Possible Surgery ??

[M&M]

Hi, I have an appt. next week with a surgeon who specializes in 'valves'. I was told I have a moderate to severe leaky mitral valve. My left ventricle is enlarged - can't remember how much - but my cardiologist didn't like it. I have a 54% EF rate and I thought that was good - but he said not with a leaky valve. It in all probability was starting to leak when I had my heart attack 11 years ago - as it was in the area of my heart that I had my heart attack. But I do exercise alot and I'm wondering if you can tell when an enlarged heart is from exercise or leaky valve??

Now the problem - I'm not asymptomatic. I feeel GREAT - Matter of fact I'm ready to run a marathon. I'm not sure he'll suggest surgery - does anyone here think its a possibility with the criteria I've listed. I want to be prepared to answer him if he does suggest it. But I can't see having surgery when I feel GREAT and I'm not sure I care what the numbers say.. I feel GREAT.. and all the things I've read - said thats the best time to do it.. Makes no sense - and then I would think they would do a catherization if surgery was suggested and although I have some blockages in my arteries - its not more than 60% and I can't see replacing any of those - BTW - I don't have any stents and I've never had open heart surgery - I had a blood clot when I had my heart attack and they broke it open with TPA and I was fine. So, I'm in kind of a dilemna - I have a defibrilator for ventricular tachycardia and before they inplanted me I found a great website that was very informative and helped me to make learn more. So that I could make a wise decision - I hate making decisions.. That is like the worse thing for me to do. I would do anything to avoid it. Then if all that's not bad enough - they have all kinds of valves - god I could never make a decision on that.. Perhaps I won't need to and the surgeon and I will sit and eat my delicious baked muffins and talk about the weather - now that would be nice..

Thanks
Runner

 

[Ross]

Good Morning Runner and welcome to the best place for these things.

Yes you meet the criteria for surgery and Yes the valve is causing the heart enlargement. That being said, you may feel great now but that can change very quickly. What all have they done as far as tests to this point? I would caution you on the exercising until more info is decided upon, but you seem to be fairly symptom free so far.

Lets take this one step at a time. That's the only way to take it anyway.

Again, welcome to our humble home. Pull up a chair, get some coffee, make some popcorn and read about. We'll try to answer everything you ever wanted to know that you don't already know.

 

[epstns]

Another one who runs. . .

Another one who runs. . .

Hi Runner!

Welcome to VR, and I'm glad Ross has already checked in on some of your questions. I would not likely be able to answer your questions on a leaky valve as I have the opposite problem, a valve that won't open fully. I do, however, enjoy recreational running and continue to work with my cardio and all that I can learn to be able to enjoy life to its fullest until I'm "ready" for surgery.

Ross is right on target in saying that while you have no symptoms, they may begin suddenly, as many others here will attest. As long as you have no real symptoms and are monitoring the condition carefully, it is possible that your docs may allow you to continue your sports. I certainly hope so.

Welcome!

 

[Ross]

Just to verify, just because the valve is bad doesn't mean that you'll never enjoy sports again. Once the thing is fixed, you'll return to the livelihood you so enjoy. It takes time, but you should do well. May I inquire how old you are? You didn't leave much in your profile.

 

[Nancy]

Hi runner-

Welcome to this terrific site. I'm sorry that you have the possibility of surgery hanging over your head. But it happens to the best of people, everyone on this site or their loved ones.

It's wonderful that you feel great. But, as many here have attested, that can be deceiving. Your tests tell the true tale, and your cardiologist doesn't like what he sees. There are many here that had no symptoms, other than poor test results, that led them to surgery, disbelieving that it was necessary. Your heart can compensate for a while for poor performance. But it does that at a price, and I suspect your cardiologist sees that price in your test results.

You've already had one heart attack, and also have a defibrillator implanted for VTs, so you are not without symptoms. On the contrary, it is affecting your heart.

I'm glad for you that you have this appointment with the surgeon. He/she will answer many of your questions, and is the expert help that you need right now. The surgeon can help you make the right valve selection as well.

