50 and healthy but just told mild to moderate aortic stenous due to biscupsid valve

[gatorsurfer]

Hi and I am brand new

I am 50 and in very good health. I have known I have I have Bicupsid Aortic valce since I was 21 and had an extensive physical for Naval flight program. I was accepted and passed but doctors said I would deal with it later. At 21 you think no big deal and hell I will see you in 30 years. Well 30 years have flown by.

I have no symptoms and went in for physical and insisted on Echo. My family docotr called and said mild to moderate auotic stenous. Boom like a ton of bricks. He made appt with highly recommended Cardio in Philadelphia. I saw him last week and he said I was lucky in that my heart was strong in all areas except Bicupsid Aortic valve and he was calm but siad 100% it would need replaced in 5 to 10 years. Again I have no symptoms and work out 5 days a week. I get my heart rate up on cardio machine over 130 for 30 min and then high rep weights.

I am calm but worried OHS is a big deal of course. I have read all the threads and I know everyone is different but there are some guidleines. My aortic open is down to 1.1CM2 and avg gradient of 32mmHG. My blood pressure was high normal at his office he said I was nervous so he gave me home blood pressure test machine ( as loaner till I get my own)and Im averaging slight high normal of 125/82 Cardio said he would not expect to see sysptoms at 1.1cm2 and it should close at .1cm2 per year and at .8 or .6 I would see symptoms. I have a few questions for forumn. Cardio siad he will see me in 6 months and we will measure rate of closure and of course symptons. He said it could take 5 to 10 years but he thinks it will be 5 yrs. He said he tells people much worse and I should get mechanical and I should have normal life span. I am 50 and have seen much worse in my family and friends with cancer, car accidents, and other deaths, but OHS is big damn deal to me.

1. once I had visit with cardio I swear I felt dizzy and slight pain in chest next day. I got on threadmill for 30 min and ran at good pace and no symptons. In fact I felt better to blow off stress. Doctor said I could work out hard and I think I am just going crazy. I read on forumn how one person had symptons at 1.1 and another not till .6cm2. Should I be working out with a 1.1Cm2? Dr said go for it and keep taking of your self. Docotr said if I have been working out that hard and no symptoms and rest of heart looks good that I should just wait 5 to ten years.

2. It seems a lot of people talk about damage to heart as valve closes. Should I think about doing it sooner instead of health decaying till I have symptons and heart suffers damage?

3. It seems whatever valve mechanical or tissue a lot of people are back in at ten years.

4. I read different studies and it seems there is very high ten year mortality rate, but then I hear about other success stories. Can you get a mechanical at 50 and expect 25 years if lucky or is that average or rare?

Thanks for your inputs. Still getting over shock even though I have known for 30 years.
I really like this site and think it is great. I know everyone has an issue on this site and some are much more serious than mine but I would appreciate your feedback on the issues I raised in item 1 to 4.

Thanks

 

[dick0236]

Welcome
1. Probably mostly in your head. Follow your Cardios instructions and advice.
2. Obviously you want to correct the problem BEFORE serious damage is done to the heart. The heart will heal some damage after surgery. Surgery should be scheduled before MAJOR irreversible damage is done.
3. I do not believe this is accurate. I know little about the life of tissue valves, but mechanical valves can be expected to last much longer than 10 years.
4. This might be true for Seniors who have valve surgery at older ages. If you are otherwise healthy, I am confident you should get 25+ years out of a mechanical valve.

You are lucky that you had 30 years before needing the surgery. Mine was detected when I was a teenager and was replaced when I was a young man, age 31. Now 74+ and still going strong....on my first mechanical valve.

Stick around, this is the best place to get the support and opinions of many who have gone thru this.

 

[buncle]

Welcome to the forum.Take a deep breath it is all going to work out fine.I agree with all that Dick said.We all know that OHS is alot to "get your head around". But, you will and when the time comes you will have made the best decision for you.One step at a time-try not to get ahead of yourself mentally.Its going to be ok.

 

[Greg a]

WELCOME TO THE FAMILY OF OHS BROTHERS AND SISTERS ask lots of questions and soon you will find that the wait is the worst part

 

[ALCapshaw2]

Welcome Aboard GatorSurfer !

