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R

rdouglas302

I hope I'm posting in the correct area...
I was diagnosed a year ago with WPW (corrected with RFA) and a bicuspid, leaky (moderate) aortic valve. After 30 years of having no idea anything was wrong, this was a not so pleasant surprise. My point in writing this is really to seek advice. I've gone from being happy and healthy to feeling like any moment I'm going to either fall over dead or find myself "on the table". I can't seem to stop worrying about what's going on and I'm certainly not getting told "everything's gonna be fine". I'm positive the worrying is certainly not helping the situation. Sorry to whine...I just can't seem to go on about my business, and there hasn't even been any talk of definite surgery in my future. Can anyone offer any advice on chilling out a little?? Thanks so much...

Ryan
 
well, I could say worrying won't help but that won't stop you from doing it. What I can tell you is everybody on this board has either had heart surgery or is going to have it at some time and look how many members are here. This site has been in existence since about 1999 and many, many have come in to get information, then gone on to surgery. Lots stayed here in membership, many moved on.

What you need to do now to take your mind off a little of the worry, is to read whatever you can find in here (and other places, as well) to know what is ahead. Ask us questions. We can and will tell you so much that will ease you on down some.

Remember, you are not alone in this. Nearly every member came here because of fear. Just join right in with yours.

Blessins..............
 
Best advice I can give you is to get your medical records and test results and read them for yourself. You can decide from there if there is something worth worrying about written. Lets take it a step at a time.
 
I remember that feeling--"like any moment I'm going to either fall over dead or find myself "on the table". I remember feeling resentful that my doctors view seemed that I would have the surgery and keep going, treating this major event like jumping over a puddle on the sidewalk, but I sort of did that!

It may help to talk to your cardiologist about whether you should have any fear at all about sudden events from your valve, and about what symptoms to look out for. Reading experiences on this forum will probably help too.

It may help read this document:
ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease
http://content.onlinejacc.org/cgi/co...ull/48/3/e1?ct

It will give you an idea of what symptoms or test results will mean it's time for surgery. Since you have moderate stenosis or regurgitation (depending on which direction it's leaking), the thing it won't tell you is how fast you will progress from moderate to severe.

I wish I could help with the chilling out. If you were feeling healthy before finding out about your valve problem, you are still healthy, with a valve defect that could take away your health, but can be fixed before it does.

Welcome to the forum. Keep posting with any questions or concerns. There's a lot of experience here.
 
rdouglas302 said:
...I was diagnosed a year ago with WPW (corrected with RFA) and a bicuspid, leaky (moderate) aortic valve. After 30 years of having no idea anything was wrong, this was a not so pleasant surprise. My point in writing this is really to seek advice. I've gone from being happy and healthy to feeling like any moment I'm going to either fall over dead or find myself "on the table". I can't seem to stop worrying about what's going on and I'm certainly not getting told "everything's gonna be fine". I'm positive the worrying is certainly not helping the situation. Sorry to whine...I just can't seem to go on about my business, and there hasn't even been any talk of definite surgery in my future. Can anyone offer any advice on chilling out a little??...
Click to expand...
Hi Ryan -

Welcome to the site; glad you found it. I'm not sure what WPW stands for, nor RFA. The profile section of the site is not currently working so I couldn't read anymore about your situation.

I have seen and have read that sometimes, emotionally, the whole shock of a major health situation such as this can be worse for breadwinners. Do you think that could be part of your stress?

Regarding advice for chilling out a little, I'll have to tell you that after I had my faulty and deteriorating bicuspid valve replaced, physically, I was amazingly better! Yeah, the surgery is rough, and developing at least one post-OHS complication seems to be somewhat common, but that new valve has been amazing for me.

The fact that nobody has mentioned definite surgery to you might be good. Or, in my case, my (former) cardio was either ignorant or a bozo because he actually told me that I was fine when I was actually very ill; but I was finally feeling so terribly miserable that I decided to consult with a highly recommended surgeon who said I did need surgery. Just to be sure, I consulted with two more excellent and highly recommended surgeons who also said I needed surgery--soon.

Many here have found that some cardios may tend to treat various symptoms while heart damage can occur from a faulty valve; but by contrast, an excellent and highly recommended surgeon may tend to want to make structural repair/replacement before irreparable heart damage occurs.

