Newly diagnosed

[tobagotwo]

I had a Mosaic tissue valve installed on the 6th. I agree in principle with your husband's assessment. I've worked briefly with sheet metal before. I think glass is much safer.

However, the afib is a major consideration. If it can't be dealt with, it makes absolutely no sense to go with a tissue valve, as he will likely be put on Coumadin anyway. A mechanical valve is generally a permanent solution, wherin lies its charm. If you're on the Coumadin anyway, you may as well reap that one, big benefit from it. A tissue valve in your fifties or below has to be looked upon as a temporary solution.

Coumadin has widely varied effects on people, and many here have dealt with it quite successfully. Each choice has percentages associated with it. One good, recent thread is "Anecdotal Observances," which is elsewhere in this forum. There are other good threads here, of course, and many of us are only too happy to put in our two cents' worth if you start your own (which you have).

I would not avoid the threads on living with Coumadin, as you will get a much truer picture from those here who use it than you will ever get from a doctor. Some see it as a discipline, some as no problem at all, and some as a burden, but at least your understanding will not be from a brochure.

I have had an almost embarrassingly easy time (so far) with this surgery compared to most, although I'm certainly not ready to do it again for another fifteen years or so. My story is similar to your husband's, inthat I am 51, and my only issue was the valve. It wasn't bicuspid, but was so badly fused with calcium that the catheterization cardio was willing to make bets on it.

If he is normally a vigorous man, and doesn't have many side issues, he may fare very well also through surgery. I sincerely hope that he does.

 

[Bryan B]

Carla,

Like I said before I was lucky enough to be a perfect candidate for the Ross Procedure, and if I had it to do over again I would choose the Ross again. My 2nd choice if my surgeon decided he couldn't do the Ross was the pericardial bovine tissue valve. If I had that choice to make again (having the knowledge of what the surgery involves), I think I may have switched to a mechanical valve. I'm not sure why, because the surgery was not nearly as bad as I thought it would be. But after having the luxuray of hindsight, I think I would pick the "longest lasting" valve possible. Just my 2 cents.

 

[bvdr]

Carlasue,

If you look at the back posts under valve choice you will find a poll about how people feel about their valve choices. Lots of reading around here, isn't there?

 

[Granbonny]

Hi Carlasue

Hi Carlasue

Don't we have a great group here? they are the best... I am age 63..Had my VR. at age 61...Only had a three day wait..Surgeon told my family. I will put in a Mech. Valve. At her age, she doesn't want a repeat in a few years...Thank Goodness. Everything was great. Never remember anything about surgery. They keep you full of good meds..right before surgery and after. And pain meds to take home with you...4-5 days in hospital...Home..and try to be ready for his homecoming. A nice recliner..Lots of good things to drink..food stinks for a few weeks. ..He will not feel like doing much for at least 6 weeks..Then when he goes back to work..Not to lift anything heavy. It takes a long time to heal those bones, cells, muscles, ect.......My family was a great help, driving me to doctor appointments, ect. post-op.. Do you work? If so, will you be able to take time off. He needs someone at home with him for at least 2 weeks.... If he chooses to go with a tissue valve..Remember you will be older, too. When he needs this surgery again...Coumadin is no problem for me. Never bleed or bruise. I have the home-tester. so do not have to go to coumadin clinic. Just call in my INR every 3-4 weeks...Takes a few weeks on the coumadin pill to find his mg..that will keep him in range.We will put your Hubby on our calendar (Look at top of forum and click on) Keep posting and we will get yall thru this. Bonnie

 

[bethanne]

Hi carlasue,
I am still in the waiting room so I have time to make a decision regarding valve choice. I personally am leaning towards the mechanical valve myself, mostly because I want to minimize any possiblity of having a second surgery. But I am leaving myself open to what my surgeon may recommend, when it nears the time. I have it in my mind that each surgeon may develop a preference for a certain valve. When I pick a surgeon I plan to ask him if there is one that he prefers to use for experience factor, etc.

