Update & Choices - This is Difficult

[Arc_Weld]

Hello again.. Its me…
Its been a demanding week again.

I had a heart echo at UAB yesterday.
Wow! They were very very meticulous.
I was impressed.
My aortic valve is leaking 4+ Severely… :(

We met Dr. McGiffin today.
What a super doctor! :)
Its not a question of having surgery any more.

Now its time to choose between mechanical or tissue.
My wife and I are driving ourselves crazy debating pros & cons.

Mechanical is forever.. Except blood thinners

Tissue is 15 yrs.. or more.. maybe if things go well… but
A second surgery will be needed later on.

I have less than two weeks to decide….help

[Karlynn]

You have stumbled into probably our most contentious issue. We are all valve loyal to our choice and have strong reasons for being so. There are many threads on valve choice, but we can also give some information here.

In my opinion, the biggest hurdle in getting a mechanical valve is the huge misconception that some in the medical community disseminate to people about the "dangers" and "heavy restrictions" that supposedly go along with Coumadin. This is a great site to be able to put to rest a lot of the misconceptions surrounding Coumadin. Our esteemed member Al Lodwick also has a site that you will find helpful. www.warfarinfo.com Al is our warfarin (Coumadin) expert. He is a pharmacist and runs his own anticoagulation clinic. He knows more about Coumadin than most doctors.

I've had my mechanical mitral valve for 14 years (in October). I was 32 when I had it installed. I've lived a very regular, active life. I work out 3 days a week. I've traveled to Europe twice in the last 4 years. I eat and drink what I want, but I don't do anything to excess...most of the time :rolleyes: . (But that's just a healthy way to live, regardless of medications). Oh...and I used a chainsaw in my garden this summer!!!!! In my mind - the biggest draw back to being on Coumadin is the fact that if/when I have to have a surgery or invasive procedure I will have to go off my Coumadin and use bridge therapy. I would be lying if I said that didn't scare me a little. But many here have done all sorts of surgeries and procedures successfully with this protocol.

The biggest benefit for me is that I'm not living my life wondering when my next open heart surgery will be. And believe me, if I had a tissue valve, I'm one of those people who would have that constantly in the back of my mind. I'm not guaranteed to never have another OHS, but tissue valves give a guarantee that you will have another OHS. (Unless you're 85.)

We have some wonderful members here who will show the same loyalty for their tissue valves. No matter what choice you make, the bottom line is that you are saving your life and any choice is good.

[geebee]

Welcome to the toughest decision you will have to make after the surgery decision. Here is one opinion from a mechanical owner who has been on coumadin for almost 25 years.

First, if I were making the choice today, I would go mechanical if I were your age. A number of people who go tissue still need coumadin for other reasons. I would be very upset if I chose tissue and then had to be on coumadin anyway.

Second, coumadin is not a big deal for me. Other than a couple of surgeries for which I had to do the heparin bridging thing, the day to day issues of coumadin are minimal. It is really just another pill to take. Now that I am home testing, it is even easier. I have better control, I eat anything I want, and the only other issue is bleeding a little longer from cuts or bruising a little darker from bumps.

That being said, of course, it is your decision, and you will hear many different sides. I would choose any option that almost guaranteed no more surgeries in my lifetime. Second (and third) surgeries ARE a much bigger deal than coumadin.

[Ross]

Ultimately the decision is yours and yours alone. I am for anything that will keep people from hopefully ever having to have this surgery again. No one wants to do it, but if it has to be done, why on earth would you want to go at it more then once? Granted, there are no guarantees either way, but when you finally choose, be content with it and don't try and second guess it.

[Georgia]

Did your surgeon have a preference? Do you have any health problems besides your heart that make another open heart surgery even more dangerous than a second surgery is for a person without additional illnesses?

Remember how shocked and frightened of open heart you were a week ago.

I have a mechanical valve - works fine, coumadin is mostly OK, altho I'd rather not be on it. Because valves were never discussed with my surgeon prior to surgery (he was sure it could be repaired), my mechanical valve was a fait accompli when I woke up.

If I'd had to make a decision about type of valve, I'm pretty sure I'd have chosen a tissue valve. I really hate the bloodletting involved with coumadin, and I was much more afraid of it prior to surgery.

Basically, I feel great now and exercise and have a new lease on life. So I don't regret having the mechanical.

I'm sure this has been little or no help to you, but I thought I'd put my 2 cents in.

Good luck.

[rbl1999]

Hi, you have a tough decision to make, especially where you are so young. You will get some good advice on here. I just had Aorta Valve Replacemnt in July and went with the bovine tissue valve. I have been told and also researched and the newer bovine valves are lasting around 20 years.But I am 59 years old so the decision was much different from what yours will be. I would definately get the opinion of the surgeon, maybe even a second surgical opinion. I wish you all the best, you will feel so much better after this is all over.. Rose

[Arc_Weld]

My wife Patti says I am driving her crazy. :p
Yea.. I am the type...
Engineers just don't know when stop asking questions and Just Do It.

