What to choose

[spartan44]

Hi all,

Im a 35 year old male that lives in Maryland. I have a aortic valve leak and have known about for 14 years. Well, it appears the time has come or coming closer to replacement. I have two cariodlogists and a surgeon that feel its time and one surgeon up at Johns Hopkins that feels I can wait. I decided to let the Cleveland Clinic be the tie breaker and will be going up there in a few weeks for tests and if they feel Im ready, I am choosing to have the replacement done there.
I m still unsure what valve to choose. Both surgeons have said the mechanical is the way to go, but they also said they would never go on Coumadin, Very nice!!
The homograft sounds great, but then I see another surgery probably by the time Im fifty.
Is Coumadin as bad as it sounds?
I want to stay as active as I can.
Thanks for your support
Dale

[ALCapshaw2]

It's good that you are going to the Cleveland Clinic. Their 'valve of choice' is the Bovine Pericardial Tissue valve which I have described several times here on VR.com (see the archives). That was my first choice but unfortunately, my surgeon decided to use a St. Jude mechanical valve after seeing inside.

I've not had any problems living with Coumadin BUT, it does make further surgeries and / or invasive procedures more complicated because you will have to be weened off Coumadin and put on either Lasix or Heparin before and after other invasive procedures. Not fun, but not the end of the world.

Please read through the Coumadin Forum and Valve Selection Forum from a LOT more information on the subject. Also look up the thread "Making the Choice" under the HeartTalk Forum.

'AL'

[Nancy]

Hi Dale-

Welcome to this wonderful site. Decisions, decisions, decisions--right?

These are tough ones.

Basically what you have to choose from is a mechanical valve which most probably would give you long, long service, or a tissue valve which would have to be replaced at some time, when it started to deteriorate, but would not require Coumadin, in most cases. And I say, in most cases, because there are some folks who have had to go on Coumadin even with tissue valves for one reason or another. Some of that has been temporary, and some long term.

There are also some new cutting edge valves out there which some of our members have.

You really have to do some heavy thinking about how you want to hancle it.

I can say that my husband has been on Coumadin for 25 years, and I have no idea how it got such a bad rap. You would have to have regular testing, but after a while, this becomes routine.

When younger, my husband was very active, and didn't miss too many opportunities in life. He's 72 years old now and has mellowed. He still has an old mechanical aortic valve he had implanted 25 years ago. He also has a mechanical mitral and had a repair on the mitral.

There is volumes of information on this site regarding valve selection. Take some time and go through as many threads here as possible. You will learn so much.

Best wishes to you. Please post often with lots of questions. You'll get honest answers from those who have walked the walk.

[spartan44]

Thanks for the support. I guess Im still in denial about the whole thing since I am asymptomatic. I lift weights and run and just feel fine.
If I was symptomatic I would feel much more comfortable moving foward.

[spartan44]

Al,
Can you tell me who your surgeon up at CCF was? Bruce Lytle will be performing mine if it is decided I need to have it now.
Dale

[JimL]

"If I was symptomatic I would feel much more comfortable moving foward." That's certainly evidence that you're not symptomatic, because if you were symptomatic, you would not be comfortable, not at all. Not being able to catch your breath is not comfortable, and it would be good to avoid that.

I just had some cysts removed while I stayed on coumadin, without any problems. It did take a while to find a surgeon who would do it that way.

Whatever decision you make about the kind of valve to get is the right decision. Even better would be to stay asymptomatic, but that may not be possible.

[Creed3]

Hi Dale,
I can completely understand your situation. I was also asymptomatic and very active. It was so hard to believe that anything was really wrong. I kept thinking they had to be making a mistake. To make a long story short, I went to 3 different cardios before I found one that found out exactly what was going on. He sent me to CCF straight from Philadelphia, and I had surgery right away to repair a dissection/anuerysm of the aorta along with a mechanical valve in the aortic position. You can read my story in the story section. I had the surgery 9 months ago. I had done a lot of research before the surgery knowing I would have a valve replacement at some point in the years to come and I had decided on a mechanical because I didn't want to have surgery again, if at all possible. When I went to CCF, my cardio and surgeon there both felt that a mechanical valve would be the best choice if they were not able to repair the valve. A repair couldn't be done on the valve, so I was given a mechanical St. Jude. My lifestyle really hasn't changed, I find coumadin to be a non-issue. Whatever your decision is, just know that there is no right or wrong decision regarding valve type. It is a very personal and individual decision. Whatever decision you make will be a good one, and the right one for you. Just do as much research as you can and ask your cardio and surgeon a lot of questions. They should also be able to help you with the decision. Another thing to remember is that you may choose one type of valve, but once the surgeon get in there and looks around, that type of valve may not work the best and they may have to go with a different valve. Just something you should know.

Good Luck and Take Care!
Gail

P. S.
I also wanted to let you know that my CCF cardio was Dr. Rodriguez and my surgeon was Dr. Svensson. Dr. Svensson is very very good at what he does. He is one of the best in the world. People come from all over the world to have him do their surgeries. He specializes in aortic problems.