The good news is there are alot of good choices... The bad news is we do have to make one!

Glad you found us and no questions is too small or silly... ask away!

 

[carlasue]

You all are right--making the valve decision is tough and we still have not done it! Surgery is just a few days away.
I guess what I wonder the most about is what happens when a valve fails--is it sudden or is it a gradual thing and what are the implications for the individual?
Also, does any one know for sure how long a mechanical valve should last? Hubby's parents are still alive in their 80's. If hubby has a mechanical valve now (at age 50) that lasts 25 years and he is otherwise still healthy at the then age of 75, wouldn't it be very difficult to have surgery at 75? If he gets a tissue valve now that lasts, hopefully, 10-15 years he would be in better shape at 60-65 years of age for the second time around. I guess what I mean is can a mechancial valve be expected to last a lifetime if you are blessed to live a long time? And if not, if you have to have two valves in your lifetime, wouldn't it be better to have suregery at a little younger age?
Thanks,'
Carlasue

 

[Ross]

A valve can fail over time or it can fail immediately. There is no way to predict that one, but the signs and symptoms are the same as a human heart valve going bad.

Mechanical valves should last the lifetime of the patient. Of course there are exceptions and no guarantees, but lifetime is most likely.

People at 75 and older have this operation too and yes, even reops. It certainly isn't something that they'd want to do at that age, but if it's necessary, it's necessary.

 

[RCB]

Valve life

Valve life

The newest generation of mech valves have been stress tested to over a 100 years with no failures. Other problems
can happen making replacement necessary, but they are extremely rare. Tissue valve tend to slowly degenerate and if you are seeing a card. on a regular basis, he should be able to advise you in plenty of time for a reoperation. Most
people get at least 15 years out of the new tissue valves,
some even more than 20- the data is still being collected.
Reoperation expertise is increasing as we speak. I had my first redo in 1964 and my third in 1982. Surgeon have come very far since those days. In my research, I have
come across studies showing even 4 redos that were successful(Thank God as I am facing my 4th shortly). Age
and cardiac health is the best predicter of success.
With the state of OHS today and in the future, I can see no bad choices for a first operation.

 

[Raverlaw]

Carlasue-

I am 49 and just had my bicuspid aortic valve replaced with a St. Jude's mechanical valve on February 20. They tell me the valve should last longer than the rest of me and won't need replacing.

Eight weeks after surgery I feel great and am on the road to full recovery. I can do things I could never do before surgery and feel better than I have for years. We have stairs at home and I could handle them (slowly) on the first day home from the hospital.

In your area, Duke is THE place to go; your husband will be in good hands. We just got home from a ten day vacation in N.C. and VA. We loved your beautiful state and hope to visit again some time.

Spend some time searching the old threads here - you will find lots of helpful information on Coumadin, valve selection, what to expect post-op, etc. Welcome to the VR community - I've only been a member since about six weeks before my surgery, but what a difference this site made to me!

If you can afford to, send a small donation to Hank, who runs this site as a service to valvers everywhere.

 

[tobagotwo]

The Cheap Tour - Valve choices

The Cheap Tour - Valve choices

I know somebody's gonna be mad at me after this one. I have edited it some on 4/20, and again on 8/27, based on postings, but am afraid to tinker too much.

It's darned hard to make a choice, but here are some of my thoughts, based on the way I interpret the statistics I have read. Perhaps you'll find it a helpful condensation of a lot of information. I'm sure someone will disagree with at least some of my assumptions, so take this as you would any advice - with a big grain of salt. What you won't like is that there is no clear choice, no absolute advantage. Each choice requires a trade-off of some type.

