Aortic Insufficiency

[Oscar61]

Hello to All! This is actually the first time I've been to VR.com so needless to say this is the first time I am posting something. I guess I'm trying to get some things out, questions, concerns, thoughts, etc. more than anything. Any replies either by posting on the site or directly to me through email would not only be welcome but appreciated. I will attempt to try to get to the point but can be longwinded at times so here goes ....

I am a 30 year old male who was diagnosed with moderate to severe Aortic Insufficiency in May of this year (about 6 months ago). I have been through all of the important numbers associated with this problem, most important of which seems to be the size of the left ventrical from continual regurgutation (leakage). I have been told that "normal" can range from 4.5 (thats cm....translates to 45 mm) on the low end of a "normal" size heart up to 5.6-5.8 begining to be considered abnormal. Upon the initial finding of my condition I was told that my LV was 5.0. Upon my 3 month checkup that number had raised to 5.4. I had just this past week had my 6 month checkup and that number is now 5.6. I have been told by my cardiologist that their can be up to a 0.3 difference in the actual size as being that the ultrasound isn't a "perfect" science. I do fine on my stress tests...level 5. My cardiologist indicated that the American Cardiac Society has pretty strict guidelines as to when people should begin to consider surgery to have the Aortic Valve replaced and that number is 7.5 cm. She said however that she, along with "99% of other cardiologists" tend to disagree with that and in my case she would be thinking more of discussing surgery in the 6.0 range.

Incidentally, My cardiologist has come right out and said that if she were going to err it would be on the side of safety. It was indicated that most Cardiologists would only have their patients back every 6 months to a year. I am on a three month checkup schedule for no more reasoning than observation. In addition I have met with another cardiologist (within the same practice though, whom I know on a somewhat personal level) and with a surgeon and they both seemed to lean more towrds the direction of the facts being that it looked as if i might not have to have surgery for 5-10 yrs. But my mind doesn't tell me that, and without putting it into exact words it seems as though my primary cardiologist seems to somewhat feel the same way.

Getting more to my point and issues, I have recently in the last three weeks or so begun to have very slight feelings (only at night though when my mind is running) of a certain level of shortness of breath. To be honest, I dont even know if it is shortness of breath. I never experience it during day hours, and I never experience it when exerting myself. Something that has gone unmentioned up to this point also is that I have been diagnosed with a slight anxiety disorder. So for those of you out there who are familair with this you know that this "slight shortness of breath" could also be my Anxiety. I didn't take well to SSRI's so I am taking Xanax 0.5 mg as needed. But I have been using that a little more as of the last few weeks.

I have yet to go for a second opinion which I had just spoken with my cardiologist this past week about. I have full faith up to this point in my doctor's diagnosis and instructions. As she would say, "just go live you life and dont change anything". Don't restrcit my diet or excercise, but I also feel as though it can't hurt to see what someone else has to say. I have genuine concerns about having to have this surgery at the age of 30 or 31 and then having to have it again at 45-50 and possibly a third time in my 60's to 70's. This concern at certian times overwells me for short spurts, and then i get back into doing what Im doing and it slips my mind for a while.

I guess overall Im just looking for any feed back from anyone who can relate to my situation on any number of levels, whether it be age, similair diagnosis, and even more so the anxiety end of things. Is this anxiety or no?!!? I guess no one can say that for sure. Also if their is any new information or articles I should be aware of in regards to surgery, new testing, etc. for Aortic Insufficiency.

Thanks for taking the time to listen, and again any input would be great.

Thank You Genuinly,

Jay

 

[Ross]

Hi Jay and welcome aboard

I'll say this, your Doc seems to be one of the cherished few that actually knows something. Hang on to her! It would be well advised to have surgery before the heart enlarges too much. If it does, you may never get back to normal. The shortness of breath is related, I would bet, to the problem. Sure anxiety could play a role, but I'm betting on the problem at hand.

