I am in need of a double valve replacement

[breakofdawn2000]

Hello to you all,

I am new to this forum and found it when I was doing some research on the net and came across this site posted by someone in Cleveland Heart forum.
I have recently been told I have Severe Aortic Insufficiency and Severe Mitral Regurgitation and have been frantically trying to find someone else who has had these valves replaced...
I am 41 yrs old and have been told the mechanical valves are the way to go because of my age and that the Tissue replacement valves do not last as long....however I am not sure I want to be on Coumadin for the rest of my life. ?
I have been reading a whole bunch of different posts and it seems a few people are unhappy with the clicking after the mechanicals are put in.?

I also have Mild Tricuspid Regurgitation ? What does that mean ?
Does that mean that valve will eventually get worse..?

I am petrified of the surgery and have also been told by my cardioligist that
minimal invasive could be a way to go for me...because of the huge scar the regular surgery involves however when I asked one surgeon about this he felt it would be RISKY for me to go this route..?

As you can see I am very confused...I found that I had leaky valves 4 weeks ago so it is a huge shock.

Supposedly I had Rheumatic Fever when I was younger....I had strep a lot and a Tonsillectomy when I was 8yrs old other than that I have no recollection of having Rheumatic Fever..!

If anyone can tell me if they have had a double valve replacement and what type of surgeries they looked into or what is available out there?

I live in the Tampa Bay Area in Florida and have been looking into surgeons also. If anyone has used anyone in this area and where very happy with them I would appreciate that info too.

 

[Ross]

Hello again

First off, take a big deep breath and exhale. Your amongst friends here that truly understand how terrified you are. Try to relax.

Next, I'm for anything that is going to keep you off the operating table again, which would mean mechanical valves. At first the clicking can be a nuisance, but you soon get used to it and don't really even hear it. Of course, it's your choice when it comes to valves, but if you consider mechanical, please see our resident pharmacist and anticoagulation expert, Al Lodowick's site at www.warfarinfo.com and include a REAL education on the Coumadin matter. This will dispel a large number of myths surrounding the drug and it's use. It really isn't a big bad monster, like most people and some medical professionals make it sound.

Johnny Stephens is a "Double clicker" and I'm sure you could ask him anything. He doesn't swing in too often anymore, so maybe shoot him a private message. There are others, but I can't think of any at the moment besides ILoveNY25. She is very young (23)? and has had both of hers replaced also.

How close are you to the Cleveland Clinic Florida campus? I'm not real sure what great hospitals there are in FL, so perhaps others will chime in. You want to find a surgeon that does lots of these in a month and an equally decent facility as well.

Once again, welcome and we'll walk you through all of this from beginning to end, with full understanding.

You may want to see the main page and click on stories. There are about 5 or 6 people that have had both replaced and you can read their stories. http://www.valvereplacement.com/

 

[Cooker]

Hello And Welcome!!,

You have come to the right place!! I don't have much to add... I agree with all that Ross said. "Cork" is a double valver and I think he is around 30. This is a great place for info and support. All will be well.

Welcome to our club................Cooker

 

[Nancy]

My husband, Joe, has two mechanical valves due to rheumatic heart disease. His were implanted several years from each other, but there are folks on this site who have had both valves replaced at once.

The mild tricuspid valve problem is probably something they will just watch. It may or may not develop into anything. Joe has a severely leaking tricuspid and no operations for him at this time. Mild regurg. is something that is well-- MILD. Replacement isn't usually done unless it gets much worse than that. But your own card. is the one to discuss this with, in your own particular situation.

This surgery is highly perfected and the surgeons who do it are experts in what they do. They are into and out of hearts all day long, all year long.

As far as the type of valve--well, there are many debates about what are the right valves to get. However, when one is faced with a double valve replacement, then you might want to strongly consider mechanical. Repeated heart surgeries leave scar tissue and even adhesions aferwards. So if you were to get tissue valves, and one of them failed in the future and had to be replaced, but the other was doing just fine, you would still be facing another valve surgery to replace the "just fine" one when its time came, since it is a given that tissue valves will have to be replaced sooner or later.

