I think I might have chosen. For now.

[JeffM]

First and foremost: David, Choudoufu - I want to read anything you guys write. Aside from my vested interest in matters of the heart, you guys take writing to a refreshing level of entertainment while getting your points and questions across. Thanks for that. Regarding the valve choice: It would sure be easier if there weren't so many variables. I went with tissue not just because I didn't want ACT, which, by the way, has been a peice of cake while temporarily on it. My 24 Holter scheduled for tomorrow, will determine if I can stop this med. if the results show no arrhythmias. I realize the therapuetic INR range is lower for tissue than for mechanical, but going to the lab every two weeks, has not been the inconvenience I was expecting. Also, home testing is the answer for long term ACT in terms of convenience. I read that a mechanical valve might not support the blood flow needed for high intensity athletics (gradients, red blood cell damage) and finally, what some people describe as comfort in the sound of the ticking was a factor for me. I'm the guy who is bothered by a loud watch ticking, a little rattle in the car that most people never notice....while i'd likley get used to it, the thought of being haunted by that sound was a consideration. My hope...and that's all it is for now...is that a tissue valve replacement will require an easier, relatively lower risk procedure when (10, 15, 20 years?) I need it. I like what I've been reading about this latest (third) generation of tissue valves. The second gen. are going over 20 in people over 65. These third gens are treated with a product that, in theory, further retards the calcification process created by the stronger immune response in a younger person--the main reason for valve re-op outside of initial complications. But they haven't been out there long enough to provide reliable duration data. So far, I've been happy with my decision to go tissue. I seriously considered the Ross but decided against it because of the longer, more intricate and risky procedure involved. Also, fewer surgeons have the expertise and experience. Additionally, you're essentially taking what would be a one valve operationand making it a two valve procedure. Longer time on heart/lung mach., more trauma, more healing. Recent mixed data on duration of P valve in A position. I'm eager to see long term data on the ON-X with the low dose aspirin and no ACT patients. As far as the prospect of another OHS, if I must, it was no picnic but it's now been 16 weeks. It flew by. I rode a hard 47 miles yesterday and, other than occasioanl lightheadedness (never while on the bike), I feel great. I figure, if I can stay in good shape for my next procedure, OHS or something less invasive, I should come out of it fine again. That's my thinking. There are no clear choices though, you're so right. Good luck with yours and please continue to update us on your thoughts and eventual recovery.

 

[gadoty1]

My aortic valve started leaking immediately after my Ross and got worse over the years until it needed replaced again. i asked my surgeon why it was leaking and he said it just wasn't a successful surgery. Also I ended up with an aneurysm which could be from bicuspid aortic valve patients being more prone to them and could have been because my valve was leaking so bad. After they took out my aortic valve this time they found a whole in one of the leaflets. They said that can happen from endocarditis but it doesn't look like I had endocarditis ever so they don't knowwhy it happened.
I'm not saying don't get the Ross because I know there are some people on here who had it done and are doing great. This site was so helpful for me when I was in your position. I was all set to go tissue because I was scared of coumadin and the valve noise. After listening to everyone and asking lots of questions I decided on mechanical and I am so glad I did now. I got my home monitor a couple weeks ago and I already forget sometimes that I had my surgery 6 weeks ago. I have to make myself slow down so my chest muscles won't get too sore. The ticking bothered me a little when I was trying to fall asleep but it's pretty quiet and I rarely heard it during the day. Now I never even notice it unless I want to check my pulse I don't have to feel, just listen really hard. I'm trying to hear it right now over my household noises and I can't. Coumadin hasn't been a problem for me at all. Very easy and I don't bruise any easier now then I did before on a daily aspirin. I have cut myself shaving and it wasn't any different really.

 

[tobagotwo]

In response to gadoty1's post, those with bicuspid valves need to be particularly careful when approaching the Ross Procedure, because if they have developing tissue problems that sometimes go along with bicuspid aortic valves, their pulmonary valves are often affected by the same issues as their aortics were, and may be incapable of picking up the burden for long.

The sound of it is that gadoty1 may have myxomatous tissue associated with congenital bicuspid valve disease. The aneurysm is a corroborating problem, sometimes attendant to bicuspid valve disease. It seems that this still happens with some Ross Procedures, so some levels of tissue problems may be difficult to detect, or it's possible that some surgeons may not wish to take the time with the patient on the pump to have the lab make that determination.