[Gerry Dorrian]

Dale
I was diagnosed in March and at 49 was pretty much asymtomatic but things changed in a hurry. My cadiologist had assured me that it was OK to take on a building a house and that surgery was a year or more away but a week and a half into the project I ended up in the ER. Too much heavy work with the upper body I guess. After this I had pronounced symtoms and became short of breath with very little exersion. I could feel myself getting weaker almost by the day. The cardio surgeon told me that if I didn't have surgery within 2 months my heart would be permenantly impacted.
My experience was that even if you feel pretty good now that can change very quickly. If you are in pretty good shape other than your heart your body will try to compensate but the heart is still being stressed.
I'm glad that you are better prepared for this than I was. It sounds like you are in a good position to act when you are ready and that you are considering all of you options.

Good Luck,
Gerry

[spartan44]

All,
Thanks for the responses. I have about three weeks left before I go to the CCF, so I'm doing all kinds of research.

[ALCapshaw2]

Hello Dale,

I need to make a clarification, I did NOT have my AVR surgery at CCF, but here in Alabama. I just happen to know that CCF has a high regard for the Bovine Valve (my previous bypass surgeon did his residency at CCF).

I also want to caution you to NOT overwork your heart at this stage because PERMANENT DAMAGE or SUDDEN DEATH are both realistic possibilities.

IF your aortic vavle is closing over, the heart can compensate by pumping harder. This leads to building up the heart muscle and thickening the heart walls. If this goes on too long, there can be PERMANENT DAMAGE to your heart muscle. I suspect this may have happened to me which resulted in fluid retention (that's another long story) which will definitely limit your exercise tolerance. The 'solution' is to be on Diuretics (and potassium supplements) for the REST of your Life. GET THE PICTURE?

Waiting too long for surgery and / or overstressing your heart when you have valve disease is NOT WISE. Sorry for being so blunt. Note that Cardiologists like to postpone surgery as long as possible and use medical treatment (ACE Inhibitors) to reduce internal blood pressure. Surgeons like to see their patients BEFORE Permanent Damage is done to the Heart Muscle.

Deciding on the optimum timing for surgery requires frequent monitoring (Echo and / or TEE exams). After my experience and rapid decline in the last 2 months before my surgery, I tend to support the Surgeon's philosophy that "Earlier is BETTER".

Hopefully I've given you some ideas for Questions to ask when you get to CCF. Good Luck in making your decision(s).

'AL'

[David by Philly]

Hi Dale,

I cannot agree with Al more. I was also fairly asymptomatic. Shortness of breath only on moderate excersize, but that has been the situation for over 20 years (dectected heart murmer/mild AI when I was 12). Now, at 41, my AI was severe, but still fairly asymptomatic. Cardilogist and surgeon saw beginings of L ventrical enalragement, and said now is the time for surgery. 5 months later, new bovine valve. (Now 4 weeks post surgery and feeling great --- HI GERRY... Gerry and I had our surgeries in the same hospital, by the same surgeon, the same week)

You'll get so many opinions on valves. My surgeon did not recommend a homograft (he is a valve specialist... does over 200 valves per year). His feeling was that with a homograft, you are limited as to the quality of the valve ( there are only so many donors out there, and my being 5'11 200 lbs, anticipated a large valve 29 mm). With with porcine and bovine, each valve is more or less prefect, as their is essentially and unlimited supply of xenografts out there.

Also, remember, you can do all the pre planning with the surgeon you want, but what it comes down to is that the surgeon will make the best deciscion for you only when he is literally holding your heart in his/her hand. We were initially planning on doing a full root reaplcement using a Toronto full root porcine valve, BUT, during surgery, he felt my aorta was in excelent shape (which was questionable based on echos) and chose to implant the bovine valve (which he also feels is superior) instead.

ALSO, the bovine valve is extimated to last 15 to 20 years. I know I'll need a redo (surgeon says his goal is to get me to 80... after that, I'm on my own), but what type of surgical techniques and valve technologies will be available then???? 20 years ago, the bovine valve was going thru it's first clinical trials, and homografts were not even being implated yet.

Just more to consider. In any case, you and your surgeon will make a good deciscion.

Best of luck,

[DANIEL]

Dale,

Just turned 50 and had my aortic valve replaced on July 02 in NY. Had an aortic anuerysm taken care of too I have known about my
valve (bicuspid) since 12 yrs old. Asymtomatic my entire life, right up to the BIG OP day. Agonized over valve choice, but figured if I got enough info the right choice for me, eventually, would be apparent. In the end I went with the CE Bovine. Here is a very interesting debabte between the top heart surgeons; you can see in streaming video on the web - about 35 minutes long. Cosgrove - the top heart doc at Cleveland Clinic, Oz from NY Pres Columibia and a doc from Toronoto. Listen carefully to what they say and do not say and what they infer. This video was produced by Edwards who makes the Bovine valve, but makes fine mechanical valves as well.

http://europe.edwards.com/MedicalPr...reatDebate.aspx

Rest assured there is not a bad choice. All choices are good and will result in many many years of good living. Just depends what is right for you. This should not be a pressure decision.

