33 and looks like I'm up for a valve job

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J

JBR

Greets folks. Just found out that my aortic regurgitation has gotten to the point where they recommend surgery... I'm still reeling a bit.. My numbers were something like 5.2 cm/7.2 cm and 40%. I'm 33 now...

I actually found out about this when I was 18. It wasn't too much of a concern... So, me being the idiot I sometimes am didn't look into it again until recently (just had a baby) and the wife finally convinced me to go in (well her and a friend thought it would be good to have an old pec tear looked into so I figured I'd check all the problems out at once).

My symptoms are fairly mild.. I've found the need to take longer breaths every so often not because I'm out of breath but because it makes my system feel better. At night I wake up sometimes and my heart is beating loudly/harder -- same # of beats/minute though. But, I could go jogging for an hour and not be breathing too hard as long as I went slowly.. The times I really get out of breath is if I sprint up some stairs -- but then everyone seems to...

So the eternal question I guess: mechanical or tissue. Well, I'm an active person... Was into lifting for a long time until my tear, now I do more cardio and light lifting (I wonder if that will have to change). Did Tae Kwon Do for a couple years recently... Like to ski every so often, etc. Recently I've gotten into car club track days. My work life for the last 2 years has had tremendous stress. I was born with a bicuspid valve btw. I wonder how much of my condition getting worse was genetic, how much was due to my lifting, how much has been do to excessive stress (during which time my exercising was decreased dramatically).

My first cardiologist recommended mechnical. He didn't even discuss tissue as an option (nor did he mention Ross/etc). I'm going for a 2nd opinion tomorrow (another cardiologist), then I have 2 separate heart surgeon consultations (one on Tuesday one on Friday).. The 1st heart surgeon asked me to get a chest x-ray before I see him (I'm not sure why).

Personally I'm leaning towards tissue at this time -- if I can get it to last for 10 years or so before having to do another operation, that sounds pretty good (specially if those years can be lived w/o much change).. But, I guess if all the cardiologists/surgeons recommend mechanical after hearing my story then I'll prolly go that route.

On the positive side I had a baby this year, making it one of the best years of my life (she was a preemie but is doing very well now -- 7 lbs 11 oz :)). So, I figure this being one of the worst things will make it quite an average year ;) And I'm happy that something can be done about it -- I can't even imagine the poor people who have to deal with something that can't be cured (AIDS, some cancers, etc) -- or those that have to go through other terrible ordeals (having your kids kidnapped or killed or whatever). So, in the grand scheme of things I'm dealing... I also have learned some (obvious) good lessons in life -- always check things out -- get second opinions -- etc..

I'd love to hear from other active folks in their 20s-40s who had to make this decision and hear their pros/cons/history... Actually, I'd love to hear everyone's input.
 
Jbr

Jbr

Seems that you are still the new kid on the block, even though you were initially diagnosed at eighteen. Your condition was in the mild stage at that time. Now, you are getting short on breathe, fatigued and feeling confused. Everyone here goes through that till there is education and information to make you knowledgable of your problems. Since you are young, I was 36 when I got my St. Jude's aortic valve. Depending on your valve problem, the decision on the valve with be with information with the surgeon and possible be made at time of surgery. But, most of the time, with information and getting yoru informed of what is availabe in choices, you will be able to make the initial decision of what valve you want. When you are young, it is viable to have a mechanical valve, which lasts 20 or more years. You may have to on coumadin, or warafin(blood thinners), you will not have replacement surgery for 20 or more years. With tissue valves, there have been improvements, you have a 10 year guarentee before replacement. You have to get all the information from the surgeon, from here, and web sites, to get educated. You will have so much informaion, you will be informed. Take care and come in often. At least, you are taking an interest in your well being. Get with the cardio and a surgeon. Then get informed on what options you have. Keep us updated. Take care.
 
Hi JBR,

Looks like we are fellow oarsmen! I am 32 just found out about a murmur and aortic valve problem mine is stenotic instead of regurgitant but I also need AVR. I have a kid too ( he's two ). I am fairly active ( used to swim and bike regularly ). My symptoms are about the same as yours, i.e. pretty mild.

