32 yo wife needs new valve, 1st post

[thecman321]

I am new to this site, and have found it a great source. I have been doing alot of reading and research this past month after finding out that my wife needs a new aortic valve. She has a congenital heart syndrome which involves subaortic stenosis, and aortic coarctation,, both of which were corrected surgically when she was a child. She has been symptom free until recently when she has become more fatigued. A MRA was done this past summer and it was discovered that her known regurge was much more severe than previously picked up with 2d echos which she had been having done annually. Her cardiologist says that her heart was working way too hard and set up a surgical consult which we had done this past week. The cardiologist suggested that a bovine valve may be the way to go since he had been impressed at their durability. The surgeon said that due to her age a tissure valve would not last more than 10 years and that he wasn't crazy about the idea of her needing a reop sionce that would be her 4th heart surgery!! He reccomended the st.jude's mechanical, and thus a life long coumadin therapy. My wife in was devistated by the possibility of having to alter her acive lifestyle so much as a result of coumadin. The surgeon still says that the decision is still hers to make. My wife and i are not planning on haveing any more children due to her heart condition. We are blessed with a 6 month old girl who is absolutely the best baby in the world!!!
Anyone out there with some similar experiences or words of advice?
Anyone out there familiar with this heart MRI/MRA that my wife had done?
Tissue vs mechanical experience?

thanks

from

the worried hubby

ps GO SOX

 

[PapaHappyStar]

Hi,

I would get a few more opinions and search some more -- there are valve repair options for pure regurgitation that might involve a less invasive incision -- here is a link to my post about an article on the management of aortic valve disease by a famous valve surgeon in Canada ( Tyrone David ):

http://www.valvereplacement.com/forums/showthread.php?p=97031#post97031

I had an MRI done recently, they told me it was possible to measure jet velocities and eccentricities similar to an echo with MRI and to see structure in tissue as well I believe -- but I have yet to see a report ( I have images ) -- will post on this once I have the report.

Burair

 

[Tom F.]

While this may not be an option due to her other surgeries, given her young age I would also look into whether a Ross Procedure would be available for your wife.

 

[Phyllis]

I notice that you are in MA. I don't know who you consulted with, but Dick had his aortic valve replaced last year at Brigham and Women's hospital and used Dr. Patrick O'Gara as a cardiologist and Dr. Lawrence Cohn as a surgeon- can't say enough about how great they both were - if you are in the Boston area, it might be worth a consultation.

 

[bvdr]

Welcome to this forum. As you know, we have many spouses and family members of valve patients here as well as those who have valve problems themselves. It is always difficult to learn that a heart problem has reached the point that surgery is recommended and making the necessary choices can be difficult. There are so many choices now available and I don't think there are any real bad ones. A fourth surgery doesn't sound good to me though as each surgery becomes more difficult. No one would really choose to be on coumadin if it could be avoided but it isn't nearly as intrusive into one's life as it may seem looking at it from the outside. My everyday life has changed very little with the addition of coumadin and I am satisfied with my St. Jude mechanical mitral valve. It is good to keep in mind too that sometimes even with a bio-valve coumadin becomes necessary because arrhythmias sometimes occur as a permanent by-product of valve surgery itself.

There are several here who have undergone multiple surgeries and I'm sure they will chime in before long.

Congratulations on your baby daughter. I have a five month old little granddaughter that melts my heart. I imagine it must have been a little difficult to determine that the source of her fatigue was other than the arrival of your bundle of joy.

 

[Raverlaw]

Cman-

Welcome to VR. You will find it to be a wonderful resource. Be sure your wife gets to read some of the posts here, as well.

I've got a mechanical St. Jude's AV and will be on warfarin (Coumadin) forever, unless some new therapy is developed.

The valve works great and I am so glad that it won't wear out like a tissue valve. I find warfarin therapy not to be so bad at all; it doesn't really affect my lifestyle in any significant way, and I am a pretty active guy.

A 4th surgery sounds like something to stay away from, in my humble opinion. Each time she goes in there are certain risks, and the surgery gets more difficult with more scar tissue, etc. By all means look into the possibility of repair or minimally invasive surgery, too.

You will find loads of information and links here. Have your wife read it all and make the decision that suits her preferences the best. Good luck to you both.

 

[momshell7]

Husband has tissue valve

Husband has tissue valve

Hi, Welcome to the forum! You have joint a wonderful family! I can only speak from the experience that I have had but I think the stentless porcine valve is worth checking into. My husband had his surgery last monday and that is the valve his surgeon used. He discribed it as the Mercedes of valves. He told us it is the best one currently available. It is though a personal choice that you wife will have to make. The best thing you can do is research the different valves and weight the pros and cons at they apply to her. My husband does not look forward to another surgery, this was his second, but with all the medical advances being made, we are hoping the next may not be as invasive. If you have any questions please don't hesitate to ask. There are alway people who have experienced the same things and can give you advice. Everyone here is great!!


Again welcome to the forum!
Michelle

 

[Ross]

While this thread is actually in the proper spot, I'm sending it to valve selection for broader coverage of options.

 

[ALCapshaw2]

IF you have the luxury of a little time, I recommend that you do a lot more research and maybe even interview several surgeons who have a LOT of experience with the options of interest.

IF your wife is a viable candidate, the ROSS Procedure offers a long term solution that USUALLY does not require Coumadin.

The Bovine Pericardial valves are highly regarded at the Cleveland Clinic which is the #1 rated Heart Hospital. You can also get a second opinion from Cleveland Clinic via their web site.

