New here (and scared!)

[l385spike]

Well, to start off with a little history, I was diagnosed with aortic stenosis when I was 12. I was scared then as well, but living with the thought of my heart giving out at such a young and impressionable age made me feel very different from everyone else. I think it had a big effect on me emotionally. I lived pretty dangerously until my twenties. Then I kind of started pushing my luck in another direction. I started lifting weights, I took up boxing, I ran a lot. And never had a problem. I married (and divorced!) and have 2 beautiful boys now. I also started training Brazilian Jiu-Jitsu about four years ago. Everything in life was going great! Then, at the cardiologist office for my son (he is fine by the way), they asked me about family heart history. When I said aortic stenosis they almost had me on the operating table immediately! The doctor told me all about what this has been doing to me for the last 28 years or so and now I'm really scared! I have an appointment on the 19th of August, but now I am worried sick. I am afraid to exercise, I haven't trained in jiu-jitsu in weeks and I can't even BEGIN to think about the procedure that I guess I am facing. I coach Little League baseball, I can't take that much time off of work, who will care for my dog....etc? I feel all those old feelings from when I was 12 creeping back in. I guess I am kind of freaking out, but finding this site may have been the best thing that happened to me in a while!

 

[perrypiratesdad]

Spike... first off, welcome. Secondly, you are going through all the emotions that each one of us has gone through.

The first thing I would say, is don't lift weights anymore (at least not power lift... normal circuit lifting is okay for the most part, but let your cardiologist advise you on all of that).

I would just try and relax the best you can for now. You are going to have tons of questions to ask. What I would suggest is start witting them down now as they come up, and take that list with you to your doctors appointment.

Yes, you have stenosis, but that can be many years before anything has to be done, and there are different ways to fix that. I had stenosis too with my BAV. I lived a very active life for most of my childhood and into adulthood. At age 28 though, I started showing symptoms (shortness of breath, tiredness, etc) and that was the signal that it was nearing that time. You may be years or decades away from that time.

Anyhow, expect a number of tests (Echo, EKG, etc) but try not to be scared. And stop worrying about taking time off from work etc. Nobody said you needed surgery yet. I think the doctors were just trying to get you to realize that you need to take care of your heart and have regular checkup's. Some people never do, and that is what ends up getting them in trouble. By having regular checkup's with a cardiologist, you can track the progression of all of this.

 

[Snoviper]

Hello and welcome, you have found a great site here. You will get answers to lots of your questions as well as comfort and support.

 

[Tom F.]

Of course you are scared. This forum is just filled with people that faced the prospect of heart valve surgery, and we were all scared. What I would suggest is that you start looking now at valve choices, do some homework here, and elsewhere on the internet. Then start planning ahead. Find someone to care for your dog, to be with you the first few days you come home, all of that. But also be prepared for the possibility that you will not need surgery for some time. Maybe for a long time. How do you feel generally?

 

[Phyllis]

Welcome. I'm so glad you found us. This thread might help with some questions to ask when you go to the cardio: http://valvereplacement.com/forums/showthread.php?t=23834&highlight=questions+cardio

 

[Ross]

Welcome to our hunble home or insane asylum, depending on how you look at it.

Yeap everything your feeling, we have all felt. Perfectly normal to be scared. Doesn't matter if it's your first or any other time. As the others have offered, do your homework now. Read about your valve choices etc, then if it's your time, you'll walk into this a whole lot more informed then you are today.

 

[l385spike]

Wow! You guys are fantastic! I really mean it when I say this site is a blessing! What an incredible resource for folks who are facing some pretty serious challenges. It is so very reassuring to read about people who have faced this, and done it successfully and so courageously. Makes me feel kind of like a wimp! I am relatively young and in pretty good shape. Except that I LIVE on fatty and salty foods. My diet is terrible. That is first on my list to clean up. Thank you all so very much for the quick and helpful responses. I am reading every one of them several times, and I get a little less anxious after each one!

 

[Ross]

Courageous? Don't make me laugh. There isn't one amongst us that wasn't a quivering wuss going into this, not one. If someone says they weren't they are a liar.

 

[ALCapshaw2]

WHOA Spike !

Did you have ANY tests before the Cardiologist started in his epistle about Aortic Stenosis?

Test ONE should be a standard Echocardiogram to 'see what's going on' with your valves. Be sure to ask for and sign a "Request for Medical Records" i.e. your Test Results from whatever facility does your test(s).