I'm not sure how minimally invasive surgery (through the side) would work with a double valve replacement. Joe had to have his mitral repaired (third valve surgery) and he had the HeartPort method through the side. It was fine for that situation, but double replacements--well, I just don't know.

 

[Perrster]

Another double-clicker here...

Another double-clicker here...

Hello, breakofdawn2000.

I am also one of a few "double-clickers" around here. My story is in the "member's stories" section. Anyway, I just wanted to mention that I'm over 6 years post surgery and although I'm stuck with Warfarin and a few other drugs for the rest of my life, life is pretty good and I personally think I'm as healthy as a 30 yr.old! Just recently my Cardio said I was so boring (nothing wrong) he didn't need to see me for a year. It will take some work, but it can be done. It took a year to really get better after surgery, so don't rush it. As long as you've got a good support network (including your MD's) the journey will go that much quicker. Best of luck.

Sincerely,

Perry Anderson

 

[bvdr]

Hi "Dawn",
Welcome to our site. There are quite a few of us who had gone undiagnosed with Rheumatic fever and then found out about it only when our heart valves started failing. Lorraine is also another double-clicker and I'm sure there are quite a few others as well. I know we have had members who had their valves replaced in Sarasota Memorial and a couple in Tampa(General?) hospital.

As far as your tri-cuspid valve is concerned. It is not unusual for it to be leaking a little in anyone. If it is leaking quite a bit there is a procedure for repairing it with a ring that is sometimes done at the time of valve replacement. Quite often though the leaking is a result of failing mitral and aortic valves and the leaking actually becomes less one the rest of the heart of functioning better. I had all my valves affected by RF(rheumatic fever) but only the mitral valve needed to be replaced. Someday the aortic may need to be as well but hopefully far into the future. I had the heartport procedure for the mitral replacement but I don't think it can be used for a double replacement...in fact, I doubt it. The positioning would be awkward for a surgeon.

Mechanical vs bioprosthetic? That is a big debate around here. It seems most are happy with whatever route they choose. I'm personally for hoping for as few surgeries as possible. Coumadin is very manageable and things get a little complicated sometimes when other surgeries come along but by being well educated about how the drug works helps immensely.Being on coumadin requires lifetime monitoring and many of us do our own testing at home which helps us keep our blood in an effective zone.

I do encourage you to start a file and get copies of every test report, consultation reports, and anything you can to do with your health. There are times you need to be your own advocate and the better educated you are about your condition then the better prepared you will be. It isn't all that hard. It comes little by little and one day you will have it. Take this file with you whenever you have a doctor's appointment especially with a physician who is new to you. It saves so much time!

I do want you to feel welcome around here. It is a great support site with people who really do understand what you are going through right now.

 

[bvdr]

Our member "Carlapy" also had a double valve replacement.

 

[temp69]

I second Ross's opinion, relax, take a deep breath and know that you've come to the right place for support. I'm only 5 weeks post op and feeling pretty good, not perfect, but on the mend.

As for the "noise" of mechanical valves, you can def. hear them, but it's not like someone will be able to hear you sneaking up on them.

My cardiologists all say that you get used to it, like anything else.

Good luck!

 

[Kathleen]

Doubles

Doubles

My aortic and mitral valves are 21 years old. Had them put in when I was 35 years old. My tricuspid has mild regurgitation to. Mine are both St Judes mechanicals. I also had undiagnosed rheumatic fever possibly from my younger brother who had it and was very ill. He is fine now. I have had some issues with coumadin and have tackled those. I have had four open heart surgeries and one lung surgery. I am glad I chose the mechanical valves since redoing it during the other surgeries would have been an added risk.
Kathleen

 

[sylviayasgur]

hi,
welcome to this site; it's a great place for support and info. and comfort.
you sound like you are in a semi-state of shock at the new news. we can all relate. try to relax and just keep coming back. it really helped me a lot.

my husband is the patient here(ross procedure), but my dad is also a valver. in fact, my dad has a mechanical st.jude's aortic valve and takes coumadin.

