Asymptomatic but just given the bad news...

[Mike From Michigan]

I was just told last week that it may be time for the aortic valve replacement surgery. I am 43, work out a lot (but know my limits because of the AS) and am in very good shape. I was 1st told of my AS when I was 21.

I just had a battery of tests done and went the full 15 minutes on the treadmill stress test without any symptoms (which surprised the doctor and technician). However, my echo results were not as good. My pressure gradient was about 50 mm Hg and my valve area was about 1.0 sq. cm; both of those are on the cusp of calling my condition severe according to the cardiologist. About the only time I feel any symptoms at all are when I do any impromptu physical activity without any warm-up - the most recent was playing with my kids outside. Hence, he recommended that I start consulting with some surgeons...

I am now a little scared of course but also wondering if I should wait until I at least get some symptoms or go ahead and get it done now. The Dr. said it was up to me at this point since I am in a gray area. I have no idea what to do - he also said if I do talk with a surgeon they will more than likely recommend surgery.

Also, I am of course wondering what valve choice would be the best choice since I am a pretty active person - I coach a lot of kid's sports.

Any help I can get on this will be appreciated. I "almost" wish I had more definitive symptoms to make me feel like it is indeed the time to be cut open...

Thanks,

Mike T.

 

[ccrawford]

Hi Michigan Mike - Welcome to VR.com. You have definately come to the right place. There are about 800 members here who have all been there and done that, and can give you insight on just about any aspect of what lies ahead for you. Based on your test results, I'd say you have a little time before surgery is due unless there are other mitigating factors I don't know about. That's good because it gives you plenty of time to read all the threads here including the older ones that you'll have to dig out. It will also give you time to figure out what if anything you are really anxious about and let the gang work on you to resolve it. I was pretty anxious about the breathing tube, and I got a lot of help to get me thru it ok. Turns out it was a no issue, but most of those things are. Browse the posts for awhile and ask your questions - we'll be here to answer them. Chris

 

[Nancy]

Hi Mike-

Welcome to the site.I think most here will agree that NO you shouldn't wait until you get symptoms. Your test results say it all.

Many people do not get symptoms as their heart enlarges and accommodates the extra load that your condition is placing on it. When it cannot accommodate the load anymore, then you might have permanent enlargement of the heart muscle. If you go before that time comes, you have a good chance that your heart will eventually return to a more normal size.

It's wonderful that you are in such good shape. That will mean a lot as you get into recovery mode.

There is a ton of information and support here. We'll help you get over the stressful time Pre-Surgery.

Best wishes.

 

[bvdr]

Welcome Mike,

We have another member from Shelby township too!

You may as well plan on spending time with us on this forum since that is where you will find yourself again and again.

Just about every thing that can happen to valves has happened to someone here on this board. One thing that most of us agree on is get your heart fixed before there is permament damage. I am glad that your cardiologist is looking out for your best interest there.

You will find a wealth of information about valve selection in the forum of the same name. Change the command at the bottom of the page to view posts that are further in the past. There are some very good discussions about the pros and cons of mechanical vs. bioprosthetic.

Ask anything you care to. Vent when you feel the need, We have been there and truly understand.

 

[xtremlee]

Hi Mike
Im like you not alot of systems but my dr suggest surgery now
while Im am still in good health. I also coach alot of youth sports all of them to be exact. I am now taking baseball season off so I can get this done. I dont want to but I guess I have to. I just read today on www.webmd.com that someone who has severe regurgatation only has a 2 to 3 or 4 year life expectancy without surgery. That really got my attention. I have read alot and the people here are of a great help to me and they will be to you also.
Im only 33 just a little younger than. My dr also told me I could have surgery now or a heart transplant later so I think I choose the first one. After reading my post over it really dosnt sound good. It sounds like Im trying to scare someone including myself but Im not just giving you my situation. Good Luck and God Bless you.
Lee

 

[Granbonny]

