exceptions, everyone here has had a similar reaction or has a loved one who has. It's normal to be panicky. But trust me, you won't become a vegetable. Your cardiologist will monitor you carefully and in many instances, if things aren't too bad, you can be managed with medication, testing and close care of a cardioligist. You have to take it a step at a time. Wait to speak with your regular cardiologist, and then get his take on it. He might order more testing, and he might not. I take it from what you have said that you aren't having any symptoms at the present time. That's good news. The other good news is that you have taken excellent care of yourself all these years. So your body will be in great shape for anything that needs to be done.

Be very, very thankful that this problem was discovered so that it can be watched and taken care of.

We had a friend who found out that she had a heart tumor (benign), just out of the blue, like you. She was also in good physical shape, played tennis and went to the gym. A tumor like that can kill you just like being struck with lightening. No warning. She was also panicked. But she's had her surgery and did very well, and is back to work.

So someone above was watching out for you.

Take care and come here often. We'll hold your cyber hand.

My husband is the patient, and he's had 3 heart surgeries, plus lots of other things.

 

[wlaldridge]

Welcome-epstns

Don't let it "freak" you out, but don't ignore it either.

My experience is similar to yours, at 52 years old(7 years ago) my doc asked the same question about the murmur. I said "I don't have a murmur, 30 years ago the navy docs thoutht I had an "odd/funny sounding heart" but didn't stop me from flying, etc, etc. " My doc says YOU HAVE A MURMUR. Went for echo/stress test. Nailed it 16 minutes 175 heart rate. No symptoms or events. Diagnosed with moderate aortic stenosis, probably bi cuspid valve with stenosis. Might need valve replacement in 15 or twenty years.

Did take antibiotics before any invasive medical procedure, especially dental work and cleaning. Defective valves tend to be seed points for bacterial infections that are very serious.

Had no further testing due to change of doc and insurance pickiness. In February as and after thought during my physical I asked for another echo to see how my valve was progressing. Didn't get the result till 5 months later and I was shocked went to severe stenosis. Still no symptoms. New cardiologist read echo, listened to the heart and said "surgery soon, not a year but a few months". I demanded another echo and the valve was in fact closing down another 15%. The wake up call. Now,the opening is normally 2 cm squared and in 1995 I was at 1.01 cm sq. but did not know what normal was and though I had been like that since birth. In Feb 2002 I was down to .7 cm sq and in July it was .61 cm sq. I had the operation on September 12, 2002 and never got to real symptoms. I would likely have just dropped dead, which is one mode of failure for defective aortic valves, they over work the left ventricle and it gets thicker and thicker then just stops working-Game over dude.

The onset of symptoms and the speed of stenosis dictate the need and timing of surgery. Every one is different. Mine progressed very fast compared to most. There are other causes for aortic stenosis other than my bicuspid valve which might affect the progression of the stenosis. But in most cases the progression is faster in the later stages.

If and when you might require surgery, which we will pray that you don't, the fear and waiting will be the worst thing. I was certain that I had had a death sentence. As it turns out, there are lots of things more painful and difficult to deal with. (Ask me about kidney stones) Now, this is a life threatening disease and the surgery is LIFE SAVING with great survival statistics-thank goodness.

Thanks to the management, pain is not a big problem with the surgery. The better your physical condition, I think the better the recovery from the surgery. This is one of those things that fall under Franklin Roosevelt's famous "The only thing we have to fear is fear itself."

Follow the many helpful threads on this wonderful forum. This "family" of good folks got me through this life changing event and kept me semi-sane in the process.

Come in often and ask any questions that you can't find answers for. There are a lot of very knowlegeable and compasionate, helpful people here for you.

We will be there for you and pray for positive outcomes in all that you face.

Thanks for joining us.

Bill

 

[wlaldridge]

My post was being prepared to post and Walter and Nancy got theirs up ahead of me while I was busy composing. Didn't mean to be disputing what had been said, but there is no assurance of warning symptoms. As in my case, symptoms never came and if I had not believed the numbers, I might just have had "the big one"

Walter had his surgery just a month before me and was my great inspiration going through all of this.

Nancy is the rock with solid advice and more strength of character than most anyone I have ever met.

 

[Nancy]

Right you are Bill, buddy. Everyone's different. I deleted that part of my comments.