I dont think you have done anything to make yourself worse, on the contrary your active lifestyle is probably been good for your heart ( and its valves ). Sometimes we get unlucky and the shape of our aortic valve ( due to disease or congenital deformity ) is such that it hinders the flow of blood enough to cause marked turblence and friction around the valve orifice which leads to tissue injury and triggers the body defence mechanisms to begin the calcification process. I would be surprised if exertion made a difference to this, sounds like a very gradual process thats been almost predetermined for atleast a decade. Should disclaim that this is very heuristic i.e. I have not studied this rigorously from the basics.

Re: valve choice, if my heart turns out to be in good enough shape for the Ross procedure I think that will be my first choice.

Here is why:

-- The Ross procedure puts your own pulmonary valve in the aortic position, the pulmonary turns out to have about the same size and shape as the aortic but faces less pumping pressure ( the right side just has to feed the lungs ) so it is probably the best replacement for the aortic valve given the current state of valve tech. Any current non-native valve probably induces a larger reaction ( clotting, rejection, calcific degeneration ). The new pulmonary valve is usually a homograft ( a donated human valve ) and it is more resistant to degeneration due to wear and tear becaue of its less stressed position. This gives a mean lifetime of 20+ years before re-surgery is required. No anti-coagulation is necessitated to reduce clotting and the risk of stroke.

-- In terms of ease of blood flow there is nothing better than your native valve, your pulmonary valve is very close to your aortic, and in the hands of a top class surgeon there should be very little post operative gradient across it. This is especially important if it is important for you post-operation to be physiologically as good as possible.

The cons:

-- The pulmonary position is now compromised as well, i.e. a single valve disease is converted into possibly a double valve disease.

-- The operation is more complex -- requires greater surgical expertise, and takes longer. You spend more time on the heart, lung machine. I dont know much about the effects of this but they are definitely unpleasant ( anaemia, possibility of micro air bubbles in the circulation etc. ).

-- If the procedure is not possible you need a) backup choice of valve b) some un-necessary cuts will be made to look at your pulmonary valve.

The first choice of my latest cardiologist was the Ross procedure as well, he is the director of the adult congenital heart disease center at the NY Presbyterian and works closely with one of the best Ross surgeons around so he says it is easy for him to recommend this. I am looking at the best Ross surgeons around the country here are some names:

In NYC
-- Paul Stelzer, Beth Israel
-- Jan Quaegebeur, Columbia Presbyterian.

In LA
-- Hillel Laks, UCLA
-- Vaughn Starnes, USC

In Oklahoma city
-- Dr. Elkins

and somewhere is montana there a Dr. Oury
at Cleveland clinic Dr Gosta Petterson

you should go with a surgeon with atleast 100+ Ross procedures participations, these are usually performed by the best surgeons at top centers.

i will be doing some more looking around before i decide as well so will keep you updated on my progress.

congratulations on your baby girl :)

Regards,
Burair
 
The chest x-ray is probably to get more information on:

a) the extent of calcification of the valve
b) the condition of the ascending aorta

you should ask the cardio you are seeing about this as well
 
Me too

Me too

Good afternoon,

Well, it looks like we are in about the same situation, asking the same questions, etc. I am 35 and will be facing surgery sometime soon. I also used to lift weights until told not to two years ago. I still jog now, but am always thinking what ifs...

I'm also leaning towards tissue as I would like to continue my lifestyle as is for another 10 years or so.

Well, I will be paying attention and I think we will get a lot of good info from the caring people here.

Congrats on your child! My sister had a four months premature baby three years ago with a 10% chance of living and the baby (toddler?) is doing great now!

take care,
 
Ross, Tissue, or Mech?

Ross, Tissue, or Mech?

I agree with Burair, JBR. Of current choices, the Ross procedure has the best outcome possibility, if your case qualifies.

I think I wouldn't be as concerned for the heart-lung machine time, though, as the Ross docs are often good enough that their times are fairly close to a more standard AVR by a less experienced cutter.

Apart from the Ross Procedure (and also as a backup), of course tissue is an option. None of my cardiologists or my GP considered it an option. My GP relented, when I explained myself. The cardiologists all thought (think) I am nuts for insisting on it, although they have commented favorably on the current results. The surgeon, however, was happy that I wanted a tissue valve, as he favors them, a growing trend with surgeons.