Hi Mike

Hi Mike

Welcome to our wonderful site. Do as the others have said..read, read, read..all the threads.. If you have children..think about having it done this summer when they are out of school..and Grandparents, other relatives, friends can take care of them...Your wife will want to be with you.. the week you are in hospital and weeks after..she will need to be with you. And the kids can be with others. Also, the weather will be better. You will want to get outside and walk a lot. Helps get the nasty drugs out of you. ....You will be fine..Just have a lot to ponder before hand..Choice of valve, time off from work....Keep in touch. Bonnie

 

[punkin32180]

Mike, I would agree with everyone else, I think its time u got the surgery, you dont want to wait too long and damage your heart, get its while its strong. I was like u and didnt have hardly any symptoms. Just a little shortness of breath while working out and that was about it. I did the full 15 on the treadmill during the stress test too. But my surgeon convinced that it was time to have the surgery or I could experience a stroke or heart attack and I am 23 years old and I did not want to go through that. I had the surgery on Feb 26th and was out 4 days later and here I am almost good as new now with no regrets at all. I too coach sports so I know how that is. But now that I am on the road to a healthy heart, I will be able to fully enjoy the whole aspect of coaching. I hope you make the right decision. Good LUck!!!

Jaque

 

[Raverlaw]

Mike,

I think you will find from others here who suffered from AS that it progresses quickly. While you are on the cusp now, it is better to start planning for your surgery. Get things done; get any medical tests or dental work you need done. Talk with one or more heart surgeons and ask for recommendations. Read the archives in the Valve Selection forum here. There's lots of discussion for both natural tissue and mechanical valves, which I won't take time to discuss here.

I think most of us here will agree that the danger of permanent damage to the heart by waiting, coupled with the fact that you are young, strong and a good surgical candidate NOW means that you should consider scheduling surgery within the next year if all all possible. Even though you don't feel symptomatic, you will feel BETTER when your valve is *fixed*, as it is dragging you down right this minute. You don't feel symptomatic because it's snuck up on you gradually.

Welcome to VR, by the way. This group is GREAT and really helped me come to terms with my surgery, get educated and knowledgeable. They're also like family when it comes to loving (sometimes TOUGH love) support.

Keep in touch and let us know how you're doing. You will find people here who like to discuss and debate everything - from your personal avatar to woodpeckers. Or maybe I should have said from aortic stenosis to warfarin.

 

[ALCapshaw2]

WHEN to operate

WHEN to operate

Mike,

Read this post from ScottVant about how he went from a 'healthy' athlete to having an enlarged heart in SIX WEEKS...

'AL'

*so* *irritated!*

So, not to keep harping on this or anything, but: To anyone busting their head about when to operate/not to operate/operate before the holidays/wait until spring/I get a new job/the kid gets a little older/I retire or WHATEVER...

To briefly recap my situation for those who don't know--about a year ago I started to get sick. Day after Thanksgiving, diagnosis is bicuspid aortic valve (until then, undiagnosed) with 4+ regurg and active endocarditis. Previous history--no heart trouble, active bodybuilder with weekend forays into long bike rides and skydiving. Healthy resting pulse, 100% asymptomatic--no breathlessness, no swelling, absolutely no indication of heart trouble whatsoever. Doctor assumes my BAV was either not leaking or only VERY MILDLY stenotic, if at all.

In other words, valve was leaking for at most, 6 weeks, as far as they can tell... Granted, quite severely by the time of my operation, but still.

WHAT I'M SO IRRITATED about :

Met again this week with cardiologist. Two months post-op, he finally tells me about my enlarged LV/LVH/whatever. At that Two-month mark, he says, "no weightlifting for six months, ride your bike all you want, go ahead and train for that 585-mile AIDS Ride next summer. Four months post-op, I go on Coreg, cos pulse rate is not going down on as a result of monitored cardiac rehab alone. Most recent consult (yesterday, ~10 months post-op), word is--nix on weightlifting of any kind until directed otherwise, nix on the 585-mile bike ride until Summer 2005 (if at all), pretty much moderate exercise only until directed otherwise.