It would appear that your Doc's caught your condition Before it became severe.

Many Cardiologists and Surgeons use 0.8 sq cm as their "trigger" for recommending Aortic Valve Replacement so you are in the "wait and watch" stage. Good Surgeons will also consider your symptoms (especially shortness of breath with exertion and chamber enlargement) in deciding when to proceed with surgery. One of our 'Famous Sayings' is: "The Worse it Gets, the Faster it Gets Worse". This is especially true for Aortic Stenosis. Some of our members with Aortic Stenosis ended up needing AVR in one year instead of the 3 to 5 years their Cardiologists had predicted / suggested. Be sure to get another echocardiogram in no more than 1 year and sooner if your symptoms become more pronounced.

Aerobic Exercise at a HR of 130 bpm 'should' be safe. Lifting Heavy Weights is not recommended for valve patients because it can cause your Blood Pressure to get to high. High Reps with Lighter Weights is 'usually' OK as long as your BP is acceptable.

It is my (non-professional) understanding that the leading reason for explantation of mechanical valves is Pannus Tissue Growth which can impede the movement of the leaflets. The only mechanical valve that I am aware of that has a barrier to prevent / retard Pannus Tissue Growth are from On-X. ALL mechanical valves are designed to operate for several lifetimes so it is almost unheard of for them to 'wear out'.

Since you have BAV, it would be wise to be checked for signs of Connective Tissue Disorders (e.g. aneurysms) which are often associated with congenital BAV. The "Gold Standard" for checking for Aortic Aneurysms is either a Chest CT or MRI.

I always recommend that BAV patients find a Surgeon with experience recognizing and dealing with Connective Tissue Disorders so that they don't miss any clues and can fix whatever needs to be fixed the first time around. See the BAV and Connective Tissue Disorder Forum for LOTS more information on these often related conditions.

At this stage, Wait and Watch is the appropriate treatment plan.

'AL Capshaw'

 

[OldManEmu]

Welcome aboard.
You’re off to a good start with the Cardio saying your heart is still normal except for the valve.
You have also been put on a 6 month follow up regime so any changes that may prompt the need for surgery are picked up early before irreversible damage is done.
You also currently have no symptoms and have been cleared for exercise, so you can’t be too disappointed after 30 years.
The ten year survival figures can be daunting, however it must be remembered that most VR patients in the wider community are 70+ years at the time of surgery.
Just look at an actuarial table for this age group and it makes sobering reading VR or not.
Structural failures of mechanical valves are almost unheard of in the valves currently being manufactured, and have lasted 100+ years in simulated conditions, even tissue valves should last longer than 10 years in a 50+ year old.
Has your Aorta been checked to rule out an aneurism as these are very common in BAV patients?

 

[MarkG87]

GatorSurfer,

My situation is similar to you. I was only diagnosed 3 years ago in October with a bicuspid valve, at age 48, but stenosis was already showing on the valve. My cardio at the time told me that I would be 5 -10 years from surgery. During that time I sold a business, relocated to a different part of the country, and partially based my relocation on the fact that the city I ended up moving to had a hospital with a heart Center and I was only 1 hour away from some major cities with excellent health care. After my move, I established a new cardio and had testing done. Going back for my 1st followup he noticed some major changes in the pressure in the valve. Since I would be moving again in the next 3 months, he wanted to do foolowup again then, which was October. During my move, symptoms that I had been starting to have, shortness of breath, cold sweats, and "bad Color", began getting worse. At that time, he told me I should have surgery within 4-6 weeks. Needless to say, it was a big wakeup. Doing investigatin, I found that our local surgeons and hospital were very highly rated, at least as well as Vanderbilt in Nashville. Their thoroughness and gneneral feelings made me very comfortable in the decision to have the surgery here, and it was done 11/19. I chose a tissue valve. Desire not to be on coumidin and technical advances that show that there is a good chance that when this valve needs to be replaced, which my surgeon estimates @ 15 years, there is a good chance it can be done by a cath procedure. i had a mini-sternotomy, 4 inch incision, and other than a bout with a fever 10 days after surgery, all has gone very well. I am very happy with all of the choices I have made regarding this and I look forward to experiencing life without the shortness of breath and getting back into reasonably good shape.