Mechanical Valve

1) Good Likelihood that it last for your lifetime. This means No Resurgery if no other heart problems develop.
2) Requires Anticoagulant Therapy, as there is a tendency for clots to be thrown by the valve. Coumadin (wafarin) is the only viable ACT drug at this time. Most state that this is not a big issue. Some percentage of people have less fortunate responses. There is a required amount of diet, testing, and medicating discipline involved.
3) There are issues with Coumadin (Warfarin), including its reactiveness with other drugs and its ability to complicate other health issues. Bridge therapy (frequently heparin or lovenox) is required to maintain anticoagulation during any later surgeries (even if unrelated), and for some routine medical activities, such as colonoscopy.
4) Coumadin use at the required levels does pose a risk of its own, due to bleeding issues, particularly in the brain.

Animal Tissue Valve

1) Near Certainty you will require resurgery in 15-25 years, based on your age and type chosen - (my) best guess is about 18 years for the Medtronics Mosaic (porcine) and about 22 years for the CE Perimount Magna (bovine). Can be significantly shorter valve life in some younger patients (below 45).
2) Some Possibility you might have to go on Coumadin anyway, should you develop continuing atrial fibrillation or other serious rhythm issues. Alternatives are Plavix and aspirin, if this problem develops.
3) If all goes well, basically no (valve-based) restrictions on your life whatsoever within six months or less, including no extra meds. Until, of course, the valve starts to deteriorate

Homograft

1) Human valve from donor - same plusses as the animal tissue valves
2) Seems to harden up or calcify somewhere around the 15-to-20-year mark, and require replacement.

Ross Procedure

1) Choice of surgeon seems to greatly affect the success rate, so choose a surgeon who has a history of success with them. It seems to be a "those who can do it well, do it well often" situation.
2) It's a more invasive and longer surgery, as they're swapping out and replacing your pulmonary valve also. This means longer on-pump (risk) time.
3) You need to have a backup plan, as they may not know for sure if it is doable on your heart until they're in there.
4) In some people (about 1%-2%) there is some rejection reaction to the pulmonary valve homograft, and pulmonary valve becomes stenotic, leading to early replacement or limitations
5) The pulmonary homograft may need replacement in 20-30 years. It is considered a less difficult surgery than the aortic. (Not for you - for your heart)
6) If all goes well, it has potential to be a Permanent Fix, with basically no (valve-related) restrictions on your life, from six months or so out.


General thoughts:

For mechanicals, look at the new On-X, St. Jude's Regent, ATS Open Pivot, or Sorin (Italian) model, all mentioned elsewhere in Valve Selection. These do less blood damage, have better flow characteristics, are more tolerant of INR fluctuations (means fewer clotting events from fluctuations in Coumadin effectiveness), and are even quieter than the older ones.

For tissue, the Carpentier-Edwards Perimount Magna, or the Medtronics Mosaic and Free-Style valve lines. These are both now treated to reduce the amont of eventual calcification. The Mosaic also has zero-gee fixing, which doesn't compress the valve leaflets (compressed valve leaflets calcify more rapidly).

Animal Tissue valve differences: the Medtronics Mosaic is an actual pig valve, treated to not be rejected. The CE PM is cow pericardium, manufactured into a working valve formation, treated not to be rejected. Rejection reactions are not noted in patients in the US, or anywhere in patients beyond puberty.

Insist on the newest models, if your hospital is keeping valves in stock. You don't want to get an older model just to benefit their inventory system (hint from my surgeon's physician's assistant).

Shocking: guess what "in stock" means? They literally have these in jars, just sitting around in drawers in the hospital. Unbelievable.

Good luck.

 

[RCB]

Tobagotwo

Tobagotwo

Your list is the best one I have seen anywhere. Great Job!
You should produce a pamphlet for doctor's office.
I would add to point #4, under mech. valves, that future invasive procedure are complicated by coumadin and should
be done under "bridge therapy". This is so important as
the discussion in other threads has pointed out.

 

[Granbonny]

Bob

Bob

Great post..but are you saying that the Ross will last a Lifetime? Bonnie

 

[tobagotwo]

It appears that some Ross procedures do go the distance, although I don't know the Ross numbers well. I tried to show it as conditional (in one sentence or less), because I don't think the "permanent fix" numbers are where most people would like them to be. However, those who have had them successfully are ardent in their support for them.