It's a risk that should be considered carefully. Not all bicuspid valve owners develop other tissue disporders. For the right patients, the Ross Procedure can be the best of possible worlds. However, a failure means involvement of two valves, rather than one.

Best wishes,

 

[Alerion]

Gadoty1 - Yikes! What am experience! Glad you are doing better and dealing well. Man, I am verrryy skeptical about my chances for the Ross. I'm feeling a bit like saying "screw it! - Not worth the risk"

Tobagotwo - Thnx again for the reasoned response. I know a lot of factors will go into deciding whether the Ross is good or even possible for me. Its allure is undeniable though!

Ross, I was glad to read this-

"Not necessarily. There have been surgeons who installed the On-X for the first time. It really isn't all that different from putting in any other valve. You still want a surgeon who's done a lot of valves though, period. Not the new kid on the block just out of school."

And, my friend, I am grateful for your (and everyone else's) guidance -

"Now you can hate me for telling you like it is or listen to the logic presented. People will say that I'm trying to force you to go Mechanical, well I'm not. I'm trying to save you from further surgeries, but it's still your choice as to which way you want to go."

I hear the logic and I don’t hate you, bud!
In fact I’m very grateful for the work you do here. But I want you guys to know that I understand that both paths have risks and drawbacks. Both paths also have had wonderful outcomes. Aversion to re-op and its attendant difficulties is not to me what it is to other people. You might think I'm nuts for that, but I really want the years after my procedure to be free of restrictions (or have the best chance of that).

If, as Deano89 says, aversion to re-op is the most important factor, we should all be getting mechanical valves, period. Doctors should be installing bio valves only on patients for whom ACT would be dangerous. Everyone else gets mechanical. No freaking out for weeks about valve choice, no balancing pros and cons, just git yer ass in there and you'll be clicking in no time.

Since this is not happening, there must be a fair degree of confidence from both docs and patients to warrant the continued development and indeed use of tissue valves. New additives which might mitigate calcification are a promising direction, of course, and new shapes and materials are also being explored.

And it seems very few have mentioned the good outcomes on bio valves, which is what I tend to focus on. There are lots of folks out there with tissue valves older than 10 years and many with 15+. There are also horror stories of patients on ACT.

Now, it could be that the tissue patients on this forum who are happy with their outcomes are just saying that. I have to doubt it though. I think, like y’all have been telling me all along, that it’s a personal decision fraught with difficulty and uncertainty but based more on one’s individuality than logic.

And the thing is, the real bitch of it, is that I may very well go with a mech. valve myself! I mean, my doc may give me no choice or I might simply change my mind last minute. I can’t be sure. I'm fickle. Sue me!

This is why I keep harping, on and on and over and over again, about single-malt Scotch!

Heidi has been lurking in the significant others forum but there's not much happening there. I notice she's a lot more able to deal with her end of this than I am with mine, so I suppose that makes me a bit of a wimp! Still, she's endlessly patient and taking damn good care of me. I am bloody lucky and that's a fact.

Anyway, I am contacting my Cardiologist tomorrow and I'll try to get him to elaborate on his opinion of my options. I'm also getting in touch with a guy who had an AVR at the hospital near me that I'm considering. They do about four to six a week between 3 surgeons and they've been at it since the new cardiac center opened in 2002.

Do those seem like promising stats to you guys? I was told a guy whose done over a hundred is a fairly safe bet. I don't think any of them do the Ross and for that (Assuming I take THAT risk) I'd have to go to Boston or NYC.

thanks all

David

 

[Jay]

Hello David- Nice job vocalizing the perspective of being on the fence. I'm a fencer 10 days away from first meeting with surgeon. 51 year old BAV, kinda big aorta. I actually wondered the same thing - isn't there some nice data base to look at the pros and cons. One where we could click on "sort". I do really get what you said about being a "patient". I've been a lower case patient , but wonder if I will feel more a PATIENT in big letters, if I have even more regular checkups. I'm interested in learning more about the ROSS too, but wonder ifthat is for folks younger than me. Goodluck withthe decision. -Jay

 

[Cameron]

