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JoeP

Member
Joined
Jan 21, 2013
Messages
9
Location
Ont. Canada
Hi guys. So 1 week i'm planning my future for college and the next i'm being told I have a problem with my heart valve.
I had an echo and he phoned and told me that my valve is leaking. I'm scheduled for an appointment with a cardiologist on
Wednesday.

Ever since I hung up the phone with my doctor I have had all kinds of aches, pains and weird feelings that i've never felt before.

I quess I just need some support here... If my valve isn't leaking that bad is it possible to go my whole life or at least the majority of it without needing surgery? Say I get surgery; will I be able to live as long as any other person afterwards?

My doctor didn't tell me much on the phone and I was too shocked to know what to ask... I asked him if I had it since birth how serious could it be and he said "It could get bigger." and that "It's not an easy fix."

Help me! I'm freaking out!
 
Hi JoeP

Why did you go to a cardiologist? did have any symptoms? I've been in a similar situation and it is scary at first. I felt almost every heart beat, had strange sensations in my chest and thought I was out of breath. After a week I was back in the gym doing sports like before the bad news.
Here is some general information without knowing your problem in detail: Assuming you don't have any symptoms two things are important: The actual amount of leakage and how your ventricle deals with this. If the leakage is low and your ventricular dimensions are normal you might live a long life without any problems. Likely you'll have controls depending on your individual risk.
Fixing a valve is never an "easy fix". However in this forum you can find reports from hundreds of people who had their valve fixed and are doing just fine.

Best,
Tirone
 
Joe takes some deep breaths and yes people with leaking valves can live a full long life. Women have babies’ very day and the death rate for having a baby is not that much different from having heart valve surgery. Keep on making your plans for college and most people that have heart surgery can return to work and start driving after six week. The waiting is the hardest part. May God Blessed you.
 
I felt the same way as you. I was freaking out when my primary care doctor told me he wanted me to see a cardiologist RIGHT NOW. It's not that bad as you think. Everything will be okay. Go see your cardiologist next week and let us know how your appointment went.
 
I quess I just need some support here... If my valve isn't leaking that bad is it possible to go my whole life or at least the majority of it without needing surgery? Say I get surgery; will I be able to live as long as any other person afterwards?

Help me! I'm freaking out!

Hi JoeP. It is very possible to go a long time before needing surgery. The key is to have routine followups... and surgery when "it is time". It is not a life ending procedure and if you are like most of us, the surgery will have little effect on your life afterwads. Most of us continue to live a very normal life. Read all you can.....this site is a very good source from people who have "been there and done that".
 
Aww try and relax if you can! The good news is your doctors are aware of a problem and they will do the right thing for you. Try not to stress about it much it could be something minor/small. If you do need surgery in the future it will be fine and you will be able to resume your normal lifestyle! Good luck at your appt and we are all here for you!
 
Tirone,
I went to my family doctor because I had a chest pain. He said it was most likely from lifting too much weight when working out and it would go away in 3-4 days (which it did). I started working out last summer and have never felt anything until this month when I increased the weights/intensity. Then he started talking about how it would be a problem if I felt out of breath doing it and I mentioned one time I ran up my stairs and felt out of breath so he made me an apt for an echo. Infact the first thing he did was listen to my heart and lungs when I went in and he said everything sounds good.

Now i've read about how the symptoms tend to be general fatigue and out of breath on exertion so i've tested running up my stairs again and haven't felt out of breath.

Here's something I've wondered though; how can some people be at the 'severe' range and not have any symptoms and others be in the early stages WITH symptoms?
 
JoeP,
Why some patients have symptoms and others don't is not quite understood yet. Up to a certain point the heart can adapt very well to valvular decease. However, at one point the heart will suffer irreversible damage. Annual controls can help monitor the hearts condition and eventually plan an operation before there is severe damage. I'm therefore glad to already know about my own valvular disease, rather then finding it out in 10 years at the point of no return... In the case of mild regurgitation many people will never have to be operated.
Your doctor can help you find out whether your chest pain and shortness of breathing were really caused by the valve. A widely used classification for symptoms is the so called NYHA classification (http://en.wikipedia.org/wiki/New_York_Heart_Association_Functional_Classification). Don't forget: It's normal to be out of breath when running a marathon or doing heavy weight lifting.
 