NOTE !! As far as I know.......................

What ever valve you choose should be the valve you get. Have not been able to find any info regarding what the surgeon may find inside you that would force him/her to do differently than what was agreed upon in advance with you.


Daniel

[EVELYN]

Hi Daniel

Can't get on that site.......Is it me or the site?

Evelyn

[DANIEL]

Let see how this liink works. It aint you.




http://europe.edwards.com/MedicalProfessionals/Education/ClinicalControversies/greatDebate.aspx

[scottvant]

Dale--

I've only been on this forum a week; there are some great people on here.

I'm your age--had my aortic valve replaced last December. I, too, had always been asymptomatic--so much so that I didn't even KNOW I had a bicuspid valve until I got infective endocarditis--in other words, REALLY sick, during which illness my valve was destroyed, which led to the replacement. My doctors have said, based on what they saw while they were in there, that the valve was also probably mild to moderately stenosed (narrowed), but again, I have a hard time believing that since I was always very athletic--big bike rider, bodybuilder, etc., and never noticed much shortness of breath or any of the usual symptoms. Maybe since I had always had it I was just used to it, I don't know. (I will say that what the doctors predicted is true--I might not have had any concrete "symptoms" of heart trouble before, but now, seven months post-op, I feel 1000 times better--I have more energy than ever before, I feel like Superman compared to the way I've always felt.

I had the Ross Procedure. They replaced my diseased aortic valve with my own healthy pulmonic valve, (structurally, nearly identical to the aortic), and replaced my pulmonic valve with a human cadaver homograft.

Homografts are known to last longer in the pulmonic position than the aortic. Apparently, the best known replacement for an aortic valve is another living tissue valve, which is why your pulmonic apparently makes a good replacement. My surgeon put it this way: Tissue valves wear out soonest, mechanical valves last forever, Ross replacements probably fall somewhere in the middle. Upsides are, decent length of time before re-operation (my surgeon threw around numbers like 20-25 years, vs. 10-15 for tissue valves) and no coumadin. (Which, as people will tell you , for most people isn't a problem--but if you're athletic at all apparently there are all sorts of contraindications to what you can participate in--for risk of bleeding, external and internal. I wouldn't know, cos I'm not on it...) Downsides are, it's a longer, more complicated procedure, you need a surgeon that's got a lot of experience doing it, it turns a single valve replacement into a double valve operation; and down the road, truth is, you've got two valves that might need replacing later. Tho, any data I've been able to dig up suggests the autograft in the aortic position will last; it's the homograft in your pulmonic that might need to be replaced. This still isn't a bad situation to be in--when your aortic valve goes, you need a new one, no questions asked. There are case histories of patients with stenosed, insufficient, or MISSING pulmonic valves living normal lives. (i.e. if that valve fails, it's not as big a deal...) When my surgeon put it to me that way, there was no question--I didn't want an aortic tissue valve that would definitely need replacing, vs. my own re-implanted neo-aortic valve that would probably be ok with the cadaver implant on the pulmonic side that isn't as big a catastrophe if it fails.

I've all but decided I'll never be able to go balls-out full-throttle on the weightlifting again (so says my cardiologist), a fact I'm getting used to, but I have every intention of completing my 575 mile bike ride next summer and the Ironman Triathlon in Honolulu after that. My doctors say these are not unreasonable goals, with my Ross homograft, but that I probably wouldn't be able to consider it if I had a mechanical valve/coumadin.

I've seen lots of Ross naysayers--people who had one and needed re-operation sooner than expected, etc. To tell the truth--the surgery was a SNAP. Couple of days on heavy drugs then released. Sure, there's a couple of months of recovery and all that, but it didn't bother me. If I need another surgery, all that means to me is another six months off work to relax. I was so sick in the hospital I didn't have time to weigh all the options--but in retrospect, even in light of all my research since, I'm glad I got the Ross Procedure. In someone our age, who hopes to maintain any semblance of an athletic life, it's the only thing that makes sense to me. Had I had all of this information, I would have decided on the Ross myself, anyway. It's like this--you get one shot at a Ross--see if it works. If it does, you get a possible 25 years before re-operation, free of anticoagulation worries and the prospect of resuming your previous athletic lifestyle. If, later, it turns ot not to last that long and you end up needing, say, a mechanical put in, you're not out anything (much).

I know there are people on here who had a Ross and didn't have good results but it surprises me that nobody has mentioned that for a 35 year old asymptomatic patient who is a weightlifter and otherwise athletic, the Ross Procedure was practically TAILOR MADE for patients like you...

I'd say ask your doctor about it, at the very least, and see what he says.

Scott(y), waiting for the anti-Ross backlash now, unless this forum is significantly different than the others I'm on...

[ALCapshaw2]

Makes sense to me Scotty.

IMHO, I believe that most people who choose, make their decision based on what set of negatives they can best live with, given that ALL valves have their own particular set of positives and negatives.