In other words, heart conditions developed during those SIX WEEKS (only!) of leaking are, at the moment, showing less-than-encouraging signs of regressing, if at all. The road to Wellville is a long one, apparently.

I do realize of course that there are people with tougher rows to hoe than me and with more conditions to overcome and any number of complications I could be considering but am not. I guess I'm having a real problem dealing with the fact that a year ago, I was a perfectly healthy 34 year old athlete and now, I'm a heart patient on blood pressure pills, told really not to go back to the gym (I mentioned I might not be able to resist the siren call of the weight room if I went back to a gym to do cardio workouts and it was suggested I work out at home instead--a depressing, make-me-feel-like-an-invalid suggestion if ever there was one...)

Oooh, yuck. That sounded like a pity party. Not intentional. But what the hell--I wrote it, I'll leave it.

My point being, in hindsight, if I'd have had even a few weeks of notice what was going on, I'd have gone under the knife at the first sign of trouble and spared myself what looks like is going to be a nice, long, slow recovery, nursing a damaged heart muscle back to health.

Scott, be careful people--it's a jungle [in] there.

(PS--is a dilated aortic root different than an aortic aneurism? My aortic root is 4.3--that sounds bad... Is it?)


__________________
Ross Procedure, 12/16/02
Cedars-Sinai Medical Center, Dr. Alfredo Trento
Los Angeles, CA

Do you still want to WAIT for SYMPTOMS ?

'AL'

 

[Rich]

Hi Mike,
You have come to the right place.
As someone mentioned I am also from Shelby Twp.
I sent you an e-mail to let you know I'm right here if I can be of any help.
If you ever want to get together and discuss it just let me know.
There are a lot of people on this board who can really help you make those informed decisions.

Rich

 

[ar bee]

spot on Mike

spot on Mike

Hi Mike

although my conditions is somewhat different (severe AR) i am EXACTLY in the same situation as you!! No symptoms what soever, the measurments all point to a borderline case, and the surgeon (and the cardiologist) tell me to have a go for AVR. Three month ago i was still in state of denial (let's wait until the measurements move...), but I am getting closer to the belief that better do it while everything else is OK and I can recover quickly.

there are people who climb mc kinley with an artificial valve...

all the best
ar bee

 

[ar bee]

valve choice

valve choice

Hi Mike

sorry forgot the 'valve choice' part of my answer. I am 39, I'll go for a mechanical (despite the coumadin and a few other issues - partucularly the possible clicking sound!!!).

I see the adv of bio-proth, but lets do the math: both of us have an expected life span of app another 35-40 years (yes i am an optimist), which easily means another 3-4 rounds under the chain saw, I am not sure if I want to have that with all the re-hab, etc etc. you could of course argue that surgical technique will advance (microinvasive etc), and sure this will happen, but we do not know at what pace, right!!

ar bee

 

[bethanne]

Hi Mike,
It is understandable that you are not looking forward to surgery. I wouldn't be surprised if you aren't actually having more symptoms than you realize. Many of us have dismissed symptoms of fatigue, weight gain, and other symptoms as to getting older, etc.

You may or maynot be having these or other symptoms, but my point is there is a tendency to ignore them until they become very blatant. For me it was my feet swelling.

It does sound like you have a good doctor who is recognised "new symptoms" thus he initiated the tests. I would encourage you to consult with a surgeon before you make a decision. One thing you will discover if you browse the forum is that fairly often the surgeon has commented to the patient that their valve was in worse condition than they had predicted prior to surgery. Surgeons get a first hand look at what is going on and have an experience rating of candidates that have an easier time of recovery, etc.

Try to learn as much as you can before your appointment you will feel more confident in your surgeon and will be able to ask more direct questions.

Keep us posted.