Please remember that this surgery is never recommended unless it is to save a life. It is not a frivolous thing.

As far as heavy duty exercise goes, right now, in your life, please be cautious and discuss it with your cardiologist and also the surgeon. You already have VTs, which are very serious arrhythmias, and you wouldn't want to exacerbate that condition.

Arrhythnias can and do cause sudden death.

Don't mean to scare you, I just want you to be safe.

Best wishes.

 

[M&M]

Hi Ross and Steve, thank you for responding. I guess I'm kind of thinking Ross is right they will probably suggest surgery. But I'm also like Steve - I want to be in 'waiting'.. But I have a tendency to wait to the very last minute - in other words I couldn't sit at my desk and laugh and breath cause I was having so many vt's that it went on for 3 days before I went to the ER... I have this optimistic attitude and well sometimes its alittle too optimistic. When my ICD was interrogated I had 32 episodes of ventricular tachycardia and they were all over the 160 rate.. Anything less didn't get recorded - so that explained my lack of breathing.. I got put on some meds after that.. :-(

Actually, I just stopped running competitively 2 mos ago - about a month before I found out about my leaky valve. My Electrophysciologist (EP) I call him my electrician - recommended I not participate in competitive sports of any kind. So, I stopped road racing. I had done 23 races with 4 of them half marathons - first one was in Disney World in Orlando - and my last big one was a 10 mile run up a mountain. That was 'tough'... I was going to do the FULL Marathon next year at Disney and I had a possiblility of doing the Boston Marathon. That's when my EP flipped out and said NO - I can't endorse this. So, I stopped - I still run on my own - but much slower and with a head set on and some nice music.. I also do high impact aerobics - he has not suggested I stop exercising entirely - just competitively. I miss the races something terrible. But he's a good doc and I do want to follow his recommendations.

But surgery - now that's a 'big' step. I'm afraid I might be jumping the gun - but everything I've read - looks like I could be a candidate - and I guess its hard to say YES, when I feel so great. Are there others who agreed to surgery who felt great before their surgery and went ahead and did it anyways. I know they try to repair it first and the better shape its in the better chance they can do it. I've been reading material like crazy lately and it doesn't look good. I'm shocked that I could possibly be a candidate. Its just so hard to believe - I keep thinking - surely there must be some area of the criteria that I just don't meet. Therefore I won't get asked.

Thanks so Much for responding to me - I feel better knowing I'm not alone with this. I find the patients are more to the point than doctors - they kind of tip toe and dont' always say what's on their mind.. Maybe they don't me to cry and walk out of the office. I don't know - I just like to ask real people and what their experiences were and perhaps I'll find an area that I don't qualify. I want to be informed when I go into the appt next Thursday. I don't want to sound naive or stupid.. I want to learn as much as I can so if I have to make a decision I can make the best decision for me..

Thanks So Much for your help.
Runner

 

[ccrawford]

Hey Runner - Welcome to VR.com. As to the decision-making process, that will be easier than you think. The docs will do most of that for you. You'll need to get good at asking questions, though, because there is a lot to learn about this stuff. You'll have one major decision - tissue vs mechanical valve. There is an entire section of the site devoted to this, and sometimes even this decision ends up being made by the surgeon because of what he finds during surgery. Plan on doing some serious reading on the site, and feel free to ask questions - that's what we hang aroune here for. Chris

 

[bvdr]

Hi Runner,

Welcome to our website. Whether or not you feel great or not you still have a very significant and complicated heart history.
Numbers need to be interpreted correctly and put into context to be applied correctly. An EF of 54 may be fine if all the flow is going in the right direction but in your case it is not. In fact, often the EF will go up to compensate for this fact. If you could do a comparison of your old and new records it could be helpful. Compare the size of ventricles, the thickness of heart walls and also the amount of regurgitation as well as your EF. The EF can vary from moment to moment and is affected by your heart rate and blood pressure and so used alone can be deceptive.