I hope this was helpful. Take care and post again :) .
 
Susan, WPW stands for Wolff Parkinson White Syndrome which is an accessory pathway which can cause very rapid heartrates.

Ryan, I think most of us have felt how you are feeling at some point. Educate yourself as best you can and find a good Dr. whom you trust. If your WPW is causing you a lot of trouble now, they can correct that without OHS via a cardiac cath.

Kim
 
rdouglas302 said:
I was diagnosed a year ago with WPW (corrected with RFA) and a bicuspid, leaky (moderate) aortic valve.... I've gone from being happy and healthy to feeling like any moment I'm going to either fall over dead or find myself "on the table".
Click to expand...

Do you mean that in the past year you have begun to feel physically much worse, or do you mean that you are afraid to do anything that might even remotely stimulate your heart?
 
"Do you mean that in the past year you have begun to feel physically much worse, or do you mean that you are afraid to do anything that might even remotely stimulate your heart?"

That's part of the problem I think...I can still do pretty much anything I want to physically, i.e. running, cycling. I also feel great when I'm not thinking about it. Then when my heart rate gets up I think "oh man, what's going to happen??" I'm becoming a basket case I think...

The comment that Susan BAV made makes a lot of sense too...b/c I've had a little trouble w/ insurance.

It's great to hear from those who have been there!
 
rdouglas302 said:
I can still do pretty much anything I want to physically, i.e. running, cycling. I also feel great when I'm not thinking about it. Then when my heart rate gets up I think "oh man, what's going to happen??" I'm becoming a basket case I think...
Click to expand...

It sounds like your cardiologist has not given you specific information about the heart-rate you, personally, can sustain, and it sounds like he/she also has not given you a clear idea of which kinds of symptoms are dangerous and which are benign.

Have you taken a stress test? If you are currently running and cycling, I'll bet you ace your stress test, and that will make you feel a whole lot safer about exercising.

See if you can get that info out of your doc. If your doc doesn't have exercise and sports on his radar (maybe his patients are all 90-year-old couch potatoes, or his idea of great exercise is walking around the block) you might take your medical records to a cardio who works with athletes or younger, more active people. (Btw, it's not the age of the cardiologist that determines his practice!)
 
According to my cardio, the only restriction I have is "no heavy wgt training".
I think the meds I'm on also don't make me feel very well...metoprolol and enalapril. Funny thing is that I never had a problem with high BP until I found all of this out last year! I'm going to ask about meds at my appt. next week...I'm having a stress test too.
 
Hey there!

The fear is normal, you're human after all. The cure for the fear is information, have them tell you exactly what is going on. Get test results, numbers, etc. Folks here can help you sort out their meaning. If you don't get clear info or simply get told "you'll be fine" then find another doctor for a second opinion. In any event you may just want to get a second opinion. Once you know what you're up against you can face the known better than fearing the unknown.

Many folks here have walked these paths, welcome. :cool:

Peace,
Ruth
 
Hi Rdouglas302,

I am just down I75 near Macon. I suggest you make sure you have a cardio.that you trust and get all your questions answered.I decided to get aggressive about fixing my problem when I learned I needed mitral valve repair/replacement.I surrounded myself with the best medical team I could find and told them to do what was necessary to fix my problem ASAP. You are fortunate to be near some of the best experts in the country at St Josephs and Emory. Ask all the questions you have here on VR. There are many veterans that have gone through what you are experiencing and are ready to help.
 
rdouglas302 said:
According to my cardio, the only restriction I have is "no heavy wgt training".
I think the meds I'm on also don't make me feel very well...metoprolol and enalapril. Funny thing is that I never had a problem with high BP until I found all of this out last year! I'm going to ask about meds at my appt. next week...I'm having a stress test too.
Click to expand...

That's the restriction I have, too.

Your instinct about your meds is probably right. How do they make you feel? You can find out exactly what those medicines are supposed to do for you, and if you need to adjust your dosage. Perhaps there are different meds that do the same thing but won't give you side effects.
 
Yes, reading other experiences has helped tremendously already.
It just seems I have a higher degree of anxiety on the meds...but can those cause that? Easing the work on my heart is exactly what I was told...but I just can't seem to get my Systolic down...the diastolic is fine. I have an appt. this Thursday and I'm definitely going to bring up meds.
 