Your comment about finding NO reason a surgeon would change from what was agreed upon caught my eye since mine DID. We had originally agreed upon a CE Bovine Pericardial Valve but when I came to, he told me he placed a St. Jude Mechanical inside instead. To top it off, he never even consulted my family when he made that unilateral decision. He just did it. I'd really like to know what he saw to prompt that decision!

'AL'

[scottvant]

'AL' sez: >>To top it off, he never even consulted my family when he made that unilateral decision. He just did it. I'd really like to know what he saw to prompt that decision!<<

Did you get a copy of your operative report? Mine was fascinating--it reads like an auto mechanic's manual. Apparently I have 26mm semilunar valves. Who knew? :) (Thought they would have been bigger cos I used to be really, really overweight) Lots of detailed information about exactly what they found and what exactly they did. Got it when I requested a copy of my whole medical file (you're entitled, by law, you know)

That might shed some insight on the situation, why he did what he did, etc.

Scott(y), noting that with 554 posts you're obviously not an amateur and probably already know all this but, clicking "send" anyway... :)

[JimL]

Scott(y),
Thanks for your very informative description of the Ross procedure, the clearest presentation I've seen. I was never offered one, don't know if I would have wanted one, but I'm curious all the same.
I agree with your description of the surgical report as an auto mechanic's manual -- quite interesting.
Thanks.

[David by Philly]

In my humble opinion...

If the surgeon ends up putting a valve in that was not discussed, you (we, I, the patient) probably did not ask all the right questions. For example, did everybody ask how many valves their surgeon does a year? Do they average, 50, 100, 200? Makes a difference.

My surgeon said I was one of the most prepared patients he met. I asked all the neccesary questions, and what type of valve was going to be implanted, and for waht reasons would they not go with it, and then what would the choice be.

Here is the rundown of what will be implanted. (I also have a dilated aortic root which may need to be replaced)

1) St. Judes porcine Toronto full root valve (part of clincal study)...... if my pulmonary valve needs to be replaced (unlikely by possible) I can't be part of the study and we will go with

2) Medtronics porcine freestyle full root valve.... freestyle only goes up to 27 mm, so if my valve size is larger than that we go with

3) Carbomedics Carbo-Seal® Valsalva Ascending
Aortic Prosthesis in case my aortic diameter is too large.


(from http://www.valvereplacement.com/forums/showthread.php?s=&postid=39600#post39600 )

I thought I knew everything.... Except I never asked one specific question. Based on echos, it seemed as if I had an enlarged aortic root and would need a root replacement which is why we were going for the full root stentless porcine valve (although one surgeon thought the enlarged root was an artifact caused by the turbulance of blood for the AI).

BUT, I never asked what would he do IF it turned out that my root was OK. Guess what... My root was fine during surgical evaluation. Implanted the CE bovine valve instead. Why? He felt it is superior to the porcine valves (Cleveland Clinic agrees) and feels it is easier to explant for the redo 15-20 years from now.

I was thrilled to get the CE bovine. Surgery was better than expected. I remember when I first met my surgeon he said, "My goal is to get you to 80, after that , your on your own" (I'm 41). I like that my surgeon is looking at where am I going to be 15-20 years from now.

Hopes this helps (and hope I didn't start any trouble);)

[David by Philly]

Although Al,

I can't understand why a surgeon would implant a mechanical valve if it is understood the patient wants a tissue valve.

(exception being requiring a larger valve size than biologically available... but St. Judes does not make large valves nothing above 27 mm)

Time to ask your surgeon

[Nancy]

Here's a link to St. Jude showing the mechanical valves they make and all the info on each design. It appears that some of them are available in larger sizes.

http://www.sjm.com/devices/devicetype.aspx?location=us&type=18

[Ross]

I'll withhold my comments on the Ross procedure.

[Creed3]

Hi Scott,
I don't think you will get any backlash here. There may be people here who do not agree with you, but they would never make you feel like your decision was wrong. Everyone's valve choice is a very personal decision and whatever you choose is right for you. I am the same age you are and I went with a mechanical valve because I wanted the best chance possible of not having to have surgery again. For me, coumadin hasn't been much of an issue at all and I am still very active and exercise etc....Not like what you do, but we have different lifestyles. We had our surgeries pretty close together. I am 9 1/2 months post op. All opinions are welcome here. People will let you know how they feel about something, but will not make you feel like you are being attacked.

Take Care!
Gail

[LoraW30]

I was 5 years old when I received my first valve implant. It was a mechanical valve and I don't believe we, my parents and I, were given a choice. If I remember correctly, my parents were told that tissue valves weren't used in children. Of course this was in 1978 and ideas have changed since then. Ever since, I have had mechanical valves. As long as I have been able to live a full life and the valve keeps that blood pumping, I consider myself lucky and blessed no matter what type of valve it is. IMHO of course.

