Questions and concerns.. Please help!

[pgammo]

Hello everyone,

My name is Peter and I am 25. I live in San Diego, CA. I was just diagnosed with BAV yesterday, but my Cardiologist was very short with me and refused to go into further detail until I received blood work, CT scan, and some other hospital test. I have already done an echo, ekg, holter monitor, and stress test. In fact, I just performed my stress test yesterday, and since then, my heart has been beating fast and I can feel like consciously. Is this normal, or am I just feeling this way out of fear and anxiety? How did you all deal with stress and anxiety after finding out? The doctor ordered a CT scan, and on the referral form it states that it is for a r out anureysm. Why would he be testing for that? Does the echo give the doctor all the info he needs about my condition?

Also, one final question: is the replacement surgery safe? I'm scared out of my mind about it.

Thanks for all of your help!

 

[Greg a]

Peter a heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future ..... this site is proof that the surgery IS SAFE and full of survivors .....no Doctor should be short with you and I would seek a second opinion ....get as knowledge able as you can there are like minded and your age as well here so again I say ask away

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

 

[dick0236]

Also, one final question: is the replacement surgery safe? I'm scared out of my mind about it.

Thanks for all of your help!

Welcome Peter. You have reached the BEST forum available for folks facing this kind of surgery.....whether the surgery is imminent, or a few years down the road. You are, most likely, expeiencing a lot of anxiety and that is normal.....and your best defense is to educate yourself about your problem and the available solutions.

The surgery is as safe as ANY major surgery can be. Being young is in your favor and if you read some of the recent posting you will find that sevral of our newer members have bounced back surprisingly fast.

 

[dhudson]

Peter, a year ago they told me i need surgery ASAP, i went for second opinion, and glad I did, the next best thing I did was join this forum. You will find more information here than any place else I have looked. Learn as much as you, don't be afraid to ask questions. I am telling you this from experience. And I had alot of anxicousness and anxiety when first diagnosed. I am still waitng a year later. Not sure when I will have to do OHS, but it doesn't scare as much anymore. Education and this forum really helps. It's our health, we own it, up to us to taske care of it. Welcome to the boards, and don't worry, you got a long fullfilling life a head you>

 

[Glen Swan]

I wouldn't worry about the extra tests that much. Most doctors in my experience just want to get all the facts before trying to explain what they see and what it could mean. The reason for that is because too many patients take what the doctor says seriously (as they should). But, it doesn't mean what the doctor tells you is the truth. He can only go based on facts and experience. Sometimes those facts are incorrect and sometimes those experiences don't relate to every patient as everyone is different. Thus, if they speak too soon, they have a higher chance of saying something wrong that normally leads to some patients being seriously upset with the doctor and the hospital. For me, and most I know, we understand it's not an exact science at times. So, we try to approach the docs with an open mind and in return, they are normally more open before all the results are in (i.e.: this is what I think it could be, but lets wait for the final rounds of testing). You just got to be direct with the doctor off the bat or otherwise, find someone else who can be.

I think it's perfectly normal to feel anxiety and stressed out about the whole ordeal. The best thing for ya is to remember that the chances of something bad happening are very slim. Today's medical advances give everyone a great upper hand in terms of addressing a magnitude of problems found in our bodies. Just take the people who post in this community, or the guy above me for example, all having similar issues and all very much past that point in life. Why? Because it's not as bad as it seems and most everything is highly treatable. No, that does not mean you shouldn't worry or take this serious, it just means that you have a lot of good things riding on your side in terms of being better in the near feature.

When I found out about my sons condition and even conditions I have, I normally feel like you do. The best things for me to calm myself down, especially when my heart is beating insane, is taking walks out side and taking deep breathes. I also talk to people, much like ones found in this community who have shared similar experiences. It all helps and the return is a more calm and stable me.

Good luck to ya, everything will be fine.

 

[tprice54]

TAke a deep breath....ok, take another deep breath....now, maybe your cardio wants to wait for ALL test results ebfore dicussing the detials with you. The CT is for checking any aortic root dilation. You will want to know if your aorta is enlarged, as this can be common with valve issue. To answer your most important question, yes surgery is pretty safe (I think we are at a 2% mortality rate, and that includes all ages). Try one more visit with your cardio, but if you still feel uneasy, then please get a second opinion. It is very important to have a good relationship with your cardiologist.

 

[Mentu]

Peter, I'll add my voice to the others. Feeling anxious is every so normal and the thought of open heart surgery is scary at first. Fortunately, this type of surgery has become much safer than ever before and even more so for a younger person in otherwise good health. Talking about how your are feeling is one of the tools you can use to ease the anxiety you are feeling. Learning more about your condition is another thing you can do; reading of other people's experiences here in VR is a good place to start. Also, You might ask for a copy of your echocardiogram for your personal records. As a start, it will tell you some of the basic parameters of your condition and help you understand when surgery may be advisable. If the time for surgery is not now but in the future, your copies of annual echos will allow you to follow the state of your heart and provide you with information to discuss with your cardiologist as time passes.