You'll likely get more than ten years out of it, given some of the new treatments. Someone my age might figure about twenty years, but your youth traditionally works against the longevity of the valve. The beneficial effects of the new anticalcification treatments are still a wildcard on younger valvers. Could be more: might not be. Not very helpful.

There are benefits to a mechanical valve at a young age, in terms of the valve's life and the recurrence of surgery. However, if there are other valves involved, such as is frequently the case for those who had rheumatic fever or other illness that caused the original problem, the likelihood of a required second surgery should be weighed in your decision.

At your age, I would be hesitant to say that even a mechanical valve would necessarily be a lifetime remedy. The valve itself would last functionally, but a heart issue of some kind always seems to come up before 30 years have passed (although there must be someone by now who has gone over 30 years on one mechanical valve). While they definitely outdo tissue valves, so far the lifetime promise of mechanicals is still theoretical.

As far as long-term survival, the stats seem to favor neither very greatly. Mechanicals come with Coumadin therapy, which has its own set of risks. Tissue valves come with the risks of resurgery. Coumadin requires daily discipline, regular testing, and vigilance when dealing with medical treatments. Resurgery requires the emotional and physical roller coaster to run its course every x years. Thus the arrow pointing to the Ross Procedure.

There are many here who handle Coumadin very well, and some who don't. There are marathon runners on Coumadin who frequent this site. My suggestion is to spend some time in the Coumadin forum, to get acquainted with some of its issues, but to also look into Active Lifestyles, to see that it doesn't stand in everybody's way. Check Al Lodwick's site as well. How well or easily it works for you personally may be luck of the draw.

There is an element of freedom in the tissue valves. I take a 25mg Atenolol (beta-blocker) in the morning and in the evening. If I miss one, it's not a problem. I will be going once a year for an echo and a cardio visit after this six-month check is over. That's all for me. I eat salad indiscriminantly. For all intents and purposes, my lifestyle is normal.

Some semicoherent thoughts to mull over. If you want links and specs for different valves, post, and someone here will undoubtedly assist.

Best wishes,
 
Hello JBR

Like you, bluebear and papahappystar I am in my 30's and have recently joined the VR forum (see my first post if you are interested as we are in a similar boat - http://www.valvereplacement.com/forums/showthread.php?p=95598#post95598). I was really happy to find such a great resource. A lot of the members are extremely well researched as well as experienced in the area that will now come to play an important part in your life.

I know how you feel re fitness. I was fitter 8 months ago than I have ever been in my whole life, blissfully unaware of what was coming. I admit now to overlooking a few signs and writing them off to "old age [36yo!!!]", muscle strain from the gym, or in my case pain from an old broken sternum. Now I know that I am fatigued because of the state of my aortic valve. I now know what it means to be breathless, even from talking quickly sometimes. I was actually lucky to have been diagnosed as it only occurred due to an employment medical which picked a large ascending aortic anuerysm. The aortic valve problem is secondary although it is the symptomatic part of my condition. No real symptoms are caused by the anuerysm at this stage.

So, I will soon join the VR club properly soon (weird initiation to this club if you ask me) as I expect surgery in about 3-4 weeks. I found I was being told mechanical is indicated for me because of my age but am leaning toward tissue for lifestyle issues. As a lot of people on the site say, ask your surgeon what s/he would prefer if they were in your position. I think I will look seriously at mechanical 2nd time around. By that time, the meds situation will have improved remarkably I would say. Then again, I am sure the advances in tissue will be just as impressive. There is no time like the present I guess. Medicine is amazing isn't it?

As for life expectancy of tissue, as others say that is improving all the time with anti-calcification treatments. Bob posted a link on some of the top contenders the other day. The link to his post is http://www.valvereplacement.com/for...t95982post95982

On a related issue, have any of VR's experienced members see the Carpentier-Edwards site's latest news? Go to http://www.edwards.com/AboutUs/LatestNews/ - then go to the story titled "Edwards Lifesciences Announces First Live Implant of New BioPhysio Heart Valve".