 

[RayinSF]

~Hey Mike,


I also have the same story. 35 yrs. old no syptoms what so ever, but will be having surgery in a few months. At first I thought it was too soon, but then I came to my senses and realized that the doctors know best. I can tell you that once it became offical, and a date was set, I felt a HUGE sense of relief. I really cant wait to get it done and get back to normal, knowing this little "problem" has finally been taken care of. I can also tell you that everyone here have been so cool, and I dont think there is a question you could ask that someone can't give you an honest answer for.

~Ray

Aortic Stenosis
T- 106 and counting
July 1st 2004
UCSF
Dr. Scot Merrick

 

[LoriSue]

HI Mike, welcome to the site. I am glad you found us. I think everyone has summed it up pretty well so far......read, read, read.......ask us questions........seek information. These things will help you feel more comfortable with what needs to be done. The people here are extremely supportive and very willing to share their first hand experiences. This is a wonderful place to find out about things that you may want to ask your doctor about but had never thought of before. Keep us posted and feel free to ask anything you have a question about.

Take Care,
Lori

 

[SJJ]

Mike,
Just as a follow up about asking questions, at VR.com you'll get answers from several people which broadens your perspective and provides you with a wealth of information. You would likely never run into this many valve replacement folks to ask questions of in any other way. And as to the support, it just doesn't get any better than what you'll find here and we all hope you keep posting and keep connected. Welcome!Sue

 

[JimL]

Hi Mike, I'm a little farther away than Rich, but not much farther. I had my surgery done in Flint a few years ago, and I very definitely had the symptoms. Believe me, you don't want the symptoms. I figure I might have lasted another two weeks without surgery. I could ONLY breathe sitting up and leaning forward a little, and even then I could never catch my breath all the way. That applies to sleeping at night as well; laying down to sleep was an impossibility.

 

[Gemma]

Hi Mike,
Sue's right - the number of people here at VR.com in the same boat as you is incredible! My boyfriend Jim (aortic regurgitation - AVR 3 months ago) obviously met a few fellow valve replacement patients in hospital, but since then, the only one we've met is a lady in her 70s at his rehab group. Oh, and someone who sold him a motorbike (no idea how it just "came up" in conversation but there we go )
And yes, operating before symptoms get too bad is the best plan - Jim used to tire easily and had chest pain at night AFTER exertion, but was otherwise asymtomatic apart from his huge heart! Now it's back to normal size. The surgeon said if he waited 5 years he'd have trouble even getting up a flight of stairs, and his heart would be irreversibly damaged.
Ask away - no question's silly, if it's worrying you it needs to be asked.
Gemma.

 

[JimL]

Hi Mike,

What was the worst part (besides the waiting)? From what I hear, the waiting is the worst. I didn't have much time for any of it to sink in ahead of time.

What part was not as bad as you feared? The whole pain thing was well managed. I had no pain at all, except for two times: (1) sitting up the evening after surgery, and (2) the removal of the catheter. If I had it to do over, I'd take a healthy dose of painkiller before those two things.

How long did it take after surgery for you to feel somewhat normal again (little or no pain). Recovery is gradual and it all depends on how you measure it. I shocked myself by running up stairs not quite a year after surgery. We had gone up to the AuSable, and there are steps down to the river, 200 steps?

Is the catherization test (don't know technical term) prior to surgery really painful? No.

If you had to do it over again you would ...... Never want to do it over again.

Hope this helps.

 

[Lisa]

Hello, Mike. Take care of it. It is very scary and it's all you will think about for a while...but don't let your symptoms progress. I waited a little too long and now I'm kicking myself for not doing it sooner. My valve area is critical and I'm having OHS Friday, March 19. I'm lucky in that my heart is not enlarged, but I only have one leaflet working and my valve is extremely tight. It doesn't take much to get short of breath. You don't want to wait until you start feeling bad to do something about it. Search through the posts here and you'll find plenty of diff. stories and circumstances but most with a common thread....advocates of sooner rather than later! Good luck!