Dave,
I am a 56 year old male who will be getting an On-X mechanical in the aortic valve this Friday 9th (I hope). Being a world class couch potato, and having become a glass half full guy from a dyed in the wool glass half empty guy before diagnosis, I have no great concerns about ACT and, although I seem to be handling the whole operation thing fairly well, my wifey is having a difficult time. I can't see putting her through this again if I don't have to.
I chose On-X because the guy who designed it has had a hand in almost all successful mech valves and, in my new half full approach, I have to think that he has sucessfully loaded in to this one all that he has learned from the previous ones. I also like the idea that the On-X valve may allow a reduced or non ACT regime, however, even if that proves optimistic I have to think that the On-X characteristics give a wider margin for error on the clot side of the INR.
No one knows what will befall each of us on the other side of the mountain and the choice of valve is a very personal one. Just remember that ANYTHING you choose is better than what you have now, and be glad that your condition was diagnosed and is moving you to a solution that will make your life better.
Good luck with the decision and the surgery,
Cameron

 

[Karlynn]

The restrictions for any valve type are based specifically on that person's own health or their own perception of their health. I don't know of any restrictions for any type of valve. Just take a look at our active lifestyles forum and you'll see people with all different valve types pushing themselves to physical limits with success. Someone recently asked about climbing to the Everest base camp and what INR issues there might be. Apparently, any issues are not insurmountable because a Swiss woman with a St. Jude mechanical summited Everest in 2007.

Any restrictions I have on my activity or diet are not due to my St. Jude valve or the fact that I take Coumadin. I was left with some permanent damage from having to wait for my VR (because it was done so many years ago, they didn't get in there until they saw signs of damage.) So any limitations are due to that or just an occasional lazy attitude.

 

[Lynlw]

Anyway, I am contacting my Cardiologist tomorrow and I'll try to get him to elaborate on his opinion of my options. I'm also getting in touch with a guy who had an AVR at the hospital near me that I'm considering. They do about four to six a week between 3 surgeons and they've been at it since the new cardiac center opened in 2002.

Do those seem like promising stats to you guys? I was told a guy whose done over a hundred is a fairly safe bet. I don't think any of them do the Ross and for that (Assuming I take THAT risk) I'd have to go to Boston or NYC.

thanks all

David


Are you talking about 3-6 valve surgeries a week or heart surgeries? so each surg does 1-2 valve surgeries each week? FWIW Cleveland does the very most and they did over 2000 valve surgeries last year, now there probably are alot of centers close to that, but it was just to give you an idea.
also when you heard someone that did over 100 is a fairly safe bet, I believe they were talking about over 100 ross Procedure and not total valve surgeries. my personal opinion would be to have someone that has done more that 100 total valve surgeries. Of course I have to add, since my son has such a complex heart history, I probably think different than alot of people.

As for the replies you got, I'm not sure but I believe right at this moment there seems to be alot more people who chose mechanical valves that post then tissue, which MIGHT be why you are getting the answers you are

 

[abbanabba]

Hi David, I've just been reading through this with much interest. I guess I was "lucky" that I didn't have to make the choice - I just had my pulmonary valve replaced (10th Dec) and as far as I know, a mechanical just isn't an option for this particular valve (due to the lower pressures on that side of the heart).

If I HAD to choose, I'm not sure which way I'd go, but given how quickly technology is moving along with valve replacements via minimally invasive means, I'm hoping by the time my new bovine valve needs to be replaced, that OHS will be old news. Bearing that in mind, I think I would still go a tissue valve because of the issues OTHERS seem to have with ACT - and also because I really couldn't be bothered with having to monitor and medicate on a daily basis. I'm happy to stick with my annual check-up and leave it at that.

Having also just been through OHS for the second time, I really don't think it was as bad as I was expecting (I really don't remember much from my first - I was only 5). Sure, the hospital stay sucked and I'm still feeling a bit stiff and sore... but I'm sure it's no worse than for those women who've had ceasareans (not that that's something you'd ever have to deal with!) or having a broken limb (I've dislocated a knee three times and the recovery was just as awkward and painful) or a lot of other stuff that can happen to us. In fact, the prospect of having to go through it all again in however many years really doesn't bother me like I thought it might.

But that's my 2c for what it's worth. Either way, I guess it's better than the alternative!