Comments in the press release include....."We expect that this new valve's unique design features, combined with the decades of durability demonstrated in Carpentier-Edwards PERIMOUNT tissue heart valves, should be a great benefit to patients who require aortic heart valve replacement," said Prof. Carpentier. "The BioPhysio valve's unique features are likely to make it a valuable therapeutic option for a young and active patient population, whose lifestyles require a high-performance valve that does not require anti-coagulant medication." "The BioPhysio valve is the first stented valve that expands and contracts with each heart beat, which is designed to perform like a natural heart valve, but retain the ease of implantation characteristics of a stented valve,"

see you next post
Darren
 
Listening to my gut

Listening to my gut

I'm getting close to the big day. A surgery date to replace my bicuspid aortic valve hasn't been scheduled yet, but I think I'll be carved before the turkey.

Thanks to this amazing website (sending in some financial support is on my checklist), I have found answers to every question that pops into my head at 3 a.m. in the morning. The web sure beats late nite tv.

Valve choice has been a huge question for me. The posts here have been extremely helpful. But they have also left me talking to myself at times (which isn't embarassing because everyone else is asleep).

One guy recommends one thing. Another gal says the opposite. A third person pipes in with yet a different point of view. The homework on heart surgery could drive you crazy.

But, like Richard Nixon once told Dwight Eisenhower (you did mention you were interested in hearing from people over 40): "General, there comes a time to %$#@*& or get off the pot".

That time has come for me. I have read all of my homework assigments and I am satisfied with my answer.

Now, I'm listening to my gut.

Good luck.
 
I'll chime in here as a satified customer of the mechanical valve. Valve choice is personal - although 13 years ago I wasn't given a choice. But the choice that was made for me was fine. I was 32 at the time and had 2 young children (Kindergarten and 2nd grade). I was told that mechanical was the only choice because a tissue would have required a re-op by about year 10. One school of thought is that the younger you are, the shorter amount of time a tissue valve works. The heart beats stronger and a younger person is more physically active.

The doctors were concerned about signing me up for a life on Coumadin, but felt it was preferrable over re-ops. Getting a mechanical doesn't completely rule out the possibility of a re-op, but it's not a given, like it is with a tissue.

I look back at my active life raising active children and am very thankful that I did not have to include another valve replacement in those year. I would have had to, had I been given a tissue valve. My children would have been teenagers when I needed to lay low for several months of recovery. Bottom line, my life would not have had time for another valve surgery.

I do realize that even though I have a mechanical, it doesn't mean I will never have to have another re-op. At 13 years, my valve shows some mild calcification, but is seated well and working well. I go Wednesday for my yearly echo, so we'll see what that report has to say. Last year I had a mild leak of my aortic valve and a bit of enlargement. That however, the doctor feels, doesn't have to do with my mech mitral valve.

Life on Coumadin hasn't been much of an issue. I test every 2 weeks because I'm not all that stable. But I eat and drink most of what I want. Compared to what diabetics must live with, I don't feel too sorry for myself.

Now, at 45 I would seriously consider a tissue valve, but would still probably go mechanical. Some people say they know they can't live a life tied to Coumadin. I, on the other hand, would prefer not to live a life knowing I definately had another surgery coming up - since I've already been through one and know what it feels like.

Just wanted to give my perspective. I would give some caution to placing all your bets on improvements in medication and surgery by the time your re-op comes around. It could quite possibly be the case. However, I would imagine those that worked on the first mechanical hearts would have bet that, by now, they would be widely used. We do benefit by mechanical hearts now, as a stop gap measure. But there aren't people living normal lives with them and that was the original goal.

But we all are in the same boat - no separation in respect or affection here because of valve choice.

Best wishes to those facing that choice today.
 
Dr. William Ryan is an excellent Ross surgeon in the Dallas area. He is at Presbyterian Hospital in Dallas. I'm 40 and had my Ross last November. Two of my co workers are also having Dr. Ryan do their Ross procedures. One guy is 42 and the other is 47. The 47 year old ahd his done a few weeks ago and is doing really well. I think as a general rule, if you speak to a cardio or surgeon familiar with the Ross they will recommend it. However, it's not easy and not many surgeons want to take the time to learn it. They can make a good living off of mechanical and tissue jobs that are much easier for them. It's you that has to deal with it all after you leave the hospital. Check out all your options and don't let anyone person sway you.

Best of luck,

Jim
Ross Procedure 11/18/03, Dacron Graft to resize Aorta
 
I'll be 33 in Dec and am also on the waiting list. Mine was a congenital heart defect with the end result being I'll need my pulmonary valve replaced (..at this stage, I'm at the point where I'm hoping it's sometime soon :( ..).