I have moderate mitral regurgitation and moderate mitral stenosis and am scheduled for mitral valve replacement on the 25th of this month. My EF is 55. I have an ostial stenosis in the diagonal branch that nourishes the mitral valve as well. My aortic and tricuspid valves also have 2+ regurg. Nothing I have by itself would really need surgery but I am very symptomatic and for me the timing of surgery is now. Everyone is different. My ventricular size and function is good but I do have pulmonary hypertension and systemic hypertension.

There are indeed risks with surgery but there are risks to wait and once an expert determines you are at that point I think you ought to listen. If the left ventricle becomes too damaged you may not get the best results from your surgery.

It's wonderful to hear you are so active and I would like to know more of your history and your age and what caused the blood clot in the first place. Please stick around and join in on our forum.
You will find some very wonderful people that have a zest for life and are so very helpful. We also have a wonderful waiting room that is a good place to settle in as you read through past posts and get acquainted with people around here.

 

[Ross]

I can't emphasize this enough. Don't mess around waiting if surgery is suggested. I nearly went too long to have my aortic valve replaced and it made things much worse for my recovery. You don't want to do that.

If it's fear that you feel remember that we all have had that fear. It's perfectly normal. Learning as much as you can from all of us will help put that fear back into perspective. Just please, please, don't make the mistake of toying with this if surgery is suggested.

 

[JimL]

Denial is often the first step in arriving at the truth.

You feel GREAT, but your comparison is to the way you've been feeling for years. There is an entirely different comparison between before surgery feeling and after surgery feeling. I can't believe still how easy it is to move, to walk, to run. But had I waited a few weeks longer to have the surgery, I probably wouldn't have needed it at all.

I also looked at your profile to try and help me understand what you were writing; I was looking for age, location. It would be nice to know more about you.

 

[MelissaM]

HI Runner,

Welcome to the site! Sometimes on a really sunny morning, it is hard to believe the weatherman's report that there will be afternoon showers - yet we all know it can happen. Same thing with your heart - although things look "sunny" for you now because you are feeling great, the clouds can come a rollin' in in a hurry. By then, as many people have stated, it can be too late - your heart has sustained irreversable damage.

Soo . . unlike many diseases, the "golden window" for fixing valves is after your numbers start getting funky (which yours have started to do), and before you feel like total crap and your numbers go sky high. Surgery is scary, but you've had a lot of people go before you - there are a lot of competent docs out there for whom this type of surgery is routine.

And, like many on this board, you may just discover how much GREATER you can feel after surgery. . .

Cheers,

Melissa

 

[M&M]

Oh Thank you so much. I feel great knowing I can talk to others. I was so excited when I found this site - I didn't have time to fill in all the information about myself. I'm 47 - My birthday is September 27th and I'm looking very forward to turning 48. I have a daughter who's a senior in college and I work full time as a secretary - and well I've been exercising like crazy for the last 11 years. I have no stents and no surgerys. I've been extremely 'lucky' all along the way - I don't smoke - I eat very well and I have a fantastic EP doc. But I hate hospitals and I particularly hate needles.. I'm feeling kind of lonely cause all my friends race and I haven't been able to. I had a real nice bunch of friends - We raced all over the state.. Last weekend I tried to go and watch but it broke my heart not to be out there with them. I was 'addicted' - I did some pretty stupid runs in races. I even was shocked several times with my ICD in races. I didn't stop racing though - I stop that race - but the next day I went right back to it.. Just went back on my meds. The shocks hurt like heck - but I found a nice web site zapper board and other people give alot of support - you can ***** or you can make the best of it - and I like to think this little machine saves my life to be able to live it 'fully' and so I don't let it stop me - I let it help me - my family feels better knowing I have it. They were terrible worried until I did get it. I've had to failed vt ablations - and after that I got my ICD. I do have alot of features on the machine - but adrenaline is not recognized and if I get real excited - I can't breath - it doesn't recognize that you need more oxygen when you laugh.. It also doesn't register when you go upstairs - as that's an up and down movement and not straight across - so I had problems with that at first. But after two years I've managed to get all the 'kinks' out and things are finally go great - until this.. I was setting new personal records in my running and I was doing so well - broke my heart to stop racing. But I feel lucky that I can still run - so I try not to complain. I like to focus on what I can do and not on what I can't.. So I'm happy. But being only 47 I'm concerned about getting a valve - if I need one I hope to get one that will last me for awhile - as I plan on being around for a long time. My battery in my ICD only last 4-7 years and then they open you back up and insert a new battery. Its just a small incision around the collar bone. Its not open heart. Its a out patient thing. But gee I think I'm getting more bionic everyday !!! Maybe I can get 8:00 minute miles if they keep this up.. I only wish..