[sylviayasgur]

hi all!
i agree with gail. valve choice is a very personal thing. either way your life is being saved, regardless of which valve is being used.

for joey (and i), ross procedure was the way to go. his surgeon who does primarily ross procedures suggested we have a backup choice lined up so that if there was a problem in doing the r.p. he would be honoring joey's wishes.
he also spent about 2 hours explaining the entire procedure and drawing diagrams based on joey's valve measurements, explaining how he would have to "taper" some areas.

i also believe that _and i hate to be negative here_ things can go wrong with any of these valves.
ross, you had a bum r.p., johnny cochran's initial cryolife synergraft fell apart in the surgeon's hands during surgery, christina's mechanical had to be replaced shortly after it was done..... this can happen with any of these valves.

so, in the end, although it does save one's life, it is still a "day at a time" thing. we've all talked about appreciating each day after the surgeries, not taking things for granted.
i think we are all aware that nothing lasts forever and we have to live life to its fullest, appreciate the small things, and enjoy it all while we can.

i didn't mean to get too sentimental, but in the end, any valve choice you make will be the right one.

be well all, sylvia

[scottvant]

Sylvia sez: >>so, in the end, although it does save one's life, it is still a "day at a time" thing. we've all talked about appreciating each day after the surgeries, not taking things for granted.
i think we are all aware that nothing lasts forever and we have to live life to its fullest, appreciate the small things, and enjoy it all while we can.<<

After word spread that I was in the hospital, (you know how bad news travels fast, especially on the internet--within hours of being admitted I was receiving flowers from college friends on the east coast I haven't seen SINCE college...) I got an email (a friend of mine was checking them and printing them all out for me to read while I was just lying there...) from a guy I didn't even know, about 3 pages long, just wanting to let me know that I wasn't the lone ranger--he had a valve replaced at 32 y.o. at the same hospital as me, two years ago--so he said he understood what it was like to be the youngest patient on the heart floor, etc. etc. (He has a bovine tissue and specifically decided against the Ross--we have since traded a lot of barbs about each other's decision; friendly, of course...) He said, "when you get out, whenever you feel like you need to vent, my door is always open."

I wasn't sure what he meant until a couple of months post-op, when I was out doing my walks through the neighborhood, I got this very powerful rush of gratitude, this feeling of just being overwhelmingly glad to still be here after what was a very intense, very sudden brush with death. (After the fact, one of my doctors told me that had I waited another week to seek help, they wouldn't have been able to; and it was not lost on me when my surgery was scheduled on a Friday (after already being in the hospital two weeks trying to get the endocarditis and anemia under control) and it was moved up to a Tuesday, as my blood was on the verge of becoming septic (toxic)... That was the most nerve-wracking night I have ever spent.)

I have found myself since this whole ordeal taking very much a "bigger picture" view of things. I'm no longer Mr. Aggressive Jerk in traffic. If it takes me two minutes longer to get where I'm going, that's worth not aggravating myself and others on the road with me... I was a chronic over-tipper before but I've gotten even more so. These days if there are homeless people loitering around out front of the grocery store I'm very apt to spend my last $3 on a sandwich for them. I have this newly-emphasized feeling if, if we don't help hold each other up, in the end, there'll be none of us left standing at all...

So I do know what you mean--I don't take a THING for granted anymore. No longer do I wake up, stare at the ceiling, dread going to work, and think, "Aw, sh*t. It's all still here.) Possibly as a physical result of feeling so much better after having my condition fixed, or maybe it's mental/emotional--but these days I practically spring out of bed, wondering what all can I get accomplished today...

Not to sound snotty or anything but I'm finding that people who say, "yeah, I know what you mean," probably don't actually know what I mean, if they haven't been thru it. That's why my new heart friend (the one who emailed me) talk all the time now; sometimes we just have to explain some little miraculous thing that happened today and realize that almost nobody else will understand why it is so moving...

Glad to hear I'm not the only one who had that after-effect..

:) Scott(y)

[DANIEL]

Scotty,

As I just had my AVR, found your email to be very appropriate re life and what is meaningful. I appreciate it. Here is something I am adding, hope no one finds this too .........................


Daniel


A professor stood before his Philosophy 101 class and had some
items in
front of him. When the class began, wordlessly, he picked up a very
large
and empty mayonnaise jar and proceeded to fill it with golf balls. He
then asked the students if the jar was full? They agreed that it was.

So the professor then picked up a box of pebbles and poured then into the
jar. He shook the jar lightly. The pebbles, of course, rolled into the
open areas between the golf balls. He than asked the students again if
the jar was full. They agreed it was.

The professor picked up a box of sand and poured it into the jar. Of
course, the sand filled up everything else. He then asked once more if
the jar was full. The students responded with an unanimous--yes.

The professor then produced two cans of beer from under the table and
proceeded to pour the entire contents into the jar effectively filling the
empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to
recognize that this jar represents your life. The golf balls are the
important things--your family, your partner, your health, your children,
your friends, your favorite passions--things that if everything else was
lost and only they remained, your life would still be full"

"The pebbles are the other things that matter like your job, your house,
your car. The sand is everything else--the small stuff."