Do yourself a big favor and throw those reop year numbers out the window. That's based on old statistics and on very old patients. The likelihood of you having another reop in 25 to 30 years is more in line with todays valve products. There are no guarantees though. You could get a new valve today and have to have another tomorrow. It's happened before.

Accumulate as much knowledge as you can on all of your available options, make your decision based on what you feel is best for you, go forward with it and live a long life!

Others will be along to offer their advice and you certainly came to the right place to get it. We are a huge family here, so dig in anywhere and stuff your head full of information or as much as you can take.

Welcome aboard!

 

[Buzz Lanning]

Aortic Insufficiency & AVR

Aortic Insufficiency & AVR

Jay,

Welcome to ValveReplacement.com!

I, like you, was diagnosed with aortic insufficiency (AI) and moderate to severe regurgitation. My condition was discovered by accident during a routine medical exam in October 2000. Four years later, I required aortic valve replacement / ascending aorta repair at the age of 46 (July 6th).

To give you a point of reference, my conditions at the time of surgery were: The left ventricle end diastolic dimension (LVEDD) was 7.3 cm. The left ventricle end systolic dimension (LVESD), which is also very important, was 5.2 cm (ejection fraction ~ 54%). I was monitored during those four years with 6 month echocardiograms. My LVEDD was never less than 6.2 cm, and probably was over 6 cm for many, many years. In general, I had no symptoms other than pounding heart and high systolic blood pressure (which was reduced with an ACE Inhibitor). Note: When my condition was originally discovered, the LVEDD was 7.2 cm. However, once I started an ACE Inhibitor to reduce my blood pressure, the LVEDD quickly decreased to 6.2 cm. From there, the LVEDD (& LVESD) slowly increased over time until surgery was finally required.

I was in fairly good shape prior to surgery, being a runner & long distance swimmer. By the way, I continued exercising until one week before surgery, although at reduced levels. Today at 5 months post-op, I feel great. I've been running regularly since completing cardiac rehab in early October. My life is pretty much back to normal!

To help with your research, I've included a website for the ACC / AHA recommendations for managing patients with valvular heart disease; an excellent resource document used by most cardiologists. I would recommend downloading the PDF version which includes tables, etc. Here it is:

http://circ.ahajournals.org/cgi/content/full/98/18/1949

If you have any further questions, just send me a note. Good luck and try to take each day in stride. In hindsight, I wish I'd worried a little less . . .
Buzz

 

[bvdr]

Jay, welcome to this site.

Buzz already steered you to one of my favorite sites. It contains much of the information the the cardiologists and surgeons use to make their decisions.

I do want to remind you of the importance of maintaining your own medical file with copies of all your test results. You need to be an active participant in your care. It may seem strange and overwhelming right now but it won't stay that way for very long.

You are very fortunate to have the time to do your research and become informed of your options. I also had that luxury. Some here had only days or even hours from diagnosis to surgery.

Make yourself at home and plan to spend some time here with us. It is a great site and there are many many people here ready to share from their experience and research to help make things a little less stressful for you.

 

[Gemma]

Hello Jay and welcome

I have to agree with Ross and Betty - you're very lucky that you have a cardiologist who wants you to have your valve problem fixed before it becomes permanent heart damage, and that you have time to look into your options. From everything I've heard, it's definitely best to get a valve replaced before the numbers get too high- the more damage is done to your heart, the less likely it might be to recover fully post-replacement. But it seems like you do have a little time to think things through.

My boyfriend Jim was diagnosed as having aortic regurgitation a couple of weeks after his 26th birthday last March. He had been getting stabbing pains in his chest at night (like someone standing on him in a stiletto heel he tells me) almost every night so I bullied him into going to see his GP. The upshot of it all was that he ended up in a cardiologist's office completely unprepared for what he was going to be told - he needed a valve replacement within 12 months .