No reason to get too worked up at this point. Everyone case is going to be a little different. You are doing the best thing in getting checked out by your cardiologist so you can make informed decisions.
My BAV was first diagnosed when I was five years old and I had my first catherization at age 15. I was totally asymptomatic at that time. While they told me that some folks never needed surgery, it was likely I would need valve surgery in later life, probably in my mid-40's.
I was given no restrictions, and was very active physically my whole life. I did have annual check-ups with my cardiologist, but that usually only involved having an EKG.
I developed symptoms fairly rapidly at age 47 and had my surgery in December 2000.
Since my surgery I've returned to an active lifestyle which includes triathlons. Did a ten mile run this morning training for my third half marathon coming up in March.
Again, the best course is to listen to your doctor and do your research.
Good luck,
Mark
 
Joe - I know it is a shock to hear that you probably need heart surgery. I found out I had a heart condition when a doctor I saw for another reason asked me "How long have you had that heart murmur?" He then advised me to have it evaluated "sooner rather than later." I was soon diagnosed with aortic stenosis caused by a congenital bicuspid aortic valve. By that time in my life (about 52 yrs old) I had already finished college, spent 7 years in the military and had a family and career. Nothing got in the way. After diagnosis, I didn't need surgery until 9 years later. These things don't always happen quickly, and I had many years to worry about it. I got over that, too, and just went on with life until it was time. You are finding out about your condition earlier, you will have it repaired sooner, and will just get on with life like everyone else. We all do. We just have a few more scars than most folks.

I am now almost 2 years post surgery and am doing more at the gym than I was able to do for the couple of years just prior to surgery. I'm also still working 50-60 hours a week and feel great. Life has a way of getting back to normal without much help from the patient. Don't worry, the odds are in your favor.
 
I just feel like i'm missing something about this. I had myself calmed down a few days ago when I read the survival rates after surgery were basically that of the average person and who knows when i'll actually need it. But there's more isn't there? Little things that we're at slightly higher risks for before and after surgery?

I just hope I don't need the surgery for a few decades- i'm so physically, mentally and emotionally drained right now from the shock and unknown.
 
Hi
Ever since I hung up the phone with my doctor I have had all kinds of aches, pains and weird feelings that i've never felt before.

It could just be anxiety, that would be expectable under the circumstances. But mention it to your doctor next time.

Help me! I'm freaking out!

well firstly I'll agree with the viewpoints expressed here. I also have seen that at your age with no history its quite shocking. I personally was diagnosed at about 5 and had first surgery at 10 then did well till about 28, had another surgery, did well till 47 and now have a mechanical.

I feel that you have the opportunity at your feet to learn more about being alive and living than anyone who was born and lived without this. If you adjust your view on things you will come to see and appreciate life as only those with the awareness that we are all just passing through have.

Normally this sort of wisdom is not seen until people are in their autumn years. I have found that as a result of the surgeries, the recognition of my mortality and time spent in recovery that I developed such an outlook in my late teens.

You'll be fine.

always willing to listen at this end.
 
Tirone,
I went to my family doctor because I had a chest pain. He said it was most likely from lifting too much weight when working out and it would go away in 3-4 days (which it did). I started working out last summer and have never felt anything until this month when I increased the weights/intensity. Then he started talking about how it would be a problem if I felt out of breath doing it and I mentioned one time I ran up my stairs and felt out of breath so he made me an apt for an echo. Infact the first thing he did was listen to my heart and lungs when I went in and he said everything sounds good.

Now i've read about how the symptoms tend to be general fatigue and out of breath on exertion so i've tested running up my stairs again and haven't felt out of breath.

Here's something I've wondered though; how can some people be at the 'severe' range and not have any symptoms and others be in the early stages WITH symptoms?

Hi JoeP,

we are all different, with different fitness levels, different ages and different pathophysiology, hence why we can all have slightly different symptoms. A young, otherwise helthy person has an amazing capacity to "compensate" for conditions that would knock an elderly person flat on their back. Also, our bodies continue to "adapt" to the leaky valve, but this can only take place for so long until symptoms become worrse or manifest as other issues, fatigue, shortness of breah etc.

So, let me explain a little further. If you are born with a bicuspid aortic valve, many of us will have no symptoms at all because our hearts and bodies are small, we have really good lungs and blood vessels, and the symptoms just don't occur unless itis very severe (usually). As we age, our heart changes shape, our blood prerssure increases, our bodies become bigger, we lift bigger weights and walk and run longer distances. If our heart valve is leaking, our heart may change shape to "compensate", ie the left ventrile becomes bigger to pump more blood, (left ventricular hypertrophy), but eventually these adaptations get to a limit beyond which you then start to become breathlessunderexertion initially, and if it worsens you become breathless at rest, cyanotic (blue) etc...The good news is that often this progression happens gradually, and if the valve condition is known it nca be monitored over tme. My valve was monitored over 30 years, and my left ventrile just started to get bigger in the last few years and then I started to become breathless when walking up very steep hils, and thats when they did the valve replacement. More good news is that my heart has now returned to its normal size, the symptoms of breathlessness are gone, and my heart ejection fraction and blood pressure are normnal.

It is so good you went to the doctor for the chest pains. Its good that you still have exercise tolerance, but if you were 30 or 40 years older that may not be the case. It sounds like you might be quite fit, and that will leave you in a good position.