Good luck to you in your research and remeber that the people in this forum are awesome with helping out in any questions you have.

 

[bdryer]

Hey gatorsurf

I'm a 35 year techy and still working full time in the field.

I'm 55, very athletic [I do tri sports daily and ski my you no what off] plus eat well. Athletic performance was declining but I had no idea I had a severe AV and ascending aorta condition. It's not often the Dr's call me a walking time bomb, but thats what they labeled me as.

My experiences and thoughts for your questions 1-4.

Had no idea I had a heart condition until I want for a medical to address a skin condition called granuloma annular. The skin condition will cure it's self but I flunked the ECG, so was sent to a cardiologist. I was diagnosed with an AV that only opens .6cm2 and an ascending aorta measuring 4.5 cms, on Oct 14/10 at age 55 [coming on 18]. It was way over 20 years since my last ECG. Had I kept up with an annual medical I would not be in such a severe condition and may have saved the ascending aorta. To answer question 2, me personally, I'd get it done you are bordering on critical. Fortunately the Doc's are monitoring you and will pull the trigger on the surgery. You don't want the constant worry of the impending procedure. The heart will repair it's self once the free flow of blood starts happening. You want to protect your ascending aorta. You already know the condition continually degrades

More about question 2. Think of this my aviation brother, as px < vel > as the nozzle dia converges. Your AV should be 2.5 cm2 and you are 1.1 cm2. Hence the blood is exiting the reduced dia [convergent] nozzle of the AV at a higher vel and lower px stressing your ascending aorta. This is what happened to me. That high vel jet is causing dilation of the ascending aorta and a possible dissection. The surgeon was kind enough to point this out BUT, the good news is, I get a fantastic dacron graft and will be good as new. It ain't OEM but it is just as good if not better! So you know, the surgeon recommended a MHV with the aorta graft. This beauty will either be a St. Jude Regent or an On-X.

Regarding question 1. I was required to to a stress test as part of the exam. The stress test injured my heart and now constantly reminds of my curable condition. I went back to the cardiologist to question my nagging new reminder of a crappy AV and ascending aorta. I even developed arrhythmia, hence the surgeon has placed me on beta blockers to get me through to my Jan surgery. Found out the tech running the stress test [from hell] took me to 170 BPM and held me their. I was stubborn enough to treat the exam as a competition. The tech commented that It was like I had a second heart beat. Jeeze like what more indication do you need to stop the test. It's kind of like you get an engine fire and don't bother to "T" handle it. The cardiologist said, "yup the constant pain is normal from the stress test but will abate after the surgery". He also said the heart will atrophy to normal dimensions. The skin condition driving the medical saved me. I'm taking it as a sign from God which saved my life.

About question 3. I was told by the St. Jude rep that poor management of warfarin and a lazy life style causes pannus [scar tissue] build up on a MHV. From what I gather, this is the #1 cause or a repeat surgery for a failed MHV. On-X and the St. Jude Regent are designed to inhibit pannus. To hold back the pannus, this is a secondary function of the pivot arms of the Regent, On-X has a flair the nozzle inlet duct. As for biological, they are prone to calcification driving an inevitable repeat surgery at age 50. Their is fantastic future technology for biological valves, but it's to far out there for me and possibly you. Check out the valveXchange web site.

As for question 4. The vast majority of age 50 MHV recipients should take the initial implant to the grave, especially with current technology! I'm banking on it at age 55.

I'm no Doctor, these are my experiences and education with our curable get your life back problem.

I'm hating the waiting and walking on eggs temporary life style. Can't wait to be on display in the OR for the overhaul.

Welcome aboard and good luck.

 

[Mentu]

Gatorsurfer, I was 50 in 2000 when my stenosis was discovered and went 9 years before surgery but my valve area at 1.6 cm2 was larger than your's. In November, 2008, my valve area was measured at 1.25 cm2, however, it dropped to 0.7 cm2 by July, 2009 so you do not want to miss those 6 month checks. It seems that when it begins to change the change accellerates. I began having some clear symptoms by last summer but it was still a shock to learn that it was time for the valve replacement. My feeling is that one should go for surgery as soon as the numbers start changing more quickly. The idea that many cardiologists have is that one should wait for symptoms to appear but I see no benefit in that. Stenosis does not improve...it only gets worse. There is no prize given to those who wait for symptoms and then find themselves feeling more and more ill week by week. Because I was still in reasonably good health, recovering from surgery was really not that big a deal. It is necessary to pace one's recovery but it goes pretty fast.