I believe his LVEDD was about 7cm at that point - we discovered recently that just prior to his surgery (9th December 2003) it was 7.7cm. At his pre-op tests his BP was 160/30. Because we had no idea about the regurgitation prior to March, we don't know how long it took for his LV to get to this size, but Jim told me recently he'd been getting chest pains for a couple of years before he went to his doctor intermittently so I'd guess that's when things started to go bad.

Now - the good news . In spite of his seriously enlarged left ventricle, and his surgeon's belief that it would never get back to completely normal size, it was 4.3cm just 4 weeks post surgery His blood pressure is now a nice healthy 125ish/75. Incidentally, his cardiologist seemed surprised that Jim was on his surgeon's "urgent" list (7 months from referral to surgery) - I guess if he hadn't been his LV's recovery may have been less successful.

It did take a little longer for Jim to notice an improvement in his health than maybe it would have done if he had more symptoms prior to the surgery - he was still very active before his surgery and only had a couple of occasions where he had to slow down walking uphill. But now he's absolutely fine, and in fact has just started trials riding again (don't know if that's got a different name in America - it's where you take a motorbike and ride it up and down ridiculously steep/rocky/slippy terrain!)

One question I have from reading your post - your re-op dates suggest you're thinking of a tissue valve. Jim has a mechanical one which he and his surgeon agreed on to hopefully avoid the need for a re-op. There's also the Ross procedure which if successful has a similarly low risk of re-ops I believe. The Ross is trickier to perform though and involves 2 valves which is the reason Jim chose a mechanical valve - so, now he clicks, takes warfarin every day, and has to have blood tests to check his INR (blood-clotting time), but otherwise absolutely nothing has changed about what he can and cannot do. I'm just mentioning this as I think a lot of people around our age group tend to choose the tissue valve to avoid warfarin, whereas the mechanical valves deserve at least serious consideration, even if you don't go for one in the end. One of the original members here, Nancy, will no doubt tell you about her husband Joe - I think he's had a mechanical valve for 26 years or something and it's still going strong.

Blimey - I seem to have rambled on for long enough now .

No doubt you'll have a ton of questions, so anything that's on your mind - just ask and someone will no doubt have been there, done that.

Take care, and good luck in your decision-making .

Gemma.

 

[Oscar61]

Reply to Gemma on Aortic Insufficiency

Reply to Gemma on Aortic Insufficiency

Gemma,

First I would like to say congratulations to you and most of all Jim on a healthy recovery. Glad to hear it had and continues to go well.

I guess a few things I took away from your post in particualr puzzles me. You had questioned me about the times that I had stated for re-op, and commented that I must be thinking of getting a tissue valve with these. You had also mentioned that Jim decided to go with a mechanical because his doctor felt as though this would be the best case for not having to have surgery again.

Through much discussion with multiple cardiologists, as well as a surgeon, and further investigation on my own, I've learned that tissue valves (as a general rule of thumb) last 8-12 years, possibly shorter if you are younger becuse you are putting more continual strain on the heart through more activity. My numbers on re-op WERE actually based on mechanical valves. It had been indicated to me that mechanical valves last (generally) 15-20 years, and again the younger you are the shorter possibly becuase of more strain on the heart with a more active lifestyle. you do of course get the exception to the rule where they may last longer. But if I had read your post correctly You had said that Jim's doctor felt his mechanical valve would give him the best chance of no further operation being needed. I don't see anyway, even in a best case scenario of that valve lasting 25- 30 yrs, that he wouldnt have to have surgery again at the latest in his mid 50's if he is now at the age of 26??

I mention all of this only because I wonder (and with you being overseas) if you have differen't and even possibly more acurate information than I do. Any respnose would be greatly aprreciated and again I am so glad to hear the two of you are doing well.