I was always very fit and active. I did water aerobics, dancesport, lots of walking, bike riding, etc, etc.... I also thought I was just getting old and out of shape (at all of 30) but it seems the ol' ticker was the culprit all along (..although I won't bore everyone who's read my story too many times already by repeating it again!..).

Unfortunately, I don't have a choice between tissue or mechanical as is seems there isn't a mechanical designed to replace the pulmonary - or at least, it's a VERY rare option (there seem's to be a bit of debate/confusion over this), so it seems I'll be getting a tissue - end of story. When I spoke with my surgeon he told me they'd be using a porcine - again, there was no discussion, I was just told.

It's funny you mentioned taking "longer breaths"... I found I had lots of people asking me what I was "sighing" about all the time. Back then I didn't really think about it, but now I realise I was just trying to get more oxygen in my system.... which kinda shows me just how long I've not been feeling "right" for.

Anyway, good luck with your decision. I'm sure you'll make the one that's right for you... and good luck with the new baby girl!!

Cheers
Anna : )
 
As a 41 year-old male who had AVR surgery when I was 40, I opted for the mechanical valve. Because it was only 4 weeks between diagnosis and surgery, it happened pretty quickly and I didn't have the benefit of performing any pre-operative research. (I found this great site the weeks after my surgery while I had A LOT of time to surf the web).

Anyway, like you I was always very active and athletic. I still am, however I now approach my activities differently. I used to lift weights 3-5 times per week since I was 16. I was never into bodybuilding, however I lifted for sport-specific benefits and for the joy of staying in shape. After my surgery and following my cardiac rehab of 12 weeks, I slowly started back at my workout regime. However, I only lift two days per week as my interest has grown beyond the weight lifting as a result of my surgery. Perhaps due to the critical nature of my situation, I no longer want to spend 5+ hours inside a gym. I still enjoy the working with weights, however by only lifting two days per week, I have recovered to 95% of my pre-surgery shape and it seems like I have better workouts because I'm allowing my body more time to recover from the previous workout.

My new regime allows more time for outdoor activities like biking. I also have two young children to chase around and it seems like I'm enjoying life more with much more diversity in my activities.

Back to valve choice, I have been pretty stable with 5mg of Coumadin per day and it's no big deal. I cut myself a few times this summer while sliding during softball and the world didn't end.

I did have to give up knife-juggling though.... :p

Good luck!
 
Thanks for all the replies. It helps to hear from other folks!

I'm leaning towards doing a CEP tissue. Both ways (tissue vs mechanical) have their pros/cons, so I can respect people going in whatever direction they chose.

Right now we are thinking Oct 18 or Oct 22. Crazy.. it might just be weeks away!

They mentioned some folks get pretty depressed.. I'm hoping my cute little girl (and my cute little wife) can get me through that -- haha.

So -- people's thoughts on depression and pain immediately after?

PS: I bet my daughter gets a kick outta her daddy having some cow in him!
 
Hi JBR,

Glad you made an informed choice. I am looking at surgery around the end of november - beginning of december.

Wish you the best with the surgery and future happiness with your family.

Burair.
 
JBR,
I am a 37 year old male. I am scheduled for AVR on Oct. 18 I decided on the Tissue Valve after researching all the options. I too am active, however not as active as you. I coach my sons baseball teams and am active with them. I decided on the Tissue Valve because I didnt like the idea of taking blood thinners for the rest of my life. One hit with a baseball or a cut with a pocket knife while fishing or something and i would need to be prepared for bleeding.

As far as the post op goes, I had surgery when I was 16 to repair the valve at that time. From what I remember and what I am convincing myself now is that the pain isnt so bad. RIght afterwards you have Morphine or similar to control the pain and by the time you go home, tylenol is all you need. It will be very hard to be confortible no matter what position you are in. Get a good recliner as it will be easier for the first week or two to sleep in the recliner than on a flat bed.

I found the depression to be worse before the operation. I have been dealing well with it, but like you I have children and a wife to think about. The thoughts of not making it through the operation and not being there to see you kids grow up is enough to make you want to drink!

From what I remember of the post op. You are so glad it is over and you are alive that you don't really think about being depressed just the opposite.