I'll check out the web about the various valves - and thanks for suggesting that. I hope this is all just 'in case' and I won't need it.

I really appreciate your input and advice. Are you really sure you think I'll need one? Is there anyone who thinks I won't need one and 'why'? I hope if I do its not a mechanical one cause I don't think that coumadin thing would work well for me - don't they have to get shots to see how thin their blood is? I read somewhere - they might come out in the near future with a mechanical one that won't need that. I think a repair sounds the best - but IF I have surgery - I bet the surgeon will decide once he opens me up.. But a repair is only going to last so long - I wonder what's the longest anyone ever got out of a repair? I hear this is a really 'art' to surgery and you want to get someone who's had alot of practice. The hospital I go to does quite a few and I've heard their very good. So that's good to know. I wonder if I should get a second opinion before I agree to any surgery - or perhaps I fit the criteria alot. I did check out the criteria from the AHA and well I have several criterias that I meet - but I don't meet them all. I've never been in a-fib and I have no symptoms and I feel great. I think having the enlargement and low EF - is what's killing me - of course the vt's are helping either - but my EP has those under control and I've only had two vt's in 5 mos... That's great.. So at least that's under control. But come to think of it - I asked my EP on a scale of 1 to 10 where do fall into this. He said well if 10 was the very worse and he's no valve expert but he's a cardiologist as well as electrician and he thought I was a 3-3+ possibly 4. I think its cause my echo got worse from my last echo which was last Feb. I guess my numbers didn't get any better or stay stable. I guess that's what you want to get is to keep your numbers stable. I wonder if there's anything you can do to help that?? I wonder if I can make my heart size go back down and how that is done? But I'll take your advice and I'll not wait to long.. I'll take the advice of the surgeon as well.. I'm sure they dont' do surgery unless they think its really really necessary. But the trouble is I feel so GREAT..
Thanks
Runner

 

[Birky]

Surgery

Surgery

Hi Runner, I was in the same position that you are in now. Should we or shouldn't we do this surgery. I was diagnosed 20 some years ago with the mitral stenosis and reg. Have gone to the same Cardiologist for the last 15 years and he kept a close eye on it. I wasn't a runner but did excercise to keep in shape. Last Dec. went for my regular check and they did an echo and found that it was ready. I have to admit that I had not been feeling good for the last 6 mos. 3 rounds of upper respiratory infections, really fatigued and short of breath. I couldn't do the stress since I was coughing too much and felt horrible. The Dr. scheduled a TEE and Catherization in January. The tests showed that I was on the bubble. They did find blockage in an Illac artery and they are still watching this. The cardiologist told my husband that he thought I was fatigued from the holidays and stress. After considerable deliberation, we decided that it was time so we saw him again and then he made the appt. with the surgeon. Went to see the surgeon and he agreed that it was time for the surgery. Both thought that there was a 90% chance of repair. When the surgeon got in there, no chance of repair. Had to replace with mechanical valve. If the surgery had been done sooner than I would have had a chance for repair. All the symptoms that I totally ignored for years are gone. Blamed alot on age and stress. Not so. When I saw the cardiologist after the surgery he said"you were right for not waiting and I was wrong". I could hardly believe this came out of his mouth. They didn't give me a tissue valve because the mechanical is supposed to last my lifetime and he didn't want me to go through the surgery a 2nd time. I feel great and are doing more than I have in years. I have been walking and really need to get back to the gym regularly.
Good luck.