There are some guidelines for reading Echocardiogram Reports in the Reference Forum or just post them here if you like. Several of our members have become fairly proficient at reading those reports.

As far as getting nervous about possible Open Heart Surgery, that's 'par for the course'. EVERYBODY does.

The Good News is that Valve Replacement Surgery has become a finely tuned art with extremely high success rates. Typically only 1% Morbidity and 1% Mortality for first timers under age 60. That is WAY better than the results of 'doing nothing' and 'letting nature take it's course'!

I know it's hard, but try to stay calm and limit your stress while waiting for your appointment with the Cardiologist. Feel free to ask any questions that come up after your tests / office visit.

'AL Capshaw'

 

[Mary]

Hi and welcome!
In my humble opinion, you might as well wait until your appointment to worry about this. If I understand it correctly, you've been given no reason to think the stenosis has worsened; it was just raised in conjunction with your son's appointment.
It's possible you have many years before you need be concerned. Until you find out definitively, I would live my life just as you've been living it.

 

[Bina]

Hello Spike and welcome to the group.
I also had aortic stenosis which was only confirmed in my thirties, before that my doc thought I just had a "harmless" heart murmur.
Be thankful that you are still able to be active and are under cardio care. Your doc will order the necessary tests as he watches your condition.
Try not to stress, things will fall into place.....I understand your concern for your dog, the only thing I was freaking out about were my animals and how would they manage. I boarded a few with friends, and for the house pets I made up a schedule with a list of phone numbers, and spare house keys for the care givers.
It all works out, believe me.

 

[Jkm7]

Hi Spike and Welcome. Happy you found us but sorry for the reason.

I agree with everything the others have said.
We all were a quivering mess when we faced our surgeries.
Five months ago, I had a second OHS. My first was four years prior and I returned to the same excellent surgeon.

For almost all of us, the wait turns out to be the worst of it.
I cruised through my second surgery easily and (knock wood) with no serious complications. I was permitted to drive three weeks post op for short, local errands/doctors appointments.

You aren't yet at the place to be worrying about surgery. Your focus now is to do the required tests....none of which I found troublesome, painful or any lasting effect. EKG is nothing; TEE if done by a very experienced Interventional Cardiologist is very easy (skill of Doctor is important) and I had no problem with either of my caths. (I have no memory from the first. The drugs they used are amnesiacs and though I know I had it, I don't remember it.)

After you get the test results, you'll move onto the interpretation and what your doctors recommend.

We have all been there either as patient or husband/wife/SO/ adult child etc Only someone who has walked the walk truly understands.

We will help you in every way possible.
You just joined a "Valvers Family" and we care about our own.

 

[A New Beginning]

Hey

Welcome to the site. I too am younger and I just had heart surgery on july 11. I had a mitro valve replaced. I went through and still sometimes go through all the emotions that you are having. as others have told me, you cannot change what is happening, you have to just plan for the recovery.

you sound like me with my dog. i made arrangements with not only people form work but family to take turns taking care of my dog.

the thing you have to think about is that once you go through the surgery to repair what is going on, if you have to, then that is something you nor your family will have to have hanging over your head any further.

Try and take a deep breath.......

Calm, Relaxed at peace.... this is what i say to myself when i get over excited and trust me, i say it a lot.

everyone here is awesome and there are so many experiences on this site, you will find something that someone else has gone through that is so close that it is crazy.

basically, i am saying you are normal and i am glad you joined this site because we have all been there or have family members that have been there.

welcome

Aja

 

[ponygirlmom]

Did the cardiologist actually tell you not to do your activities? It sounds like he did not give you any guidance one way or the other.

If you actually do need surgery, you need to go into it in as good a shape as possible. I would call that cardiologist immediately for a complete explanation of what he thinks you can do and WHY. Make sure the answers relate directly to you, personally.

(Good reason to skip jujitsu: "You have a giant aorta that will blow at any minute!" Bad reason to skip jujitsu: "According to medical literature, people with juvenile stenosis who are one hundred pounds overweight, smoke, drink and dip pork rinds into pork-fat fondue for dinner tend to die stepping over the threshold of the gym. And while you aren't an overweight, smoking, drinking pork-fat-fondue-eater, you DO have juvenile stenosis, so I suggest covering your eyes whenever you pass a gym, just to be safe.")