I found this site recently myself. I am so glad I did! The people here are great and you would think you have known them all forever. We are one big family! Welcome aboard!

Jeff
 
Pain is no big deal. Make sure you take your pain meds before you get totally unnumbed and you'll be fine. Really, it's not that bad at all. At least, not as bad as you'd think it would be.

The depression thing-Some say we mourn our own deaths. You may bust out crying for no apparent reason. You can't help it, it just happens. It's a combo of everything from drugs, trauma, and your very soul being played with. It will go away in time. If it doesn't then you need to talk to a counselor about your feelings and get them in check.
 
JBR:

If you have decided to go the tissue route, from what I have read the CEP (Carpentier Edwards pericardial) valve is as good as they get. Their latest approved model is a Magna 3000 TBX (I think those letters are correct), which has anticalcification fixation and improved blood flow characteristics. You probably know all that by now. If you get one put in by a good surgeon in a good hospital, odds are you will not have any problems until it eventually starts to calcify. Odds are that you will have to have it replaced sometime down the road, but I respect your opinion about not wanting to be on anticoagulants. I feel the same way and will opt for the same kind of valve when my time comes, unless I find out anything else inbetween. However, my "advantage" over you is that I'm nearly 62, which is pushing twice your age (gak!) and thus have a possibility of such a valve lasting longer.

Anyway, good luck with the surgery. Sometimes I wish I was scheduled to get mine over with in less than a month's time............

Cheers, Jurassic Cowboy
 
Welcome JBR! I'm 43 and had been very active until I contracted endocarditis last October. I was born with a VSD, and when I was 17 they detected that my VSD was causing my aortic valve to prolapse, which in turn caused leakage and regurgitation. It didn't slow me down much until about the time I hit 40, and I just assumed my increased fatigue was due to getting "old". I still didn't slow down much until I got sick last year and the endocarditis further damaged my aortic valve. Once I recovered from that my cardiologist informed me that it was time to repair the VSD and replace the valve. I went and saw a surgeon in Nashville and he recommended a mechanical valve. I decided to do some research and that's when I found VR.com. After finding out all of my options I decided to get the Ross Procedure and VSD repair done at Duke Medical Center. I lived 30 minutes from Duke for 30 years and my parents still live close to Duke (I moved to Nashville in 2002). I'm happy with my decision and would make the same choice if I had it to do over again, but having been through the surgery I can understand why surgeons often recommend mechanical valves for younger patients. The surgery was not that bad, but in my opinion it's not something you want to put your body through too many times if you can avoid it. It really comes down to what you feel is right for you. As I tried to come to a decision it seemd like all of the valve options had pros and cons which made it difficult to choose. I finally went with my "gut feeling" that the Ross was right for me, then I selected a sugeon who is an expert at doing the Ross and doing congenital heart surgery (for my VSD repair). I have come to the conclusion that selecting your valve is a very personal decision...all we can do is help give you information and our experiences.
 
Hi JBR! My name is Larry, and I've been reading posts on this sight for a long time but I've never posted. I feel compelled to do so now. I am 50 years old and when I was 35 I had contracted endocarditis and also had a bicuspid valve that I was not aware of. I had emergency aortic valve replacement at Georgetown University performed by Dr. Richard Hopkins. Because I was a professional athlete (thoroughbred jockey), Dr. Hopkins opted to put a porcine valve in due to my occupation. Because it was an emergency operation, I didn't have any input about what type of valve to use, but I was happy with that choice. Unfortunately, six months later I developed a fungus and had to have the valve removed. This time I did have some input, and Dr. Hopkin's choice was a homograph which he would have used the first time if he had enough time to do so (I was dying the first time and it's a more complicated operation). Anyway, to help answer your question, I continued riding thoroughbred horses for another ten years before retiring. As an athlete, my valve was subjected to rigorous activity without any complications. It has been fifteen years, and I just had an echo which showed a minor leak that I have always had. I hope that this has been some help and if you have any questions, please don't hesitate to ask. Larry
 
Welp, I'm going in for a CEP for my AVR on Monday morning. My surgeon is Dr. Swanson (cool guy). I went in for some prep work yesterday and almost everyone was "whoa -- you are too young for this". I was like "umm ya.". Haha.

Crazy crazy.
 

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