he just found out that his mitral and tricuspid valves are leaking and need to be replaced/repaired.
he consulted with dr. colvin, in nyc, who specializes in minimally invasive surgery and he is planning to repair both valves simultaneously.
dr. colvin said that he could do this and my dad is thrilled. i think he's planning on scheduling the surgery for after sept.9th (reception in ny for my brother who just got married in ireland and his new wife).

i don't know if they can do a replacement through a minimal surgery, but dr. colvin said that he has repaired multiples this way. also, i 'm not sure about the mitral and aortic at the same time. there are some folks here from fla., but i'm not sure which are the ones from your area. maybe they will come forward and recommend medical facilities (and md's) where you might have the surgery done.

wishing you all the best.
be well,
sylvia

 

[Deuce]

Hey there "breakofdawn2000",
I am also a dualvalver .So is Sue943 . As you can see there are quite a few of us.
I don't have much to add .Nancy,Ross,Bvdr,cooker and Perry have already provided some excellent insight into your situation. I especially like Ross' advice to "breath" and "try to relax".
Take some time and review some of the posts on this site and before you know it your anxieties will diminish.
My tricuspid valve was "mod/severe" and the surgeon wasn't concerned because like BVDR said ,once the other valves are fixed/replaced the tricuspid should "correct" itself. Mine is currently classified as "Moderately Regurgitant, so it has improved some.
Are you having symptoms?? Unless you are having symptoms or experiencing some heart enlargement You may actually be years away from surgery.I was diagnosed in December of '03 but didn't have surgery until Feb '06. I was very active(still am !) and didn't have any noticeable symptoms...other than denial !!
Do you exercise ??I would recommend that you get in the best physical condition possible prior to surgery. It makes the recovery much easier.
Once again ...relax...everything is going to be OK.
Tim

 

[Karlynn]

Welcome! I know you must be very shocked and very afraid right now. I'm also thinking that with 2 pretty bad valves you will probably feel a whole lot better once you've had the surgery and have recovered for a while. I'm guessing that your body has slowly compensated and tricked you into thinking your physical functioning is pretty good. I'm also guessing you'll feel like a new, younger person after all is said and done.

A few of us that are long-time Coumadin (warfarin) users put this little post together as a short glance at some of the most asked questions and issues revolving around the drug. I encourage you to take a look at it. http://valvereplacement.com/forums/showthread.php?t=17116

Best wishes!

 

[ALCapshaw2]

Welcome B.O.D.

You can get to the main page by clicking on the yellow ValveReplacement.com symbol at the top of the page. Then click on STORIES and scroll down to the TWO VALVES section for more information.

There are a couple (or more) good Heart Hospitals in Florida. It seems that a few of our members hold Schaad's (that's not spelled right) in high regard.
I was unable to find it in a quick SEARCH effort.
Look through the Active Lifestyles Forum for some of our Florida members who are runners. One or two of them went there. The Florida campus of the Cleveland Clinic should also be a good facility. You definitely want to go to a Surgeon and Facility that has a LOT of experience with double valve surgeries.

I suspect that most surgeons will want a Full Sternum Cut to do a double replacement to give them better access. While it is a longer cut and scar, there is virtually no pain from it and in fact probably less pain than the alternatives (minimally invasive or side entry). And there is a LOT to be said for giving the surgeon full access to see and do whatever needs to be done!

Note that first time surgeries for patients under age 60 have VERY LOW Morbidity and Mortality numbers, typically 1% death and 1% stroke risk when performed by an experienced surgeon at a high volume hospital. This is WAY BETTER than the risks for doing "nothing"!

You may want to look over the Valve Selection Forum. For what it's worth, my first choice (in my 50's) was for a Bovine Pericardial Tissue Valve. It wasn't a good choice given other factors and I received a standard St. Jude's Mechanical Valve. If I were to do it over, I would give serious consideration to the new (third generation) valves such as On-X, ATS, St. Jude Regent, which have improved fluid dynamic designs to reduce turbulence and clot formation. There is the hope that they will eventually be approved for lower anticoagulation levels or even aspirin-only therapy. Studies are currently under way to examine these possibilities.

Most of us don't hear our valves except under certain circumstances such as holding a deep breath, or in a quiet room with hard surfaces (i.e. tile bathrooms, etc). or in certain positions (laying on one side or the other).