 

[ponygirlmom]

I coach Little League baseball, I can't take that much time off of work, who will care for my dog....etc?

Forgot to add some encouraging things:

1. It's very likely that, by the time the doctors are done with the ten gazillion tests they need to do before surgery, the summer will be over, so you won't be leaving your kids in a lurch. That's what happened to me -- I was supposed to have surgery "very soon," which turned out to be six months later.

2. They HAVE to let you take that much time off of work! Ha ha for THEM!

3. Pet sitter. She'll take in your mail and papers, too.

 

[Duff Man]

Spike, welcome.

I agree with what Al Capshaw said. You need quite a few tests (and hopefully opinions) before any decisions are made about surgery. This is a huge guess, but I'm thinking your doctor probably gave you an EKG in the office, listened to your heart, heard a murmur and the EKG probably showed hypertrophy. An EKG and auscultation of you heart sounds are very basic diagnostic methods to determine a general problem with the heart function.

You need at LEAST an echo and a CT scan to figure out if surgery is necessary. It might also be appropriate to lay off the exercise for a bit until you can ask your doctor or cardiologist if it's ok.

 

[hall]

Welcome Spike! As others have said this forum is great. Has a wealth of information. If you don't see something you are wanting to know....ask. Someone can help you. I would think there was something wrong with you if you weren't scared. Hope to hear how your appointment goes. Wishing you luck!

 

[Leah]

Hello, Spike. Welcome. I too have found this site a wonderful resource for identifying issues and recognizing questions I need to ask.

I went back and re-read your original post. Unless I and others are misunderstanding, it appears that you have not yet been tested (or at least not yet received test results) to let you know the severity of your aortic stenosis. You will hear various opinions about what tests are essential (for example, very credible expert sources differed about whether I needed a CT scan), but, at minimum, no one gets evaluated without an echocardiogram. The echo evaluates, among other things, the degree to which your valve opening has narrowed, whether certain types of heart damage are present (particularly enlargement of the left ventricle if the heart has over-worked), and how well the heart is pumping blood.

From what you've said, all you know right now is that your son's cardiologist was concerned because of your diagnosis - maybe for the simple reason that you haven't been followed and this is a progressive condition. You don't know (or haven't said) whether your stenosis is mild, moderate, severe or critical. Many people are watched for years before the narrowing becomes severe enough for surgery, especially if they have no other problems such as aortic regurgitation or aortic aneurysms.

I'm a good example of the "waiting game." I was diagnosed at 53, after being told for decades that my murmur was a "normal variant, not a medical condition." I'm grateful to my internist who said, "it sounds harsh, get an echocardiogram." Nevertheless, even after I was diagnosed I was "mild to moderate." I've been followed annually and it was another few years before I was diagnosed as "severe." Now, at 57, I've been "severe" (degree of narrowing) for a couple of years and still have no symptoms and no heart damage, but based on advice from a number of surgeons will have my valve replaced next month to make sure it's done before there's any damage. In the meantime, I power-walked four miles during my lunch hour today and intend to exercise until the day before the surgery.

So you can see that this is a condition that progresses at different rates for different people. The upshot of your cardio consult and testing may be that you are followed for the next 10 or 15 years, or more, or that you need surgery now, or that you're in a "gray area" - but you really don't know yet. The fact that you're healthy and asymptomatic is a good starting point.

So you've come to the right place and you've recognized that this is a good time to start getting knowledgeable - but it's way, way too early to get tied up in knots.

Good luck, and keep asking questions.

Leah

 

[Superbob]

You've gotten some great answers here. Again, welcome to our funny farm!

Just to add a personal note: My congenital problem was first noticed by an internist when I was in my 20s (a long, LONG time ago ). My replacement surgery did not come until I was 63. In between, I was very active -- played industrial league softball, even ran some marathons.

So there can be a long time between diagnosis and time for surgery.

I second what others said about the need for tests to determine your stage.

Certainly wouldn't worry too much til data show the need for surgery. THEN it's okay to freak out. It is normal to be anxious when surgery is pending, but every reason to be confident too after you find out how advanced medical technology is and how the odds are very much in your favor.

 

[WayneGM]

Welcome to VR, Spike. Sorry for the circumstances but glad you've found us. As you can see from the great responses already there is a wealth of information and support here. Best wishes and good luck.

BTW, being scared is normal but I can honestly say that the surgery wasn't nearly as bad as my fears imagined.