Think about this. Had you not gone to the doctor, had you not been lifting weights, you may have never known about the valve. Now that you know you can have it monitored, (and in fact they may need to do nothing, or it may be many years beore they do something), and you can be sure to take antibiotics before you go to the dentist to ensure that any "bugs" that might get into your blood don't lodge on your diodgy valve and cause endocarditis (an infection of the heart, which can be very serious and can even destroy your valve). Its interesting, but because the blood no longer flows nicely through your valve (because it is leaking), there are little "eddy currents" which allow the bacteria to build up and start an infection on or near your valve, which can spread. If you didn't know what you know now (like quite a few people who have this condition and have no idea that they have it), you could have got an infection of it may have been much worse before you discovered it. The problem is if you leave it too long before having a valve replaced, the ventricle can enlarge too much, and where the aorta joins your heart can start to enlarge (the aortic root), and this makes the surgery more tricky, (the aortic root may have to be replaced also), its more extensive and some side effects (such as atrial fibrillation, and irregular and sometimes rapid heart beat) etc can be more likely.

Anyway, be quided by the experts,(yoru doctor and cardiologist), stay fit, eat wel, take antibiotics as prescribed and as directed, (especially before dental procedures) and stay active. You may be advised by your doctor to avoid very heavy squats or "explosive" activities (such as sprint cycling etc), but otherwise you shoudl remain active, and be alert to symptoms such as chest pain, breathlessness, puffy ankles (a sign of heart failure), wheezes (which can in fact be what used to be called "cardiac asthma" or whats now called pulmonary oedema or fluid ion the lungs, another sign of heart failure), and keep up eregular medical checkups.

Let us know how you get on, and take care,

kind regards,

ramjet
 
Thanks for the responses guys.

You're right, I think the best thing for me right now is just being aware that I have it.

I just want to know that this isn't going to stop me from growing old and having a family- that's what really worries me. Before I even knew I had this I would occasionally lie awake at night wondering what happens after life and I would scare myself just thinking about it.

pellicle,

I strongly believe this news is going to make me a new person and have a different outlook on life now. My stick-in-the-mud attitude and not being the most social days are behind me. Just knowing that someday i'm (probably) going to need OHS just makes little fears now seem so stupid.
 
Hi JoeP,

I'm thinking back to when I was in your shoes in 81', I was also 18 years old and doing a hockey team physical when that doctor said I had a murmur and referred me to a cardiologist for a echo and a stress test that confirmed I had a bicusp aortic valve. They told me at that time it could be possible that it would never need replacing, or maybe one day it would. At that point I embraced the not replacing theory and ran with it. I continued to play hockey and other activities like any other young man would. I was able to function another 30 years before having to fixing the valve. I started having echoes every two years from age 30, that's what was recommended to me. So the point is here for you, don't stop living and doing the things you love, unless you are advised too by your doctors, and you never know if you will ever need the surgery, but if you do, it's not a death sentence. It's a new beginning, with a repair and fully functional heart valve. I along with others here plan on living a full life after surgery. So be good to yourself and do the things you have dreamt about doing. You will be just fine.

Doug
 
Hi Doug.
Was your valve leaking at 18? Is that what makes the sound of a murmur?
I'm really hoping I can go as long as you did without needing surgery... Being told I need surgery very soon is going to turn me into a basket case.
 
JoeP,

Yes, the valve had a small leak at the time of discovery, that is the murmur, made a little noise that the GP picked up. The valve was bicusp, and didn't have a perfect seal. But after all the tests, it wasn't enough for them to be concern or enough to slow me down from living normal. I played hockey 5 days a week competitively for the next 7 years after that, then continued to play men's rec hockey till 3 years ago. I guess at age 46 the valve started to get more stenosis that started my symptoms. Today the bad valve is out and the new one is functioning just fine. Like you, I just want to continue with enjoying the things that life has to offer, like Family. I'm sure you will get more clarity soon and find that you too will continue a normal life. Good luck with your up and coming appointments, all will be OK. Keep us posted.

Doug
 
Thanks for the responses guys.

I just want to know that this isn't going to stop me from growing old and having a family- that's what really worries me. Before I even knew I had this I would occasionally lie awake at night wondering what happens after life and I would scare myself just thinking about it.

You'll be all right. As others have said - the biggest hurdle is getting used to the idea. I grew up with a leaking/narrowing valve (in short - it didn't open all the way, and it didn't close all the way). I knew about it my entire life. I had my first valve replacement two days before my 18th birthday. The only plus was I never had to deal with the initial shock that so many face. I always knew it was coming.

You really won't know much until you meet with your cardiologist. At that time, they'll let you know if surgery is close, or if it's just something they want to follow at this time with annual check ups.

Fast forward to today. I'm 40, I've got five great kids, finished college, have a career, ran a 25k (some events presented out of sequence). Feeling pretty good, other than being busy all the time. I did have a second surgery when I was 36 due to an aortic aneurysm. That was more akin to what you're feeling today. Did not know about it until one of my check-ups revealed it.
 

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