I think one of the problems many of us have had is that often our cardiologists don't seem to appreciate the emotional storm they set off when they tell us only a little of what they found. Your doctor works for you. You pay him; he does not pay you and you have a right to respectfully demand information and to ask his opinion based on the information he has. Few things are more frustrating than being left dangling.

Take care, Peter.

Larry

 

[pgammo]

Thank you guys for your prompt responses. Is it normal for your heart to be beating out of control? Mine has been since my stress test, and more specifically, since I got the news that I was diagnosed.

I have always had teeth problems, such as root canals, crowns, etc. Will this be a problem for me in the future with a valve replacement?

 

[yotphix]

"I have always had teeth problems, such as root canals, crowns, etc. Will this be a problem for me in the future with a valve replacement?"

You can certainly do all of those things after having your valve replaced. You will need to be careful, as you should be now, about getting oral infections, and about treating them promptly if you do get them. Most of us take antibiotics before invasive dental work, though there are some who seem to think that it is unnecessary for relatively minor treatments. Your Cardiologist ought to have some recommendations about that, and your dentist will have some idea about it too. You'll not that on a typical dental intake assessment form there is usually a question about valve disease.

I remember very clearly the shocking news, when I was 30 or 31, that I had a valve which would almost certainly require open heart surgery at some point in the future. If I had known then what I know now, I would certainly not have been nearly as bothered by it as I was. At the time I was already suffering crazy palpitations, and having dizzy spells, which were part of what prompted me to see the doctor in the first place. It turned out that those afflictions were unrelated to the valve problems, but they did get considerably worse with the news of the valve, like you, probably simply from the stress.

Please don't worry too much about this diagnosis. It's not ideal, for sure. It's no death sentence though. I went another 7 years without surgery, and then chose, with the guidance of my cardiologist (whom I didn't like much at first, but then he grew on me. Now that he's improved my life so much, I wouldn't trade him for anyone.) and the surgeon he referred me to, to have the surgery while I was still in quite good shape. We chose to have it to prevent my heart from becoming too enlarged, from working too hard at overcoming the valve deficiency. Changing it early has allowed my heart to completely return to normal size. While they were in there, they fixed up the irregular beats too, with a nifty little hack that prevents them.

One thing you may be relieved to hear, is that my surgeon, at our first meeting asked me if I was worried about the surgery. I said, yeah, I'm pretty worried. He said 'don't be, you're so young and strong and healthy, this will be no problem for you at all'. I was 39 so someone in his 20's certainly should feel pretty good about his chances!

I'm sorry that I came across your postings just a day after I left San Diego for good, or I would have suggested that we could meet up and you could ask me anything you like, and so you could see what someone who's had the surgery looks like (normal really - I'm almost three years out from my surgery and I run 3-4 miles, 4-5 times per week, cycle, inline skate, ride motorcycles and work on a great big yacht).

You're off to an excellent start by taking the time and trouble to inform yourself. Ask questions, read and learn. What you'll undoubtedly discover is that, while it truly sucks to have discovered that there is something wrong with you that will not go away without serious intervention, a:It's way better than NOT discovering it, and b:It's not such a terrible thing to deal with.

Best of luck, and really, don't stress too hard. There are something like six million BAVs in the US alone. And there are nearly 20,000 Aortic Valve surgeries in a given year. We're not so rare. As medical problems go, this one is relatively well understood, and the interventions available are extremely safe and effective. My own surgeon said 'it's really just plumbing'.

 

[epstns]

Peter,

These folks have pretty much covered the situation. It is scary at first, but believe me, it settles down. I was diagnosed with aortic stenosis at around age 54, then waited over 9 years before surgery became necessary. During those years I lived a pretty normal life. I didn't have any real limitations until maybe the last 6 months or so prior to surgery. In fact, my life was so "normal" that the docs always marvelled that, given my test results, I had literally no symptoms until years later. The initial diagnosis is a shock, but if the diagnosis also includes the projection that surgery is some years to the future, you do get used to the facts and you will manage to settle down and live your life until the time comes. When you hear from your docs as to how soon they expect you'll need surgery, come on back and we can discuss how to maintain your sanity (if you have any left by now) over the long haul.

Also, if for any reason you are not comfortable talking with your cardio, by all means go find another one. These docs perform a critical function for patients like us, and if you are not comfortable working with yours, then you need to find one who is more to your liking. I fired my first cardio, and it was the best thing I could have done. The second (and now third, as the second one moved) have been just great to work with. They tell it like it is, and I can ask all the questions I wish. We discuss, debate, then agree on my treatment plan. We, as patients, need to be active in our own medical care. I saw too many people of my parents' generation simply take their doctors' words as "law" and the results were lousy. Take control. You're going to have some sort of heart condition for the rest of your life, so make sure that you have a care team that you really like and trust.