 

[tomtom]

Recognise your fears and worries all too easily - I felt exactly the same way three years ago - but am happy to say that valve replacement surgery probably saved my life and I've been fit and well ever since. To cut a long story short I was diagnosed with aortic stenosis as a child, but had no restrictions placed upon me other than regular check-ups at cardiology. At the age of 43 I collapsed on the squash court (the docs knew that I played and didn't restrict it) and the subsequent ambulance took me into a few months of great fear and anxiety. They did the angiogram thing - which with the help of sedatives and anaesthetic was completely painless - and decided to give me a mechanical valve. Now's not the time to go into details of the surgery and recovery period but I've completely recovered and am probably fitter and more active than ever before, and I was pretty active already in the first 43 years of life. I have to take warfarin (coumadin) which is no big deal, though I've given up contact sports - I was getting too old ever to be picked for Scotland at football anyway! I walk, jog, cycle, swim, play tennis, go to the gym etc. etc. Only bummer is that I'm too fit to give up work!

Hope some of that helps, and all the best!

 

[BillCobit]

"Any way to estimate the general progression of this disease?"

Some people go on for years under cardiologist observation, some deteriorate rapidly. It's important that you follow through on regular evaluations. It's possible to feel great, but have severe underlying problems. In many cases...particularly with physically fit patients, there may be no classic symptoms of valve disease...so you have to rely on echocardiograms and angiograms for an accurate assessment of your situation. In my case, surgery was indicated due to measurements of ejection fraction and heart size, not because of any outward symptoms.

"I have lived a very active life so far, and don't want to become my wife's favorite vegetable."

Valve surgery doesn't mean you're sentenced to become a vegetable. I had valve surgery in Jan '02. Although I'm still recovering and whine about reduced exercise tolerance (compared w/ pre-op), I've been pretty active throughout the summer and fall -- 3 short course triathlons, a 4 day bicycle tour through the Adirondacks, a 10K run. Plus all the training that goes into getting ready for that stuff. I'm no star athlete, but my condition doesn't keep me from any of the activities I enjoy.

I'll reiterate -- be sure you follow through on regular checkups. If you end up needing surgical intervention, it's important to get it before your heart suffers significant irreversible damage. And if you do need surgery, do your homework to make sure you're in the hands of a skilled surgeon at a good hospital. I had my surgery at the Cleveland Clinic. The travel was logistically inconvenient, but I have absolutely no regrets, as I feel I got a result unavailable elsewhere.

Hang in there, and come back to this wonderful forum whenever you need advice or moral support. We all empathize!

 

[Lorraine]

Steve,


Welcome to our VR.com family. Kevin gave it all to you in a nutshell. The initial shock of what is happening seems devastasting when you first find out, but believe me it isn't as bad as you think.

I started really getting regular physicals done when I turned 35, in 1985. I was never told I had a heart murmur until November 2000, about a month after my 50th Birthday. I was in SHOCK! WHo me? There is Heart Disease in my family, but no one in my family had valve problems. My Dad had died in 1988 of a Heart Attack. It was his third one. The cardiologist had told him he needed by-pass surgery but my Dad was too afraid he wouldn't make it off the operating table so he didn't get it done.
I on the other hand, as soon as I found out I needed surgery after I had all the various test mentioned above, was anxious to get it done. I was told that a mechanical valve would be my best choice because of my age.

Looking back, I would say I started having symptons 1999 though I didn't realize it at the time. I had started commuting to Chicago on the train, the fall before, and I would walk from the Metra to Wabash and Jackson. After a while I noticed when I came home my ankles and feet were swollen. I just figured it was from the new regime off walking everyday. Never linked it to having edema and heart failure! This went on for about 6 to 8 months during which I was having more and more shortness of breathe! My family doctor was treating me asthma medicine said I had chronic bronchitis both of in the end weren't true. In A
ugust of 2000 I had a come home from work and had a nose bleed that wouldn't stop and had to call an ambulance to take me to the hospital. I was told there I had high blood pressure, which I never had high blood pressure before. I went into denial as they gave me a nitro-glycerin tablet and told me I would have to be on them the rest of my life. My Dad had taken them and I couldn't believe that I, at 49 was now on them too. My doctor when I saw him said we should monitor my blood pressure first for a month to see if I really needed to be on the tablets. Within that month in a half, my breathing got so bad I demanded more extensive testing to find out "Wat the HECK" was wrong. Well, guess what? I didn't need to be on those tablets, I didn't need to be on asthma medicine or predisone, I needed valves replaced. My arteries okay. I had all the usual worries and unfortunately I didn't find this great forum until after surgery. It was still a God send to me.

I had my surgery on March 8, 2001 and returned to work June 3, 2001. I am happy to say, I can breathe great, I can keep up with all the commuters who would just as soon run you over if you can't keep up with the walking pace, which I couldn't before. I feel great and have a lot more energy. Believe me you won't become a vegetable after surgery!