Hopefully I'll hear back from you soon,
Jay

 

[Oscar61]

Thank you to ALL so far

Thank you to ALL so far

I just wanted to post a quick thank you to everyone who has taken the time to respond to my situation. I have attempted to contact everyone indiviually through email (except for Gemma who did not have that option listed, and therefore I posted my response on the forum ). So for those of you who have those spam filters on check for my response in your spam folders if you haven't received it because I had some follow up questions and a few personal words.

The time that you all take to inform and comfort others matters greatly and makes a difference daily in peoples lives. Thank you again and keep the thoughts and advice coming. I/You can never have too much!

Jay

 

[MomOfThree]

Hello!

Hello!

Hi and welcome!

It seems like your cardiologist has given you lots of information. That's great!
I'm 43, learned about my aortic stenosis about 4 years ago and now it's time for surgery. I just learned that I need this surgery about 3 weeks ago. And, now I'm scheduled to have an AVR on 12/17 in New York City.

I think I'm going with a tissue valve. Anyway, the things that I have heard is that a mechanical valve could potentially last a long time. At my age, I heard, I may not need a re-op with a mechanical valve. No guarantees, of course.

I'm new to this site but if you haven't already, check out the pre-surgery and valve selection forums, where there's LOTS of discussion on valves, etc.

Please keep in touch, and, ask lots of questions!

-Martha

 

[Gemma]

Hi again Jay,

I've fixed the email problem - hadn't ticked the box to receive email but now anyone who fancies emailing me can do .

With regard to the tissue valves, it was never really something we considered so we didn't look into them much. But I believe some have been mentioned here recently which are thought to last about 20 years (less for younger patients) which is why that's what I thought you were talking about. Bob (tobagotwo) may well know - he posted a very succinct summing up of the options and longevity of various valves recently but I can't seem to track it down. Bob?

Jim wasn't keen on the Ross procedure because of the need to operate on 2 valves (leading to potentially twice the problems if it were to go wrong), so that ended that road of enquiry. (All Rossers - don't go getting het up that's just what he decided!)

Jim's surgeon told us his Sorin valve (made in Italy) could last 200-300 years, and this is the reason we hope it should outlive him! This is obviously barring any other complications in the future, but based on the valve itself a re-op may never be necessary (at this point I have everything crossed while banging on my wooden desk ). Of course the first mechanical valve replacements were only done something like 45 years ago, and valve design has radically altered since then, so nobody really knows yet how long the newest designs will last.

I'm not sure if the Sorin valve is used much if at all in the US, but you may want to look at their website - www.sorin-cid.com - the valve seems comparable to the On-X (www.onxvalves.com and www.mcritx.com) in terms of valve area, design, pressure gradients, etc. As a precision engineer Jim was impressed with its design specifications.

Both his surgeon and cardiologist have been very honest throughout, so I'm fairly confident with their opinion. I mentioned Nancy's husband as I believe he had a second valve replacement a couple of years back (now has 2 mechanical valves) and the surgeon left the other valve alone - the 26 year old one - which suggests they last a good long time. Hopefully if she reads this thread she'll be able confirm this .

BTW, to clarify - Jim's regurgitation was diagnosed March 2003 - op in December 2003 - he'll be 28 next March. 1 year of clicking merrily along next Thursday .

This is the second time I've written this - pressed "back" by mistake and lost it all before so no doubt I've forgotten something! Hope this clarifies what I meant though.

Gemma.

 

[tobagotwo]

Welcome aboard. New faces are always welcome.

Your cardiologist sounds like she has spent some time considering valve issues, and that's certainly a positive.

I would place the likely life of a mechanical valve to be 25 to 30 years, not the 15-20 you were quoted, if you do not have myxomatous heart tissue. It is generally the anchoring tissue, an expanding aorta, or other heart issue that causes a reop for mechanical valves, not a failure of the product itself. In fact, with today's mechanical valves, 30 years may be a conservative estimate for those without other intervening issues.

It would not be unreasonable to also up the estimate for animal valves (often called allografts or xenografts) to 15-20 years, even at your tender age, based on recent anticalcification introductions.