I tried very hard to not favor one choice over another, and hope that I was at least moderately successful in that. As you know, my choice was the Mosaic (and would be again). However, I sincerely hope that no one would glean that from the text of the post.

 

[SJJ]

Bob,
Aptly said! Next time I have the misfortune of reading an instructional booklet, I'll remember that information can, in fact, be stated clearly and succintly. I appreciate your clarity of mind......I lost mine with menopause.
Sue

 

[tobagotwo]

I agree with your point on bridge therapy. It's well taken. However, I had a long sentence about issues around Coumadin, and did not want to overly belabor the point. Part of the effort was to make things as succinct as possible, and essay not to overweight the positives or negatives.

People (including me) are very quick to point out what they see as primary issues with anticoagulation therapy (Coumadin/Warfarin use), so I'm certain they'll read much about its perceived negative side in nearby posts.

Ross Procedures aside, many who chose mechanicals also ardently support that choice (including Hank, by the way). They use the bloodthinners every single day, and frequently say that it is no big deal, or that it doesn't affect their lives at all, as they see it. I'm not competent to disagree. I don't use it, so I don't honestly know. As such, I feel I need to accept their opinions of it without rancor.

I was (am) more concerned about the personal issues of Coumadin than of a reoperation, and made my choice accordingly. I still feel right about my choice. However, I'll let you know in twenty years if I have been foolish to feel smug about it today.

Once they've cut into your heart, you're pretty much invested in your new valve, whatever it is. The joy and strength of a site like this is that you learn that you can make the decision yourself. The agony is that you do make the choice yourself, knowing that every course available has flaws, and that in the end you, yourself are responsible.

I say God Bless everyone on this site who has made that choice, whatever it was, even if it was to decide to go with whatever the surgeon offered. It's not so much what valve you wind up with that is the critical point. It's that in the very act of forming your decision, you are making a personal choice to live. That's why we're here; that's why we post. We want to be around other people who have chosen to live.

 

[RCB]

This is so true

This is so true

"Once they've cut into your heart, you're pretty much invested in your new valve, whatever it is. "

 

[Karlynn]

I'm a bit confused on the Ross procedure. I can see where the aortic replacement may be a long lasting one, but don't they then replace the pulmonary with a tissue valve and wouldn't that have to be replaced at some point. I'm very uninformed about the Ross - but isn't it placing your own pulmonary valve in the aortic position and then putting a tissue valve of some kind in the pulmonary position? Just curious.

 

[tobagotwo]

Ross Procedure: The Cheap Tour

Ross Procedure: The Cheap Tour

Here's the cheap tour, as I understand it:

It happens that those two valves are formed the same by the body, so the notion is that you can replace the damaged, hard-working aortic valve with your own, already-made "clone" from the pulmonary position. The "new" aortic valve is your own, living tissue, and can possibly adapt to its new position for life.

The pulmonary valve works much less hard than the aortic valve, and has much less stress on it. In that low-stress, low-pressure environment, a replacement can last much, much longer than an aortic replacement could. Again, possibly for a lifetime.

Really, however, you should look to some of the folks here who have opted for it, as they are much more knowledgeable. I'm sure one will come along in a few posts. Posts are sort of like busses. They come along every few minutes, but on an unfathomable schedule developed by chance.

 

[carlasue]

Bob,
Thanks for the information on the different valves. You did a great job of clarifying a few things for us. Only 2 more days til decision time, so it was a great help! Your surgery, if I remember correctly, was very recent. How are you doing and have you been happy with your valve selection?
Carlasue

 

[Granbonny]

Carlasue

Carlasue

One of the best threads ever posted on Vr. was started by Peter Easton on July 19, 2001. Titled..Making the choice..RP, Homograft, Mechanical or tissue. Hundreds of new valvers have gone to his post. and all rave about it. Try to find it..by searching or maybe Ross or Nancy can post it. Bonnie