"If you put the sand into the jar first, there is no room for the pebbles
or the golf balls. The same goes for your life. If you spend all your
time and energy on the small stuff, you will never have room for the
things
that are important to you. Pay attention to the things that are critical
to your happiness. Play with your children. Take time to get medical
checkups. Take your partner out dancing. Play another 18. There will
always be time to go to work, clean the house, give a dinner party and
fix the disposal."

"Take care of the golf balls first--the things that really matter. Set
your priorities. The rest is just sand."

One of the students raised her and inquired what the beer represented.

The professor smiled. "I'm glad you asked. It just goes to show you that
no matter how full your life may seem, there's always room for a couple
of beers!

[spartan44]

Scotty,
Thnx for the response. I'm still deciding on valve seclection. The surgeon up at Hopkins recommended the Ross, but said I was not ready to have surgery. The Cleveland Clinic is my tie breaker. I see them on the 28th and 29th for tests and a catherization.

I wanted to ask you about your workouts now. Can you lift any heavy weights or are you restricted to light weight and high reps?
Thnx
Dale

[scottvant]

>>I wanted to ask you about your workouts now. Can you lift any heavy weights or are you restricted to light weight and high reps?<<

I took it REALLY easy at first. Medical team recommended some supervised cardiac rehab at first, just to be sure, so starting 6 weeks after my surgery, I went to the lovely "Preventive and Rehabilitative Cardiac Center" at the hospital three times a week, 75 minutes per session--light stretching, and supervised (i.e. heart-monitored) cardio workouts on treadmills and exercise bikes. Did that for four months, until I got bored with it. I discharged from the rehab program early (at stage 2, there were 4 stages) with the blessing of the cardiologist on staff, since during all that time I didn't have a single blip on the radar--blood pressure never went up, pulse rate always steady, etc.

After a couple of meetings with my regular cardiologist re: what I can and cannot do now, here are the basics--I can do all the cardio exercise I can stand. One thing I've noticed is that my overall fitness level isn't what it used to be, but not because my heart isn't working--just because all that "taking it easy" has turned me to mush... So I usually get 5x weekly some sort of cardio for 30-45 minutes (about half what I was used to before but I'm workingback up to that.) At this point, I'm off weights entirely--no weightlifting at all. (Much to my chagrin.) This is probably not true of all patients, but in my case I'm dealing with some not-insignificant left ventricular hypertrophy we're trying to regress, as well as a bit of dilated cardiomyopathy. Both conditions my cardio insists will/should improve if not regress entirely as long as I behave.

To keep from turning into a complete couch potato, I'm doing yoga at least once a day. These days my schedule is:

M-F AM
20 min stationary bike (before breakfast--burns more fat that way)
30 or 45 min yoga session (usually abs or balancing)

M-F PM
30-45 min stationary bike
45-60 min yoga (power yoga or flow yoga routines w/ emphasis on chest, legs, and overall strength)

Su - Live yoga class

I don't know why, but weightlifting, the way we're used to it, is very bad for LVH. Yoga, I guess, isn't (although I swear I work as hard if not harder at that than lifting, but whatever, I'm not the doctor...).

I pushed the bodybuilding thing and the good doctor said that if, in at least a year, my LVH shows major improvement (his words) after two more echos, then he'd start me on a light weights/high rep weights workout if I want to...

Apparently there's no problem with either valve; it's the LVH that's screwed me out of my weights workouts. If you're in a situation where you're monitoring your heart and are aware of this sort of thing, this might not be an issue for you. There was a guy in my cardiac rehab sessions who had the same surgery as me at the same time, and was already starting on light weights when I left the program--but he had his valve replaced before he had any damage to his heart muscle, unlike me...

It'll depend entirely on your individual case, I suppose.

:) Scott(y), you can keep pretty killer shape just doing yoga, if some of the true devotees I see at my gym are any indication, so maybe when this year is up I won't even feel like risking the weights anymore if it means not doing any further damage to my poor overworked heart...

[ccrawford]

Scott - If you could monitor your BP while lifting some really heavy weights you would be amazed and alarmed at how high your blood pressure goes. I discovered this at a cardio rehab session using only 10# weights. I'd suggest you add some fast walking to your exercise regimen, and then you'll have a nice balanced program. I enjoyed your commentary on change of philosophy. Keep on enjoying those sunrises and sunsets, especially on your walks !!! Chris

[spartan44]

Scott,
Thanks for the repsonse. If I can't lift weights after, I will be kind of upset, but will deal with it. Sounds like you are doing great. Did you lose much weight/muscle since this whole ordeal started for you?
I think I'm like you, no concrete symptoms and have dealt with this all my life. I hope if I have the surgery that I feel like Superman after too.

[Tom F.]

You might also want to at least consider a Ross procedure as another alternative, especially as you are younger. Something to think about perhaps.