If you have been reading this site, you will have realized that a lot of digital ink has been spilled discussing which valve is best. The one you choose is best. This is one of the things that you will decide with your surgeon but it really helps to be well informed so that you can keep up your side of the conversation. The studies that have been done to date seem to indicate that which type of valve you choose does not alter your life expectancy. They do, however, show that valve replacement done before the heart is seriously damaged allows one to live a normal life with a normal life span. I'm glad that Dick posted a note to you since he is living proof of the benefits of AVR. Plainly put, most people who have a valve replacement will die of something else. The first survivor of valve replacement, Mr Amundson, died 15 years later when he fell off a ladder.

So, keep your appointments, learn to read the test results so that you can follow the progress of your stenosis, and stay informed so that when the day arrives that you need to speak with a surgeon you can do so knowledgably. In the mean time, this a good place to share experiences, ask questions or rant when necessary. Take care.

Larry

 

[jjay32]

Welcome to the forum! All the advice is good. I went from a 1.7cm opening to 1.2cm in a year, so I am being watched. It seems between your cardio and this fourm you are in good hands. At this point in life you and I are both in the waiting room. Continue to ask us questions and we will be glad to help in any way.

 

[john79t]

Hey another military guy here. At 18 on a high school football physical the doc thought he might have heard a click. Nothing on followup. Played football in HS and college. Joined the Army Infantry officer. got out went back in and finished a career. At 40 I was told I had a bi aortic valve (Thanks dad he had one also) I was cleared for PT and was a runner and full PT til 55. At 60 the mild AS was sever. Got new valve in 09 at 61. New hip in Jan 10. Feel great, valve is perfect BP 110/65. If you are healthy when you need the valve your chance of death is as near 0 as possible.

 

[tprice54]

Welcome! I was able to run up until a month or so before surgery. In fact, it was when I couldn't run a mile that I knew it was time for surgery (just like my cardio said would happen). It most likely will not be a linear deterioration, it seems to go in jumps.

 

[ALCapshaw2]

Gatorsurfer, I was 50 in 2000 when my stenosis was discovered and went 9 years before surgery but my valve area at 1.6 cm2 was larger than your's. In November, 2008, my valve area was measured at 1.25 cm2, however, it dropped to 0.7 cm2 by July, 2009 so you do not want to miss those 6 month checks. It seems that when it begins to change the change accellerates. I began having some clear symptoms by last summer but it was still a shock to learn that it was time for the valve replacement. My feeling is that one should go for surgery as soon as the numbers start changing more quickly. The idea that many cardiologists have is that one should wait for symptoms to appear but I see no benefit in that. Stenosis does not improve...it only gets worse. There is no prize given to those who wait for symptoms and then find themselves feeling more and more ill week by week. Because I was still in reasonably good health, recovering from surgery was really not that big a deal. It is necessary to pace one's recovery but it goes pretty fast.

If you have been reading this site, you will have realized that a lot of digital ink has been spilled discussing which valve is best. The one you choose is best. This is one of the things that you will decide with your surgeon but it really helps to be well informed so that you can keep up your side of the conversation. The studies that have been done to date seem to indicate that which type of valve you choose does not alter your life expectancy. They do, however, show that valve replacement done before the heart is seriously damaged allows one to live a normal life with a normal life span. I'm glad that Dick posted a note to you since he is living proof of the benefits of AVR. Plainly put, most people who have a valve replacement will die of something else. The first survivor of valve replacement, Mr Amundson, died 15 years later when he fell off a ladder.

So, keep your appointments, learn to read the test results so that you can follow the progress of your stenosis, and stay informed so that when the day arrives that you need to speak with a surgeon you can do so knowledgably. In the mean time, this a good place to share experiences, ask questions or rant when necessary. Take care.

Larry

Well Said Larry !

Thanks for sharing your experience.

I agree that "Sooner is Better", especially for patients with Aortic Stenosis which only gets worse with time. To my mind, symptoms are a sign that DAMAGE is being done to the Heart. What is the benefit it waiting for THAT?