Look around some more and feel free to ask any questions that come to mind. Most people choose the valve that seems to best fit their life circumstances. Just be sure to make a 'second choice' in case the first choice is not viable!

Best wishes,

'AL Capshaw'

 

[EVELYN]

Hi Breakofdawn

The Rossman, as I call him, is ABSOLUTELY RIGHT!!! Take a deep breath and relax. You have come to a wonderful site where you can feel free to ask any questions, address any fears and even fall apart if you need to. We will be here to get you and your family through this.

I'm Evelyn....hubby Tyce had AVR in '02. He has a St. Jude's and personally when and if I hear the ticking, I rather like it....sort of comforting, you know!

I can't help you with double valves, but I sure can help you with support. I certainly would suggest going back through the old threads and checking things out here.....it's a great place.

Good luck with your decisions and know that these are done all the time. The most important thing is to get a great surgeon who does lots and lots of surgeries.

Please keep us posted and welcome home.

Evelyn

 

[Georgia]

Welcome to the forum! I know it's an awful shock to find out you have to redefine yourself when you haven't had any idea that you're in trouble. The idea doesn't exactly grow on you, but you do get to the point where you can start organizing your thoughts again.

Feel free to ask all you want.

 

[Mb]

My husband is also a double valver. I believe that if your mitral valve cannot be repaired, then you have to go mechanical, as the tissue valves do not fair well in this position. My husband had is aortic and mitral valves replaced almost 5 years ago, St. Jude mechanicals. In the right set of circumstances, yes you can hear the valves. Soft soft clicking sound. Rheumatic fever as well.

He has a severely leaking tricuspid valve, and it has been leaking severely for some time now. He also needs a pacemaker at this time, so ordinarily they would not do anything with the tricuspid valve, but since the lead has to be placed through that valve, they are going to repair it at the same time....some time soon. However, a mild or moderate leaking tricuspid valve generally will improve once the other two valves are taken care of.

We live in Massachusetts, so his surgery was done at Mass General. Cannot help you with the Florida recommendation. It also took him about a year to recover. But he also has chronic a-fib, so his situation is a lot worse than yours, and yet he lives a fairly full life.

Wishing you God's peace on this new journey.

Marybeth

 

[Liz]

Welcome!

Welcome!

I am so glad you found this site - there is a weath of practical information here and wonderful emotional support. I don't have experience with the double valve situation so I can't add anything there. I can relate to your experience of the shock of diagnosis though. I went in for a physical in Jan 2006 at my husband's insistence because I had been feeling unusually tired for months. The doc heard a murmur, referred me for an echocardiogram, and the rest is history. The cardiologist thought my regurgitation was due to hereditary degenerative disease, but when they opened me up the surgeon found that I had been born with a congenital cleft - my mitral valve hadn't developed all the way in utero. So I went from thinking that I was perfectly healthy although more tired than usual, to thinking that I had a hereditary degenerative disease, to finding out that I had a congenital heart problem that had been with me my whole life and if it had been discovered in childhood (or any time after that) I would have been referred for surgery at that point. So I can really sympathize with what you are going through in terms of trying to digest new information about your body and health history.

Keep asking your questions here and of your doctors and you'll find your way through this even though it all feels pretty overwhelming right now. If you don't get a lot of replies with suggestions for surgeons/hospitals, you can always start another thread with the specific title of "Looking for surgeon in Florida" or something like that and that might bring in some more responses.

Sending you a big hug!
Liz

 

[sue943]

Yes, another double-valver checking in. Mine are ATS and very quiet. You should be able to find lots of information here to help you.

 

[John & Joann]

Joann has double valves since 1971. Also has a pacemaker and 3 bypass done during the second surgery.

Joann can provide a lot of information to help you. Your situation can be treated with success.

We will send a pm regarding other information.

 

[geebee]

Welcome to our home.
I also had undiagnosed RF and no knowledge of needing antibiotics for dental procedures until it was all too late. I am lucky that only my mitral valve tanked and the rest of the valves seem okay. I am sure you are in shock over the news and need to do your homework to be comfortable and make sure you get the care you deserve.
You have found the best place in the world to get help and support. Please let us know how we can help you through.