I can't say enough good things about the people on this site. We come from all walks of life with for the most part a commom denominator. Our Significant others are just as supportive. as they share the common denominator becasue of their loved ones and are just as helpful.

Ask questions away as needed as we are all here to help and support each other through each and every step of the way. As Nancy said, we'll hold your cyber hand! Take care and God Bless.

 

[csutherland]

Lots of these people seem to get this diagnosis out of the blue. My husband had just had a Radical Prostatectomy (prostate cancer) in Dec, 2000 and the following Feb was preparing for hernia repair when the anesthesiologist said "how long have you had this murmur?" He wouldn't allow the hernia surgery to take place until Jerry had been checked out. An echo was done on the spot and the results indicated severe regurtigation of the aortic valve and moderate regurgitation of the mitral. He was put on BP meds and 3 months later those had fallen to moderate and mild respectively. He stayed on the meds another 6 months, keeping up his normal lifestyle (he was 63 and very active. The prostate cancer surgery didn't faze him a bit). We were stunned to get the echo report after 6 months that he now had severe stenosis of the aortic valve, requiring almost immediate surgery. He had it done in 2 months, Feb of 2002. He's now what he considers "back to normal". He is more careful than he used to be, but he is now almost 66.

 

[Rich]

A lot of us as you see have gone down the same road that you are on now.
I was told I had a murmur when I was in my late teens but it never stopped me from doing anything. Then in my mid-forties I had a physical and was told I had some mild aortic stenosis but nothing to worry about. Well that wasn't quite true, I should have taken it a lot more seriously.
The point is get checked on a regular basis at least once every year, I didn't and almost paid the price for it.
I had my valve surgery at age 58.
But you may never need surgery just keep tabs on it and keep up the good things you are doing to stay in shape.
I will say I feel capable of doing more now than prior to my surgery.

 

[Arlyss]

Regarding Aortic Stenosis

Regarding Aortic Stenosis

Hi SteveE,
So sorry to hear of your diagnosis. But today more than ever before there are wonderful solutions. There is quite a lot of variation regarding when heart murmurs related to the aortic valve are detected. My husband had a "slight" murmur at birth, which progressed over time to a very noisy murmur - he was born with a bicuspid aortic valve. His valve was replaced when he was about 49. But that was not the end of the story - he later developed an aortic aneurysm. And that is why it is very important to know whether your valve is a normal valve (with three flaps or cusps) or not. When you speak with your cardiologist, please find out if the echo shows a bicuspid ("two flap" rather than three) valve. Bicuspid aortic valves are associated with the risk of aortic aneurysm and dissection. And especially if it is determined that your aortic valve is bicuspid (the most common heart birth defect, predominating in men to women by 4:1), please ask for the measurement of the aorta. Even if it is within the so called normal range, it may be dilated, depending on your body size. Also, if you have a bicuspid aortic valve, please do not allow anyone to perform an angiogram (catheterization), because threading a catheter through that fragile tissue is not recommended by aortic disease experts. There are safer diagnostic tests that can be done.
My husband's experience is at http://www.westga.edu/~wmaples/velebir_arlys.html
I sincerely hope that your valve is not bicuspid, but it is possible. I have lost count of all the healthy, athletic males in their 50's that I have met who have bicuspid valves. It is better to know, so that both the valve and the aorta can be properly monitored. Here is a reference on bicuspid aortic valves
http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
I want to encourage you that there is absolutely no reason for you to become your wife's favorite vegetable. My husband is proof of that! However, there is a need to get accurate information and fully understand your condtion.
Take care,
Arlyss

 

[Rich]

Arlyss,
I was also born with a bi-cuspid aortic valve but that is the first time I've heard about the danger of a normal catherization.
I had a normal catherization prior to my valve surgery and guess I was fortunate not to have a problem.
Since I have lost two good friends to aortic aneurysms I now ask my cardiologist to have the aorta checked every year during my yearly check-up.
That is also the first I heard that people like myself are more at risk for an aneurysm. Could you tell me more about it?