[scottvant]

>> If I can't lift weights after, I will be kind of upset, but will deal with it. <<

More or less how I'm with it at the moment, but I'll get over it. Surprisingly, since starting the Yoga, more of my muscle has come back than I expected. I hate to keep harping on that but if you lift now, and your doctors tell you after the surgery that you can't, it's a perfectly adequate replacement. (Unless you're a competitive bodybuilder...) Also, I don't know where you live, but here in L.A., guys doing yoga isn't all that weird. Other places, it may sound like it, I've gotten that response--"you do what?!?!?!?"

>> Did you lose much weight/muscle since this whole ordeal started for you? <<

40+ lbs, eesh, almost all of that muscle. BUT, that was from the endocarditis, and being that sick, with a 103 fever, for that many weeks. Running a fever like that just wastes you away... I imagine if I had KNOWN about my valve problem and gotten it fixed before I got that sick and let myself go to hell, I'd be in better shape now. Luckily, you won't have that to deal with. :)

>> I think I'm like you, no concrete symptoms and have dealt with this all my life. I hope if I have the surgery that I feel like Superman after too.<<

That was the surprising part. "Heart problem? What heart problem? My heart is fine?!?!?" I had a resting pulse of 60 (or below), worked out constantly, never felt short of breath, or any of it. But, since the surgery, even if I HAVE noticed that I have to build my endurance back up since I basically stopped working out when I got sick and during my recovery, about 7 months of just sitting on my *ss for the first time in 10 years; what I DO notice is an overall feeling of having more energy, better feelings of well-being in general, easy to spring out of bed in the morning instead of waging war with waking, no need for a nap after work in the afternoon, etc. I DO feel much better, even if before, I didn't feel broken.

Scott(y), good luck. :)

[scottvant]

>> You might also want to at least consider a Ross procedure as another alternative, especially as you are younger. Something to think about perhaps.<<

This is what I had, and so far so good. (Well, 7 months out. Probably too soon to REALLY tell, but I'm happy with this decision...) For all the usual reasons one gets a Ross--young patient, previously athletic and wanting to return to athletic activity eventually, heart healthy in all other respects other than the BAV, etc...

Scott(y)

[LKC]

Hello Dale.

Dr. Lytle replaced my very leaky bicuspid aortic valve with a CE bovine in January 2002. He also put in some dacron tubing because my aortic root was dilated, but he was able to do it in such a way that he didn't have to disturb that part of the aorta, right above the AV, where the coronary arteries emerge. I was 52 years old at the time, and like you, I was "asymptomatic," though apparently my left ventricle was looking enlarged. I had mixed opinions from cardiologists: one said to do it then, and another said I could wait five years. So, like you are doing, I went to CCF and the guys there said they thought I should go ahead and do it, so I did.

Dr. Lytle was terrific. He has vast experience and is reputed to have extraordinary surgical skills. He was very patient, accessible, and easy to talk to; answered all of my questions; inspired great confidence. I have nothing but good things to say about him. And about CCF.

I agree with all here who say that valve choice is a personal thing, though it is difficult to evaluate the considerations of mechanical versus tissue when you haven't either gone through the surgery or lived with coumadin. Intuition and self-image are involved, but at least it isn't a "right or wrong" decision, only a "which is better" choice.

If I may make one suggestion, I have come to believe, in retrospect, that it was very valuable to me to have spent the time I did prior to the surgery listening to the guided imagery tapes. I listened to them and let them put me to sleep for two or three weeks before the operation, and I now think that, in a very subtle way, they helped me a lot to prepare for and to enter the experience in the right frame of mind. They are not a big investment, so if they don't work for you, you won't be out much.

Good luck to you.

LKC

AVR - January 2002

[ALCapshaw2]

Scott -

I was *very* interested in your comments about hypertropy and gradual recovery. My cardiologist told me NOTHING about LVH but I suspect that may be present. Do you notice any fluid retention? If so, has your cardiologist suggested any connection to LVH? What parameters indicate LVH in the Echo report?

'AL'

[spartan44]

LKC,

Thnx for your insightful comments. I have also heard that Dr. Lytle is great and am looking forward to meeting him and others and getting thorough and honest opinions. I'll look into the guided imagery tapes. CCF sent me material about it.
Thnx again

[sylviayasgur]

hi scotty, dale and all ,
guided imagery is really great for relaxation. i think chc gives out diane tusek's tapes/cds in their packets. they are amazing. i still use them when i can't sleep at night. she is such a nice person and has such a soothing voice.
check them out at:
http://www.guidedimageryinc.com/

about lifting weights.....
joey is by no means a body builder, but he is now lifting weights he was never allowed to lift presurgically.
i'm not sure what he lifts, but they are not just light weights with many reps. i think he alternates.
also, he runs and bikes about 5 days a week (when he is not on the golf course).
he feels much stronger and better than ever before. if anything gives out or hurts it's his joints or legs, etc. from overwork.
i'm sure it doesn't hurt that his cardiologist, although fairly conservative, is a marathon runner and one of his contemporaries.

good luck whatever choices you make.
be well, sylvia

[scottvant]

Sylvia sez: >>joey is by no means a body builder, but he is now lifting weights he was never allowed to lift presurgically. i'm not sure what he lifts, but they are not just light weights with many reps.<<

I guess what threw me was, my cardio said, 2 months post, "I don't want you lifting weights until July..." So July was circled in big red pen on my desk calendar... As July got closer and I guess it became apparent that my LVH/myopathy was still hanging around, the answer became "no more weightlifting for you."