I've been away from the board for a bit, but I just read this thread for the first time. I can't really help with the specific medical issues, as my condition is different (I have aortic stenosis -- my aortic valve is narrowing over time). I can, however, speak generally to the issue of how to get on with one's life after having the bombshell of diagnosis dropped on us.

A bit of background -- I was first diagnosed in 2002, and have been dealing with the certainty that I will have valve replacement surgery some time in the reasonably near future. The projections of the timing have gone from "5 to 10 years" now to "somewhere in the next 2 to 5 years" so I fully expect that at one of my cardio visits over the next couple of years I will be told to start interviewing surgeons.

That said, I, too, was absolutely crushed when I initially found that I have a heart condition that will ultimately require some pretty involved surgery for correction. I quite nearly crashed, mentally, for the first few days. Then, I shifted into a mindset of "head in the sand" and totally ignored the situation as best I could. It wasn't easy -- many sleepless nights worrying about what might become of me. I had a follow-up appointment with my cardio a few months later and mentioned my crushing concerns to him. His response was something on the order of ". . . go back to living your life. Let me take care of the medical issues. Trust me, you are not going to drop dead from this condition (may or may not be true for all patients - just my own story). When this gets bad enough for surgery, you will KNOW well before the danger point." He then went on to describe the potential symptoms I should watch for, when to call him, etc. This gave me a lot more self-confidence to go back to life as close to normal as I could.

I later learned that there are, in fact, some conditions under which my condition "could" lead to sudden death, but my cardio is watching my condition via echo's every six months to ensure that we're not nearing any of the danger points.

I guess my point in this rambling post is that once we get over the initial shock of diagnosis, if we are in the "watching and waiting" phase of valve disease, all we can do is follow the advice of a trusted cardio (you DO have one you trust, don't you?) and try to live life to its fullest. A lot of it is mind-over-matter. You can do a lot to control what you think about. At this point (60 yrs old, moderate to severe aortic stenosis) I am still allowed to jog daily (3 to 4 miles/day, just not as fast as I once was) and to lift MODERATE weights (not over 40 lbs). The cardio exercise is good for heart muscle maintenance, but keeping the weights smaller keeps one from raising blood pressure too high. I still work 50 to 60 hours a week, and life is good.

BTW, I also should welcome you to The Waiting Room, the virtual room in which many of us await our own turns at valve surgery. Visit often, ask all the questions you wish. The folks here are a wonderful source of first-hand information.
 
Ryan,
How old are you? I knew about my BAV for 4 years before I had to have surgery. I'm now 34 years old. Oh, and before I forget, I used to live in LaGrange (5 years). Great area down there. Anywho, my only restriction was heavy weight lifting as well. I was just able to adapt...though the weight lifting was the hardest. I used to love to lift! Now, I just lift light weights and am working up to moderate. I'm 12 weeks post surgery (had the Ross procedure). I'm not sure I have any advice for worrying because I don't typically worry about stuff. I just went about my business as normal and did what the docs said. I agree with Ross...check out your medical records yourself. Are you getting GOOD guidance from your cardio? What is he/she saying about surgery? If in question, I'd have a few good surgeons take a look at your records to see what they thought. I had Dr. Ryan in Dallas, TX and Dr. Stelzer in NY both look at mine and they gladly did so (and for free). Dr. Ryan ended up doing my surgery. At this stage, knowledge is key! Make sure you are doing what you are supposed to be doing (activity-wise) and just relax and live it up. You'll be fine!

Take care and good luck! You can send me a private message anytime you want! I'll be happy to email or chat about any questions you may have.
 
rdouglas302 said:
According to my cardio, the only restriction I have is "no heavy wgt training".
I think the meds I'm on also don't make me feel very well...metoprolol and enalapril. Funny thing is that I never had a problem with high BP until I found all of this out last year! I'm going to ask about meds at my appt. next week...I'm having a stress test too.
Click to expand...

I was on the same combination of blood pressure meds...they worked really well for me. Nowadays I only take the Metoprolol and my BP is perfect and steadier than it has ever been.

Anxiety is totally normal in your situation...part of the deal with us Bicuspid's is that we have what is called "Labile Hypertension", our BP changes quickly with stress and activity. White coat syndrome also throws off BP readings so many of us have our own home BP machines. Once you start to take your own BP and see that it does respond to the meds you get more confident.
 
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