 

[Arlyss]

Hi Rich,
I'm glad to share what I have learned from reading the medical literature and also from my husband's experience. What the medical literature says is that a bicuspid valve is a risk factor for aortic anuerysm and/or dissection. A bicuspid valve is not just where two "normal" flaps have somehow failed to separate. The flaps or cusps themselves are abnormal, the tissue is not the same as a normal valve. The tissue of the aorta itself may also be abnormal, lacking in the elastic components that allow the aorta to withstand the force of the blood surging into it as the heart beats. It is not understood what causes the problem with the tissue, and why it is more severe in some people than others. Research is uderway into both underlying genetic problems as well as possible problems with protein metabolism that may be the cause of this problem. If the cause were identified perhaps some day there could be a test for this disease, as well as medical treatment for it.
So depending on the individual, the aorta may permanently begin to enlarge, and become subject to tearing or rupture. The bicuspid aortic valve may or may not have a problem at the same time. There is also a lot of variation in age. I know several in their 30's, some in the 40's, and quite a lot in their 50's who have developed problems with the valve, the aorta, or both. The youngest person that I am personally aware of that has had surgery for an aneurysm is a 17 year old boy - he still has his bicuspid aortic valve, which is still working fine. In some people, the bicuspid valve and the aorta may never cause a problem. The problem is, there is no way to know, except to be monitored - both the valve and the aorta.
I have found that the most expert aortic surgeons do not allow their patients to have angiograms (catheterizations); they are very conscious of the potential of damaging the aortic tissue, even tho' the damage might not be immediately obvious. They also are extremely careful with the surgical techniques used, in order to spare the aorta any damage. Interestingly, it is quite rare for those with bicuspid valves to have any blockage of the coronary arteries, unless they have been smokers or have diabetes, so a cath rarely finds anything. The coronary arteries' condition can be checked via nuclear medicine rather than a cath.
Much of this information just has not penetrated through out the medical community yet. You are very wise to have your aorta monitored. Please let me know if there are other things you would like to know.
Arlyss

 

[epstns]

Wow - I'm overwhelmed (again)! The response to what I thought was a *venting* question has been so sincere and so very helpful. I'm a tough guy (yeah, right) but I hope you'll excuse me for a moment while I compose myself to go on.

I am in awe of all of you, who have come through so much and have chosen to share and help. I expect I will become very dependent upon this group for both moral support and for the wealth of technical information and just plain good advice and experience within the group.

I have an appointment with my cardiologist on January 6 to discuss the echo results. Being new to all this, I am very afraid of what I will hear. I have asked my wife to go with me to help ask the questions I may forget to bring up. I fully expect the advice that surgery is a *when* and not just an *if*. If the outcome is better, that's fine, but I think I had better be ready to proceed whenever the cardio recommends. Being in Chicago, I expect there will be no shortage of highly qualified specialists to turn to, and my insurance is all in order.

I guess I'm now starting that waiting period to know what's next -- something I should probably learn to get used to for the next couple of months/years.

Again, thanks to you all. At the moment I am still too overwhelmed to remember many names to thank. I will be sure to stay in contact and keep the *family* posted on all the plans and outcomes.

God Bless You All

 

[Nancy]

Hi Steve-

Here's a couple of suggestions. From now on, bring your wife with you to all your medical appointments. When you are stressed out, it's hard to concentrate on what is being said, and you might lose some valuable info.

Make a list of questions for your doctor. Most doctors are very rushed. They have heavy caseloads, and when they talk, sometimes it's fast, brief and technical. Two sets of ears are better than one.

Use this time to do research on your condition, on this site and on others as well. Cleveland Clinic has lots of good information, and heartcenteronline is another good one. Others will have suggestions as well.

Hank, the founder of this site, has compiled some heart links for all of us. It's on the main page, so do look at those sites. Plus read the personal stories. Inspiring stories there.

Lots of people think that not knowing about heart things is the best, but trust me on this issue. Learning as much as you can will diminish your fears significantly. Just delve in. It'll be hard at first, the lingo has to be learned, and you will experience some anxiety, but just forge ahead with your studies.

Good luck. Keep on posting.

 

[Arlyss]

Hi Steve,
I just wanted to echo Nancy's thoughts here. My husband calls me the "project manager" , and I think that is a fair description really. Your wife can be a tremendous help in tracking test results, writing down questions ahead of time and noting the answers during appointments, etc. One thing I would encourage is that you/your wife get copies of all the reports - the echo, lab work etc. and keep it organized. This is a great help for your own information and also when you need to see other doctors, you already have everything together - so much less stressful!
Yes, it is very stressfu to go to that consult you are facing, but having written down questions ahead of time, and having the support and help of your wife will make such a difference.
Wishing you all the best,
Arlyss

 

[epstns]

Thanks again. Now the hard part -- how to begin developing my list of questions. I'm going to take a stab at it, then will be back on the board to run it by everyone.

Might be a day or three. . . but as the once notable Douglas MacArthur is reputed to have said, "I shall return."