And, of course, there's the Ross Procedure, which is particularly interesting to younger valve patients, and which might arguably be the premiere choice available at this time.

As a nonprofessional, I can't help but say that I disagree with a blanket statement that 6.0 is a safe point-in-time to go to surgery, or that annulus size alone should be the determinant for surgery. Nor do I think that 99% of cardiologists agree on that - which is why there are the 7.5 cm guidelines from the American College of Cardiology and the American Heart Association. Perhaps that is a popular local stance in her practice circle. You will find a great deal of discussion of the "when to do it" issue in the forums.

My own valve was replaced at a larger valve annulus opening than is often recommended, as were those of many of the people here. The day after, the surgeon noted that the valve was in extremely critical shape, and so badly calcified that two of the leaflets were glued completely together and immobile, and the third could barely move, as it was blocked by calcifications. I might well not have made it to a 6cm ventricle, especially had I picked up a snowshovel that winter, or taken out the garbage. My LV was at 5.7cm, which is at the top of the "normal" scale, but it had climbed up from my original 3.5cm.

Much of the "when to go to surgery" argument seems to be a control issue between the cardiologists and the surgeons.

The cardiologists seem to want to show that they can control the damage to the heart, and allow the patient to keep "his own" equipment for as long as possible. This is done with increasingly powerful drugs with side effects (which most cardiologists ignore as beside the point), and eventually lifestyle restrictions. To an extent, this is workable. However, some cardiologists will allow the heart to enlarge enough to create permanent damage (damage that will not reverse after successful surgery), because they feel the damage will still be "manageable" after surgery.

Or, as it is not an exact science, they can simply misjudge. It is a concern that to avoid a 1% risk in surgery, they may at times subject their patients to higher risks by overwaiting. Common sense dictates that a heart which is at its limit of damage and enlargement before surgery will not likely fare as well afterward, nor recover as quickly.

The surgeons, of course, want successful surgeries. They want their clients to not just live through the surgery, but also compliment their surgeons on the benefits they received from the procedure. They want their patients' hearts to be as capable of fast and full recovery as possible.

The problem is, you don't want to have OHS on a heart that doesn't need it yet. While the result of successful surgery is a relief of the symptoms (and it is a wonderful relief for most of us), the clock starts ticking right after surgery for either the risks of Coumadin use or toward the eventual replacement of a xenograft.

Multiple indicators seem to make the most sense for generating a reasonable decision. This would include heart chamber and wall size increases (as measured against yourself, not the "norm" criterea on the reports); the advent of a combination of stenosis and regurgitation and their realtive severities; symptoms as reported by the patient (shortness of breath [SOB], a rise in the number of palpitations the patient experiences (particularly noticeable at night); angina in any form [mine just felt like a tight spot or lump in my throat, or a feeling of breathing in cold air], general fatigue, and/or apparent circulation changes (e.g. abnormally cold hands or feet); the pressure gradients across the valve; and the apparent valve annulus (opening) size.

Please note in the ACC/AHA guidelines that stress tests (exercise tests) are not considered effective measurement tools for symptomatic valve patients, although many cardiologists still prescribe them offhand.

It sounds like you have a while to go, so as you develop time to pursue it, please look through the Presurgery, Valve Selection, Heart Talk and other forums, being sure to look into at least a year or so's worth of history to locate many good posts. Do remain aware of the posts' ages, though, as some things, like xenografts, have advanced dramatically in the last year.

Ask questions as they occur to you, and feel free to vent when you need to. This is a great way to spare your family a little bit of the angst among others who know what you're going through firsthand or as significant others.

Best wishes,

 

[alan_delac]

Jay,

I am 43 years old and I have similar problem with my aortic valve, however my numbers have been constant for the last 14 years with LV=64mm. I must say that I'm happy that I haven't had an operation yet as I lived reasonably care free life. If my heart was enlarging from one eco to another I would consider an operation before LV got to 75mm, however if your heart finds a stable spot and you feel well I wouldn't rush with the operation unless it is recommended for some other reason.
I don't think there is a simple answer and I think that Bob's comments are well balanced and informative.