Good luck in reaching a decision you're happy with.


A : )

 

[Ross]

I notice she's a lot more able to deal with her end of this than I am with mine, so I suppose that makes me a bit of a wimp! Still, she's endlessly patient and taking damn good care of me. I am bloody lucky and that's a fact.

Honest to God David, she can mean the difference between making it and not. Mine did! The hospital crew had given up on me and called her and the boys to come back, telling them I wasn't going to make it. My fever had spiked to 106F. Lyn, my wife came in and told them to GET OUT but supply what she needed. ICE, and lots of it. She hand sponged me continuously for I don't know how many hours, got my fever down to 104 and they told her stop to keep from putting me in shock.

The significant other can and does make all the difference in the world.

I tell you my story in case. I pray that it happens to no one else, but everyone should be aware that it is a possiblility during this surgery.

 

[Bryan B]

In response to gadoty1's post, those with bicuspid valves need to be particularly careful when approaching the Ross Procedure, because if they have developing tissue problems that sometimes go along with bicuspid aortic valves, their pulmonary valves are often affected by the same issues as their aortics were, and may be incapable of picking up the burden for long.

The sound of it is that gadoty1 may have myxomatous tissue associated with congenital bicuspid valve disease. The aneurysm is a corroborating problem, sometimes attendant to bicuspid valve disease. It seems that this still happens with some Ross Procedures, so some levels of tissue problems may be difficult to detect, or it's possible that some surgeons may not wish to take the time with the patient on the pump to have the lab make that determination.

It's a risk that should be considered carefully. Not all bicuspid valve owners develop other tissue disporders. For the right patients, the Ross Procedure can be the best of possible worlds. However, a failure means involvement of two valves, rather than one.

Best wishes,

Speaking as a "Ross Procedure" graduate I fully agree with tobagotwo's post. I did not have a bicuspid valve or an aortic aneurysm. I had a congenital VSD that eventually caused aortic insufficiency and aortic valve prolapse due to the "jet" of blood passing through my ventricles via the VSD. Even then I was doing ok until I got endocarditis on my already "funky" aortic valve/leaflets. My pulmonary function was completely normal. So I didn't have any of the issues that might make a surgeon or informed patient hesitant to go through with the RP. My 5th anniversary is a couple of months away and my annual ACHD cardio checkup is January 20th where I will have an echo, have one of the best ACHD cardios in the nation check me out, and then have about a dozen residents and interns file in and listen to my heart.

Duke sends a letter every year with your appointment date about a month ahead of time. One day after the letter arrives is when I start worrying for the next month if everything will check out ok. But I'm happy with the decision I made even if I got bad news eventuallly. Once I finally got my sternum fixed up and dealt with some personal issues I feel more healthy and I know I'm more physically fit than I have been in 15 years. And that is what you are looking for in an outcome regardless of what valve you select...to feel better, have more energy, and feel like your heart problems are not holding you back from leading a normal life. I didn't realize how sedentary I had become due to my deteriorating valve until I got my plumbing reworked and eventually (after recovering) didn't feel like sitting on my ass anymore.

 

[AndyChas]

Hi David

I know what you mean about the vicissitudes of the decision making process, particularly when you stumble across information that suddenly undermines or complicates what had seemed a good (or bearable) choice. In my case valve repair seems more likely than replacement, but one of the most depressing moments I?ve experienced was when a crotchety GP remarked, with typical exasperation, that every one of his patients who had undergone mitral valve repair had required further OHS within two to five years. This flew in the face of just about everything I?d read or been told, but left me with a sinking feeling that it would almost certainly be my fate as well. A month or so later I?m feeling more optimistic, but perhaps I should steer clear of that particular GP!

Andy.

 

[lbecker]

David, I have read with interest the posts. If I remember right you are
replacing the mitral valve? That is the valve I have to have replaced
also. I'm told by the professionals I should go with the mechanical
due to the quotes wear and tear on the mitral valve, yet my gut is
also saying go with the tissue. I also am reading and looking for
any info that will help me make my final decision. Once I have all
the info I want to talk to the surgeon and see what he thinks. Thanks
all for sharing. I know each of us has to make are own decision but
it sure helps to have others share. So glad I found this site.