'AL Capshaw'

 

[Superbob]

Welcome to the forum, gatorsurfer -- glad to have you with us. My journey may be relevant:

An internist was the first to detect my murmur when I was in my 20s. He spoke of aortic regurgitation and said eventually I might have to have a valve replacement. Over the years, I pretty much forgot about that, or didn't think about it much. I got into running in my 40s, even completed a few marathons. Played industrial league softball.

Late in my career I took a stressful job in DC battling the Beltway commute. Finally, when I was in my 60s, still with no clear symptoms (except perhaps being a little more winded coming up the basement stairs, something I attributed to getting older), a cardiologist in Northern Virginia did an echo and found pronounced valve leakage and aortic root enlargement.

It didn't sink in with me then that I was BAV, but I was, which means I had a congenital condition all that time. It sure sunk in with me that I would have to have complicated-sounding valve-and-root replacement surgery. He recommended a surgeon whom he said was one of the best anywhere doing this procedure, I had the surgery at age 63, and it went well, and he was right about the surgeon -- superb. I am coming up on 6 years post-surgery in February.

Anyway, you can go a long time without symptoms and in fact sometimes symptoms never show up. It is hugely to your advantage that you are in very good shape as you approach the time you may need this work done. Definitely you should have it done before damage occurs, in consultation with your doctors. I chose tissue partly because of my age -- seniors' bodies eat them up less rapidly, and it might be the only one I will ever need. The longevity of mechanical models is a plus. You'll need to do your research, weigh the pros and cons of each type, and make the best choice for yourself.

You are right that OHS is no small deal. But it is doable, with a very high success rate. There are folks who go back into vigorous sports, such as running. Myself, I'm sticking mostly to two lengthy daily walks of my dog, but any limits are more a matter of my knee and back problems than my mended heart.

Anyway, glad to have you with us, and look forward to your continued posts, gatorsurfer.

 

[Lynlw]

Welcome, One good thing you have going is you live in a city that has some realy great hospitals, we live in Nj now, but still basically a philly suburb and Justin (my 22 year old son) has had most of his heart surgeries in philly..CHOP but most of his doctors practice at CHOP and HUP.
As others have said, chances are you will live a long happy life even after you have your surgery, no matter what kind of valve you choose. Luckily you have plently of time to learn about valves and surgery ect and don't have to make any definate decisions until you do need surgery. Since you may need surgery in 5-10 years, there is alot of exciting things happening in valve replacement surgery, so who knows what will look like YOUR best choice by the time you need surgery. I would certainly research all the choices and the pluses and minuses of each, NOW incase your heart does get worse sooner than they expect and you need to make a decision with out much notice, but keep up on what's going on and make lists of any questions you want to ask your doctors. FWIW as far as valve choice, many people find that surgeons might have different suggestions than cardiologist do, not only about When to operate, but what kind of valve they recomend.

 

[Lily]

...1. once I had visit with cardio I swear I felt dizzy and slight pain in chest next day. I got on threadmill for 30 min and ran at good pace and no symptons. In fact I felt better to blow off stress. Doctor said I could work out hard and I think I am just going crazy. I read on forumn how one person had symptons at 1.1 and another not till .6cm2. Should I be working out with a 1.1Cm2? Dr said go for it and keep taking of your self. Docotr said if I have been working out that hard and no symptoms and rest of heart looks good that I should just wait 5 to ten years.

2. It seems a lot of people talk about damage to heart as valve closes. Should I think about doing it sooner instead of health decaying till I have symptons and heart suffers damage?

3. It seems whatever valve mechanical or tissue a lot of people are back in at ten years.

4. I read different studies and it seems there is very high ten year mortality rate, but then I hear about other success stories. Can you get a mechanical at 50 and expect 25 years if lucky or is that average or rare?

...I would appreciate your feedback on the issues I raised in item 1 to 4.

Thanks

Welcome to the site

Some scattered thoughts, opinion, and personal experience for you: It seems, for a lot of us, that as our bicuspid valve began to go south, its decline accelerated. Several of us here have discussed that we thought we just weren't aging very well, not realizing we were suffering issues related to the deteriorating function of whatever bad valve(s) we had. I was having some pains (in my shoulders and up my neck) upon exertion a few months before my valve needed replaced and at the time I didn't realize it was angina. I developed other symptoms also.