Best wishes

Alan

 

[tobagotwo]

I realize I sent some mixed messages here, and I apologize for that. Jay sent a picture of regurgitation and LV enlargement, and I swung off on a tangent regarding judgement calls on aortic valve opening sizes. Some days, it's easy to believe I might have left something important with the pump...

The appearance is that Jay is becoming symptomatic, with the SOB issue. It's always somewhat difficult to tell if it's real or panic, as we're measuring ourselves. However, with his aortic regugitation and insufficiency, it would not be surprising at all. And SOB and palpitations (which he has not mentioned having) are frequently most keenly felt in those moments of silence, when we are alone with ourselves.

In saying I disagreed with the 6.0 as a blanket statement (because of the 99% comment), I wasn't grokking that Jay's cardiologist was really referring to Jay's particular situation, and not a generalized scenario. Jay assures me that is the case. As such, it seems much more reasonable in context.

Regardless, the pursuit of surgical remedy at an earlier point in time, rather than delaying until there is permanent damage, is something I am particularly in harmony with, and that is what his cardiologist is supporting. So I really should side with his cardiologist, who's making positive steps in that direction, rather than being so adamant. Viva la revolution...

Once you start to become symptomatic, I do think there is a case to reduce your most strenuous activities, to lessen the impact on your heart. I also agree with the AHA guidelines insofar as the unreliability of stress test results for symptomatic valve patients.

Best wishes,

 

[Nancy]

Hi Jay-

Welcome to the site.

My husband who is 73 years old, had his aortic valve replaced when he was in his mid forties. He also has a mitral replacement and has had a repair on the mitral, so he's had 3 valve surgeries. Both his valves are mechanical. His aortic valve will soon be 28 years old, and so far there are no problems with it.

It sounds as if you have a cautious and wonderful cardiologist. Any time you have a cardiologist who wants to keep close tabs on you, it's a terrific thing. The three month observation is a good thing for you. It sounds as if you are feeling some beginning symptoms. Many people here will tell you that sometimes a valve can go downhill faster than they or their doctors anticipated, so keeping an eye on you is important. Maybe it will stabilize, but at least your cardiologist is acting as a safety net.

Joe has had shortness of breath prior to each of his valve surgeries. It's one of the first things that happens symptomatically, at least for him. And his SOB has happened at night, and then eventually at other times. He also has congestive heart failure and can get SOB, even now, if he doesn't watch every item of food for sodium content, but he has many other medical conditions which contribute to this. At least now, with his valves taken care of, his SOB is controllable with diuretics and diet.

Have you mentioned your SOB to the cardiologist? If not, it would be a good idea to run it by her. There might be something that could be done to minimize this. At any rate, it is a symptom that is important in the scheme of things and your doctor should know. Let her sort out whether it is from anxiety or heart. Sometimes when people experience this with heart problems, it could then lead to an anxious situation. But it may not be totally from anxiety, so find out what's what there.

 

[McCln]

Welcome Jay,

Welcome Jay,

Welcome to the information board. I am with the rest here in saying you have a great cardio to be so informed and you feel comfortable with. I was born with a congential birth defect, a heart murmur in the aortic valve. I had the repair done at age eight and 28 years later, replaced with St. Jude's valve. I do not see more surgery for 20 or more years, if ever again. There is no absolute guarentee, but 20 or more years are better. I am more active and no shortnes of breathe since surgery. I do have type 2 diabetes with very little problems, except toe numbeness and sticking myself twice a day. Changes is diet and exercise make a ton of difference. Keeping active as much as you can tolerate is great. Keep your eye on your shortness of breathe and mention to your cardio if you start to tire more easily. Otherwise, keep doing whatever you are doing. Keep apraised on your condition and talk with the doctor often. Education and assurance is great for peace of mind. Keep hold of the cardio. Welcome here again, you have many friends here.