 

[Lynlw]

David, I have read with interest the posts. If I remember right you are
replacing the mitral valve? That is the valve I have to have replaced
also. I'm told by the professionals I should go with the mechanical
due to the quotes wear and tear on the mitral valve, yet my gut is
also saying go with the tissue. I also am reading and looking for
any info that will help me make my final decision. Once I have all
the info I want to talk to the surgeon and see what he thinks. Thanks
all for sharing. I know each of us has to make are own decision but
it sure helps to have others share. So glad I found this site.

He is getting his aortic valve replaced, since he is considerring the Ross.

 

[Alerion]

Bryan - A lot of us have been looking for some good news re: the Ross Procedure. Glad to hear that you were a good candidate and it's going well for you.

Andy - What the hell is wrong with some of these guys?! So much of a patient's well being depends on the relationship they have with their doc. I still meet lots of docs who don't get that. I have taken to treating my physician as I do my mechanic. If I don't think he has my best interests in mind when we talk, I will absolutely walk out of his office.
My last cardiologist walked into my first and only examination on the cell phone. He held up a finger to indicate that I should wait. He stayed on the phone for 7 minutes by the clock on his wall. He was on the phone with a friend or broker discussing his investments. At 7 minutes, I started getting dressed to leave. He hung up asap and proceeded with my exam without apologizing. Rather, he explained by saying " Big investments" or some BS. He had me schedule another appointment which I never did. I switched docs without even calling his office. I'm not at all impressed by where a person went to school - I've met waaaay too many Ivy League morons. I can only get comfortable with a doc if I can feel he/she has a great record, is taking me seriously and has some degree of empathy for my situation.
If I could have Heidi's gynecologist, I'd be ecstatic. He's a great guy who listens and empathizes and reassures his patients that he's a part of their emotional landscape. For a Pap smear, that's no big deal - For a hysterectomy, it's invaluable.

lbecker - Lyn's right . It's my aortic valve that won't behave.

 

[Herburban1]

That Gremlin was an AMC not GMC. Come on GM has enough troubles now. That and the Pacer 2 AMC (Rambler) classics.

 

[BDMc]

David, I'm too familiar with St. Luke's, St. Anne's, and Charlton. I would not recommend any of them. I think Brigham and Women's is worth the trip! As far as choice goes, the others have given you good advice. If monitoring your INR is your big concern, I can't judge that for you, and respect whatever choice you make. As to the stats, maybe they'll help, but consider me: valve recalled within 3 months after my surgery. The stats say expected lifespan for the valve is 13 years. I'm at 24+ and the valve still appears to be in great shape. I live in Newton, but am in Westport regularly. I sail beachcats from Gooseberry, and frequent Barney's Joy, Cuttyhunk, and Quick's Hole. Perhaps we've crossed paths on the bay or the sound? My favorite mono is the Sakonnet 23, but if I had the time to sail it, I sure would love one of those sexy Alerions! PM me if you ever want to talk, and I'll send you my number. I think it is great that you have a choice, and that you take it so seriously! Brian

 

[Alerion]

Herb - AHH! it was AMC! I was a kid when I got that thing. I forgot AMC even existed. Biggest blind spot in automotive history on that thing. God that was a lousy car!

Brian - I spent a lot of time as an acct manager for a Pharmacy company and got to know a ton of docs and nurses, admins and D.O.N.s all over the Boston area, so my first reaction was to check B&W or M.G.
But I have been hearing a lot of good stuff about Charlton, specifically about Dr.s Carr and Campos. My intention is to meet with them and keep my options open for B&W and Dr Cohn. What have you heard about Charlton? If you'd rather respond privately, that's ok.
The Sakonnet is gorgeous and built locally - two pluses! But if I had the scratch, I'd grab one of Alerion's big sisters, the Buzzards Bay 25 - boat porn for the true enthusiast! They're really fast, really able, incredibly beautiful and even at anchor, look as though they're crossing a finish line.

 

[Bina]

Yes, the Gremlin and Hornet seemed to be huge mistakes, but AMC more than made up for those with the earlier production of the 2 seater AMX (my dream car) and the Javelin.

 

[Freddie]

I thought this thread was about valve choice?
Well in any case, my dad used to have a 4-door light blue Rambler and I too had a BIG honken AMC.....I think it was called a Matador.