As the valves go bad, they can contribute to LV hypertrophy and other damage; but for many of us our hearts recovered a great deal as they remodeled, even months after the surgery. Pre-op, my mitral valve began malfunctioning also; but after my bicuspid valve was replaced, the mitral was able to work better so happily it didn't need work also. I do still have some residual mild pulmonary hypertension though so have to take some o2 a little sooner than my husband does when we fly.

It seems that consulting with an excellent surgeon (or two or three for further consults) sooner rather than later isn't a bad idea because experienced surgeons seem to like to time the replacement at the right time, before worse damage occurs; and some cardios seem to like to address various symptoms with medications, putting off the surgery while further damage can occur.

Your expressions seemed to me to indicate a pretty good knowledge of what you will expect. Best wishes to you. Post again and take care

 

[gatorsurfer]

Hello and thanks for the replies

I ahve another question as I read all the threads I see alot of talk on expadning aorta stems? and anuersysms ( sp?)

My question is in meeting with cardio and he said 1.1.cm2 biscuspsid aorta cardio said keep exercising and see me in six months he siad no other problems did echo give him enough info to check out the issues of anurysms and expanding aorta he said I was lucky in no heart disease and he did not expect to see symptoms at 1.1.cm2 and good health i have no symptoms but is echo enough for himto know? I see all these other test that are gold stnadard to ck out whole heart. He also said, when I ask about dropping dead and he siad no I had no real risk as everything else looked good and to keep working out hard. is echo enough?

 

[ALCapshaw2]

An echo can visualize the heart and valves but from what I understand, it is not able to visualize the entire Aorta for signs of aneurysms. As I mentioned in my earlier response, a Chest CT or MRI are the "Gold Standards" for checking for aneurysms (which have a moderately high correlation with congenital BAV).

You should be safe doing aerobic exercise. It would be wise to avoid Heavy Weight lifting. High reps with lower weights 'should be' OK (assuming your Doc say it's OK).

'AL Capshaw'

 

[Ras1151]

Your aortic valve area is 1.1 cm2 and you are able to exercise.

My aortic valve area is also 1.1 cm2, but I am unable to exercise. If I try to start running almost immediately my chest will tighten up, I get out of breath, and am forced to stop and rest.

My surgery is schedued for two weeks from today. I don't really know the what the difference is. After the cardio did the coronary angiography, they said surgery was next step.

Ron

 

[hansong]

Good questions; it's too bad there are no definitive answers to them.

My AVR was a Christmas surprise last year, with only a few days elapsing between diagnosis and surgery, and I'm still working on getting my medical back and returning to work. The longevity of the valve is a matter of extreme interest to me, but there's no point in dwelling on it since there's nothing I can do about it other than maintain my health and fitness to the best of my ability. I think my history of good physical fitness from childhood on was a big advantage, both in mitigating the effects of the deterioration of the valve over the years, and recovery after surgery. It sounds like your situation is similar.

Yeah, heart surgery is a big deal. You're lucky that you have the opportunity to address the problem before it addresses you. In my case, I didn't know about the situation -- other than a cryptic comment by a Navy doc when I was young -- so I didn't have to worry about it, but dodging the bullet as closely as I did isn't all that desirable either.

The surgery isn't fun, but with luck it's not that bad. My surgery was on a Tuesday afternoon and I was discharged Friday afternoon. Couldn't wait to get out of the hospital and back home. Started walking outside a week later. Very slow, very light exercise, but at least I was moving under my own power. Cheated on lifting restrictions, but I think my surgeon sensed I was going to be a bad patient and wired me up extra tight. Yes, there's the potential for problems, which are recorded here in abundance. I certainly don't know if my experience is typical. But my guess is people with problems are more likely to post here than those whose experience is less eventful.

Bear in mind at least part of my brave talk is predicated on the hope that by the time I need a replacement, they'll have come up with something that can be installed in an office visit. Of course, if obamacare isn't repealed, the death panels will give us the chop anyway; they won't be spending any money on geezers.

Good luck on your decision and best wishes for the future.