 

[MelissaM]

First of all, take a deeeep breath. Ahhh. That's better. You have time. Your questions will be answered. In getting them answered, I am confident you will feel better about your current situation. So go ahead, relax a little bit - we're here for you.

Take a couple of minutes and search through the boards, browse a bit, see what kind of answers you can find. We'll see what we can do for your other questions.

As someone going in for a mitral valve repair, I understand the desire to be "fixed" with your natural tissue in place. Of course there are no guarantees that I won't wake up with an artificial valve OR that the repair will last forever, but for me, it is a good starting point. I have done my part in getting to a competent surgeon at a competent hospital, and that is about all I can do on this end. For me, the rest is in God's hands.

It is a total bummer to have your social and racing life disrupted by your heart. I feel your pain. I am totally addicted to racing Hobie cat sailboats, and continued to push myself to do so, as I not only enjoyed the adrenalin rush of racing, but enjoyed the comradarie of my fellow sailors. Now, looking back, I wonder how much of my 'pushing' contributed to my decline. . .

Hang in there - this is big stuff and not easily digested, but you have come to the right place to get support.

Melissa

 

[M&M]

Thank You Marcia and Melissa. Your so right - so much to learn. As my husband always said: Knowledge is Power - so I learn and learn and its hard to digest some of it at first - but the more I read the more I digest and I can honestly say - Nothing surprises me anymore. I may not like it - but I'm not surprised. I had so much to learn when I got my ICD - gosh I had to learn about an insert on top or in deep I think its called subpectoral and pectoral or something - I went for the on 'top' and not inplanted under my muscle - because the recovery time was much quicker. I couldn't imagine not raceing for mos - so I did the on top and I was racing again in 2 weeks. Took one week of for the operation - I'm telling you I was NUTS - I should have taken more time and recovered fully - But it was just so much FUN to race. I'm out there running holding onto my ICD so it doesn't bounce up and down for fear the leads would come off and they would have to go in and reinplant. I would never suggest anyone try that - I was NUTS.. but I'll tell you I get it because if I put my life on 'hold' for every heart problem - I would never LIVE - whether its angina or artery spasms or shortness of breath - over the past 11 years I've had it all and then some and I kept 'waiting' for them to fix it so I would be safe - and I found I wasn't living at all - I just 'waited' and so one day I said - thats it - no more waiting to live - I do it no matter what - and I enjoy each and every day - and for that I have no regrets.

Do either of you know about this rating system - 3-3+ or possibly a 4 status out of 10. I've seen it in a couple of posts and wonder if it means more than just a conversation but is more relative to my 'condition' of rating?

I asked my doctor is my exercise caused this and he said no it was my heart attack as its the same area and its just deteriorated over time in all probability. So I feel confident I didn't make the situation any worse. I also think to go 11 plus years with heart disease and not have open heart - the exercise may well have helped me more than if I hadn't exercised. My arteries are in relatively good shape as far as clogging goes. Just recently I had to be put on cholesterol meds - and my diet hasn't changed but I'm menopausal now - so I think that changed my numbers and I'm on a low dose of pravachol. Plus I take atenolol and mexiletine for my vt's. ITs good to hear from others and to know that have been there and done that. Although the histories are alittle different - you all worked hard and have gotten through this - and thats a big help to me. I guess I've made new 'friends' - Next Thursday - I'll know more - I expect he'll want to do a catherization and see if I've had any more cloggage to my arteries. I've had about 7 of those done.. Their not to bad. I've gotten use to them.. My family has adjusted to me going in the hospital - its not unusual - I go from my desk to the gurney and back to my desk. No time to rest. Just patch me up and ship me out.. I have a really nice ep doc though so that I feel confident that if he thinks I need it - then I need it. I would never have quit my racing if not for his recommendation to do so. I have a tremendous amount of respect in his medical judgement. That's a big help. I had a terrible doctor for years and years and I really love this new one. He's done so much for my electrical system - I use to be in awful shape and my old doc never listened to me. Sometimes I would have to fight with him to get a holter monitor to show him my arrhythmia.. He kept saying your having pvc's !!! I don't think so doc. I finally got a monitor and showed him... He was fired shortly thereafter.. only cause he told me vt's were benign !!! That's why I read and study everything I can. But you people probably know more than any heart study or heart report and I'll learn much from this web site..