Another Mechanical valve you may find interesting is the ON-X (do a search here on VR.com for links to their website and considerable discussion). The ON-X valve is a 4th generation mechanical valve which incorporates principles of fluid dynamics for better flow characteristics with less turbulence (i.e. less chance of producing clots). There was even some consideration of doing a study to see if aspirin therapy might be enough without the necessity of Coumadin. IF /when that ever comes about will probably be a LONG time, BUT, it may be possible to get by with a Lower INR for an ON-X valve vs. the standard St. Jude Valve. St. Jude also has an improved mechanical valve so there are a lot of options to look into.

I think it would be wise to include your wife in the research and to have her browse the VR.com Forums, just for the comraderie (sp?) if nothing else.

ALL valves are life saving and life extending. When given the choice, many of us choose the one whose negative aspects we feel we can best live with and which best fits our lifestyle.

Best wishes in your quest for the best valve for HER.

'AL'

 

[geebee]

Deciding on what valve can be confusing. I did not have a choice the first time I had OHS so you and your wife are ahead of the game a bit.
Obviously there is so much information out there that, if you take the time to peruse, you can make a choice (along with the doctors) that best fits your situation.
I think the one thing to keep in mind that each time a person has OHS it makes the next time (when necessary) more risky. Scar tissue builds up and makes entry more difficult. I had so much scar tissue even after my first surgery that, while gaining entry during the second, the surgeon actually cut the pulmunary artery trying to clear the scar tissue. I was luck to make it through. I mention this because you said your wife has already had multiple surgeries so I am sure there is significant scar tissue already.
You should consider the path that will result in the least amount of surgery in her future. I have a mechanical valve and have been on Coumadin for 24 years. I have not found it to be an issue (except when I am clumsy). My levels have been very stable and I am not very affected by food or other medicines. There are some horror stories out there about Coumadin but there are many people who live perfectly normal (?) lives on it.
Obviously talking with the cardio and surgeon will help you to make decisions. VR.com is an excellent help forum as well as just a place for comfort and venting. Please stay in touch.
I wish you and your wife well.
Smiles,
Gina

 

[KathyH]

Sorry to hear that your wife needs OHS again. Everyone has a different opinion on what kind of valve is the best . I am 50 and had my AV replaced 6 months ago with a ST Jude. Dr Lawrence Cohn thought it was the best one for me so I went with it. I have not made any big changes in how I live my life, except that I wear a Medicalert braclet, and I keep my diet consistant. When I first started riding my bike, the thought did cross my mind, what if.... I am not going to live like that.
Kathy H.

 

[Karlynn]

C,
I'm glad you took the leap and posted. I told you lots of people would be right there for you. (Just what you need, another woman telling you "told you so").

 

[PapaHappyStar]

I just got a preliminary MRI report -- they have independently measured the gradient across the aortic valve and the hemodynamics in the left heart and its outflow tract. The MRI also shows the morphology of the valve quite clearly although I dont know if it is much better than the ultrasound ( echo ). The MRA would definitely help with identifying coarctation.

I am going to regale you with a slice view of my bicuspid valve:

 

[Dirk]

Interesting Images!

Dirk

 

[PapaHappyStar]

Interesting Images!

They are that. They do claim to be able to make out aortic valve leaflets and the images from this paper appear very detailed:

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&dopt=Abstract&list_uids=20018069

I have to admit that I dont really know what the slice below really is... I think thats the aortic valve

Burair

 

[PapaHappyStar]

More on MRI/MRA

More on MRI/MRA

Check out this link:

http://heartdisease.about.com/library/weekly/aa123101a.htm

 

[Marty]

Worried hubbie, my opinion.....go St. Jude.

 

[thecman321]

thanks

thanks

thanks to all who haave posted
It makes me feel like we are not alone
and that many people have successfully gone through this hurdle in there lives and continue to lead normal lives.
i will try to get my wife to post as well

C

 

[danielgilboa]

Hi C,

I got my brand new st jude 6 months ago and am on coumadine since.
I am 45 therefore my surgeon strongly recommended the mechanical, as he said, he likes me but does not want to be seeing me again in 10 years.

The best solution is a repair ONLY if they are certain they can do a good job. My valve was a wreck so it was not an option.

The mechanical st jude clicks, but having it, rather than a "temporary" tissue valve or questinable repair gives me lots of confidence and peace of mind. I am on coumadine for 6 months now, nothing compair to lifetime, but it did not change my life style. The only thing is remembering to take the stuff and get a INR test every now and then. If you get a home tester the whole thing doesn't take you too far out of your way.

To me, getting your heart to work normaly and avoiding additional surgery are the most important considerations. I would therefore go for the safe alternative which seems to be the mechanical.

OHS is not new to your wife but it is tough anyway. I think she will gain lots of support by getting on the list. Hope you can talk her in to it.

Daniel

 

[Gisele]

Dear Cman

Dear Cman

I had my valve replaced twice at NEMC. The first one was when I was 26 and the surgery was to replace my mitral valve with a mechanical valve. Last Nov. at age 47 (due to complications with Coumadin) my mechanical was replaced with a bovine valve. Please rest assured that most patients do not have as much as a hard time that I have had. I would seriously consider going with the mechanical and taking the Coumadin.

Everyone is different and you will find a lot of useful information by reading these posts. If you have any questions please feel free to send me a private message or post on this board.

Gisele