 

[Oscar61]

HELLO ALL,

I just wanted to say thank you again for all of you taking time to respond to my continuous questions. At certain times it can all be overwhelming to absorb and think through. I think I'm just at a point where for whatever reason I'm going through that few week period right now wheir it seems to be on my mind constantly. When I'm busy the concern (or anxiety) seems to subside.

Incedentally, I have attempted to respond in one fashion or another to anyone who has posted directly through email, if not with direct questions just to say thank you.

Thier have been a number of replies to my questioning initially as to whether this shorness of breath I had and have been experiencing is attribituted to my condition advancing or if has more to do with an slight anxiety disorder I have been diagnosed with. It seems as though their is a small consensus that it probably has to do with my AI more than anxiety with the people here at VR.com. This seems to be the biggest thing I'm dealing with right now in a psychological aspect. It's a very slight shortnees of breath. When I'm occupied and doing things it doesnt seem to even be there. But as soon as I seem to not be occupied with things and my mind starts working is when I notice it. Don't notice any type of restrictions (it seems) with physical activity. Been off and on for about 4 weeks now. Been to my cardio as well as a psychiatrist. The cardio said their is a possibilty that it could be an initial sign, although she ( as well as another cardiologist I've seen recently) would seem to lean against it based on my numbers in regards to my AI, and the fact that have no problems with my stress tests at all (just went in for one again this past Friday to shuffle through some of this SOB and went to level 5). The psychiatrist, with whom I've only met once, but who I explained the full range of my conditon to and he is familair with, seems to definately think I have anxiety over this. But I guess that's their job to think that .

Thanks Again to all. Hope you also are all doing well and as always, any thought on ahything I've written please respond.

Jay

 

[francie12]

Hi, Jay--Just jumping over from my initial question to yours...Between these two threads and others, I'm getting a great education on Aortic Insuff./Regurgitation and related issues. Thanks to everyone. Just wanted to weigh in with a personal experience. In the weeks preceeding my son's first follow-up 6-mon. echo, when I was at the height of my computer research I realized that my own heart was behaving oddly, "skipping" beats, thumping and flopping. My personal doctor prescribed an echo and a 24-hr. holter monitor and determined that I was having alot of benign PVC's. The interesting part of the story was that from the time I received my son's echo results (showing little or no progression of his AI and LV dimensions) I had not a single PVC for five days! They began again when I resumed my research. This could easily have been a coincidence, but my gut feeling tells me my PVC's are stress related. I hope most sincerely that your SOB is not the beginning of being symptomatic. It seems it's very difficult to judge how much of a role anxiety plays.
Just wanted to mention, in case you haven't discovered it, the Cleveland Clinic Heart Forum. If you can actually post a question (they only take two a day and it's very hard to get in) their world-class doctors give highly informed answers. I believe they also provide a service for a fee that amounts to an on-line second opinion. You need to have all records sent including films, etc. I'm strongly considering doing this for Matt. All the best, Jane

 

[AmyCe]

Hi,
My experience is very similar to yours in a number of ways. This past Jan, I went to the doctor for gall bladder problems. In that visit, my doctor asked me if I knew that I had a heart murmur. I said, yes, my pediatrician had told me that it was innocent though. He sent me for an echo. I was diagnosed with a bicuspid aortic valve and moderate to severe aortic regurg. Like you, I had no symptoms.....until I was diagnosed. Then of course, I started to notice them. Whether they were real or not I'll never know. I had surgery to replace my valve and my aortic root one week later. I was 30 at the time of my surgery. I received a mechanical valve. I also think about surgery later on in life. But, I try to stay positive and remember that even if my valve would only last 10 years, doctors will have made significant strides in that time frame. Anyway, if you have any questions, I definitely know where you are coming from.

Amy