Thanks
Runner

 

[MelissaM]

Runner,

Not sure about the scale of 1 to 10. There is a scale of 1 to 4 fo measure the amount of regurgitation. . .

Melissa

 

[Ross]

Someone had posted the representative numbers, but do you think I can find it now?

I do know

2+ is mild
3+ is moderate
4+ is severe

 

[Birky]

numbers

numbers

The last time I saw the cardiologist, he said that on a scale of 1 to 10, I was at 8. So I guess it was time.

 

[JimL]

Hi Runner, I was 46 when my AVR was done, and I've seen two birthdays since that I would not otherwise have seen.

You wrote, "I hope if I do its not a mechanical one cause I don't think that coumadin thing would work well for me - don't they have to get shots to see how thin their blood is? I read somewhere - they might come out in the near future with a mechanical one that won't need that."

If you need surgery, you and your surgeon can decide what kind a valve, with your surgeon getting the final decision. I've never regretting my mechanical valve. There is a lot of misinformation about coumadin -- some of which was true years and years ago, but is no longer true.

I get my blood checked each Friday, but many wait much longer in between checks. The nurse takes one drop of blood from my finger, gives me the read-out, and I adjust my coumadin dosage accordingly. It takes about five minutes, total.

 

[M&M]

Hi Ross - he did say my leak was considered moderate to borderline severe - so I guess that would fall within those numbers you mentioned. Thank You - I thought when I was researching I saw some 'numbers' that coinsided with his numbers. Although maybe we were talking about two sets of numbers on my visit - I can't remember - I only remember the 3-3+ possibly 4. I'm sure the surgeon will want to check it even further. Its my understanding that echos are good but catherizations are a better way of medically finding out how the valve is working. I've had so many of those - mostly to check clogged arteries though - I don't remmeber anyone mentioning my valve other than right after my heart attack - which my old cardiologist mentioned a minor leak - and to take antibiotics when I go to the dentist. Its been 11 plus years since then - perhaps its taken this long to get to this severity. If indeed that's what the surgeon finds out. Thank You Melissa and Ross for responding and letting me know what you know. I appreciate it.

JimL - You know I have been reading alot about what you say about coumadin and alot of posts are saying its gotten a bad rap and its not that bad. I did say to my cardiologist - If and when the surgeon goes in and depending on what he finds - if I need a mechanical valve - I would have to go on coumadin and I don't have enough sick leave to keep checking this. He said: You can prick yourself at home and adjust it. Boy, he has an answer for everything. OF course I kind of frowned and said: Prick myself.. OKAY - Boy that would take some getting use to. Give me a vt anyday - but a needle - man I practically cry. Well, it hasn't happened yet - and as I've learned with heart disease - wait 5 minutes and everything changes. Its kind of like the New England weather. Thanks Jim for giving me some 'good' news about this coumadin stuff. I like to hear things like that.

Thanks Everyone
Runner

PS - I almost forgot to mention as someone asked: What reason did you have a heart attack. I can only say - my husband and I were having a passionate night of sex when my ticker thought I was 'pushing' just alittle to much and decided it had had enough and gave me chest pains - nautiousness and even after we were all done - I was sweating up a storm - I thought - gee something must be wrong.. My husband replied - you look fine - oh well dear call an ambulance anyways - cause I dont' feel fine.. Luckily my 'old' cardiologist was in the ER and although he diagnosed my MI - he also had just taken me off my high blood pressure medication - 3 mos previously !!! I'm sure it was just an oversight - and I never pursued it - I just let it go and I moved on.