Which is why I've decided to behave myself. I'm getting the impression that if those situations regress, then it won't be that big of a problem...

Time will tell.

[scottvant]

AL sez: >>I was *very* interested in your comments about hypertropy and gradual recovery. My cardiologist told me NOTHING about LVH but I suspect that may be present.<<

Mine didn't say anything either until a few months out and he put me on the Coreg to help handle the situation. I wanted to know what the drugs were for, and he told me. Why didn't anyone tell me this in the hospital, if you knew then? I wanted to know, and he didn't have an answer. Clearly a case of not telling the patient anything he doesn't need to know. Which is why I was irritated and distrusting of him until I got him to understand that I want to know EVERYTHING, right when he does. He's cooperating with that now.

>>Do you notice any fluid retention?<<

No. That has been the baffling thing--I actually feel WORLDS better than before the surgery, and no matter how hard I push myself in my cardio workouts, I never have "heart" symptoms--SOB, or lightheadedness, or any of that, and I don't get swollen or retain fluid. Still, I know there are issues--from the echo report:

>>If so, has your cardiologist suggested any connection to LVH? What parameters indicate LVH in the Echo report?<<

I notice, in the echo reports I got from all three doctors, one thing in common about the reports--they all seem to print out on a "standardized" report, and for any given reading where no value is indicated, your findings are considered to be normal. (All of this I have found out *since* I posted my question, "can anyone here read echos...") There's a section for valves, and under Tricuspid, Pulmonic, Mitral and Aortic there are several categories, regurg, insuff., or whatever. No values entered in those blanks indicates no detectable anomalies in the valves. The areas of my echo report where MY findings start to show up are the "ventricular wall motion." There are all sorts of medical terms for the different "walls" of the heart muscle, basal, anterior, superior, septal, etc... Again, normal readings are not reported. Several of the "walls" on my left ventrical indicate "hypokinetic," which I found out means, not moving enough--not contracting as hard as they should. I also have noted, "Reversed septal wall motion is seen and is a common finding in the post open heart surgery patient." On my septal wall areas on the report is found, "dyskinetic." I'm not exactly sure what that means but my cardio says it's harmless and nothing to worry about, I guess, other than it makes me "aware of," or "feel" my heartbeat in my chest more than I used to. (Which is true.)

The connection to LVH is indicated in a section called "wall thickness," and for the walls that are hypertrophied, a value ( like <=1.1 cm or something) is given. (In my case it's three walls on the left, one on the right, and septum...)

Again, my cardio stresses that neither my myopathy nor LVH is so advanced that it isn't completely reversible, at this point, Ijust have to be careful to avoid conditions that exacerbate LVH already present--like hypertension, WEIGHTLIFTING, etc...

We'll see.

[David by Philly]

Hi Scott,

At 5 weeks post surgery, I am now allowed to lift 15 lbs. Next month 25, and Sept. 11th... 150.

I haved lived with not being able to lift more than 50-75 lbs for the last 15 years or so. (Card. restircitions) Now, will finally have all restrictions lifted. BUT... I waited 15 years for it. Had I not waited, my surgery may have been in 1993 instead of 2003. ( I was forutanate that my cardiologist and urgeon recommend surgery prior to anything but miniscule enlargement)

One thing I have found during my recoverY. Every single day I feel better and stronger. I have almost reached my pre surgery stamina (can tell when going up a flight of stairs). Patience.... I am starting to realize that excercise toward health is not a goal, but a way of living. Go the way of being ehalthy and fit, leaving behind the need to push (said from someone who likes to push himself... Just ask Gerry Dorrian)

Best of luck my friend

[ALCapshaw2]

Thanks for the detailed explanation Scott.

I'm still looking for an internist (preferably one who specializes in Cardiology) in hopes of finding someone who will take the time to explain all the details of my condition. Unfortunately, Internists are in short supply in our modest sized (high tech) town.

It's clear my cardiologist doesn't want to be bothered which is probably part of the operating philosophy of the (Hospital sponsored) Heart Center and their 20+ Cardiologists. It appears they only want to spend their time on serious (read revenue generating) conditions.

'AL'

[scottvant]

AL: >>It's clear my cardiologist doesn't want to be bothered<<

I think I mentioned what I did in my similar situation--I requested a copy of my medical file from my regular doctor (under agreement with my cardiologist, he sends copies of everything HE notes in my file, to my regular doctor.) I got a copy, made ANOTHER copy that I could trash, and wrote notes and yellow-highlighted it to death. Went in for a regular cardiologist appointment, slapped the folder open on the counter and said, "I hope you blocked in some time for me, because I'm not leaving until you explain everything in here that I want to know... "

I haven't had to do that since, cos he knows now.

:) Scott(y)