Anyhow….
Y'all are going to love this.
I've had two opinions from two surgeons.
1st its my choice – but Dr. preferred St. Jude Mechanical
2nd its my choice – but Dr. preferred stentless tissue.

Both valves result in a reduction in left ventricle size.
Both valve are very similar in performance .. due to my size & height

I love to RV, hike in the woods, climb on rocks with my kids, run the chain saw, split fire wood for the camping trips, work on the yard…. Work Hard .. Play Harder.

I know I could do all of these no matter which one I choose.

I am a huge pain wimp.
For y'all that have had the surgery...
Would you choose to have it again as an option?

[geebee]

For y'all that have had the surgery...
Would you choose to have it again as an option?

I have 2 more OHS than I ever wanted in my life. I almost died during the second due to a severed pulmonary artery. I was given rather poor odds of surviving the third. I would not make any choices that would result in repeat surgeries. However, many people do and seem very happy with their choice. I am not sure how many of them have actually had a repeat surgery yet so who knows about hindsight? Debra from Brazil has had 3 OHS with tissue valves and is going tissue again for her next surgery. I applaud her courage but I couldn't do it by choice.

[Ross]

For y'all that have had the surgery...
Would you choose to have it again as an option?
Absolutely not! I've been through it twice now and I certainly do not want to go through it again, at least not voluntarily. I nearly died both times. I'm an exception to most.

The pain isn't what gets you. It's the fact that what is done to you seriously depleats everything that you were before surgery. It takes a long time to recover. This is why we associate it with being run over by a truck.

[JohnnyV_46]

This coming Friday will be 6 weeks for me. I still have some sternum pain. Now granted I had more than just a valve, I also had a triple by-pass and an anneuryzm. I have a Bovine tissue valve. I'm 46 and I made the choice based on my fear of Coumadin. I'm not afraid of a second surgery. I also don't miss the constant clicking that some here talk about.

[Ross]

If you go Mechanical, the clicking is not that bad and after a while, you won't even notice it unless your in a sound proof environment. We try very hard to dispell Coumadin myth in here. It is not something to be feared. What should be feared is alot of the lies and myths being spewed forth about it.

Arc Welder there isn't anything that you do that you couldn't continue to do should you have to take Coumadin. I only know a handful of people that allow themselves to be held hostage by the drug. The rest of us live the lives we want to live without giving it a second thought.

Sorry, I have to add this:
If I listened to everything they told me I could not do while on Coumadin, I would have to sit still in a chair for the rest of my life. I still laugh about being told not to use a razor shaving, don't cut yourself, you'll bleed to death, this that and the other. I've cut myself numerous times, sometimes nice big gashes too. I bled a little bit longer, but it was stopped in the same old fashion--direct pressure for a few minutes and a band aid. Work on a car and I don't care what you do, it's going to draw blood from you. It's not a big deal.

[Dennis S]

It sure is your personal choice. I had my aorta valve surgery August 4th, and believe my recovery has been far easier than many I have read about. All my life people have said I have a remarkably high pain threshold.

Having said all of that, there is NO WAY I would make a choice that would cause my wife & I to go through that surgery again, especially at a more advanced age. I felt like it took everything I had this time, and don't want to try it again in 10 to 20 years.

We heat our moutain home with the wood I cut on our property. I use an ATV to plow our driveway which is about 1/4 mile long. Our insurance paid for a small machine that allows me to self-test my Coumadin levels. So far, I have not had any problems from Coumadin.

I am sure you will make a great recovery, and it will seem like someone has rolled back the years as you get used to a normal blood supply through the valve.

[eckw]

I am in the same situation as you. This site is really very helpful. My operation scheduled on Oct 12 and my biggest worry is the coumadin. Now reading all these replies i am a bit more relieved but don't know if coumadin is difficult to manage.
will look into this site for more info.

[Ross]

Now reading all these replies i am a bit more relieved but don't know if coumadin is difficult to manage.
will look into this site for more info.
Coumadin is not difficult to manage so long as the person managing your case knows what they are doing. I would highly recommend you visit Al Lodwicks site at www.warfarinfo.com and read everything you can digest about it. It really will put all your fears aside.

I self dose and self manage with my Cardiologists permission, so anyone can once they understand the way the drug works.

[JohnnyV_46]

Get the Mechanical valve. The mechanical valvers are apparently a tighter group. I really had never heard of this place before my problems. Since I'm here and I have a tissue valve, I've noticed a big difference. Yep, get the Mechanical and take the coumadin.

[Ross]

Get the Mechanical valve. The mechanical valvers are apparently a tighter group. I really had never heard of this place before my problems. Since I'm here and I have a tissue valve, I've noticed a big difference. Yep, get the Mechanical and take the coumadin.
Easy there friend. That's how we mechanical people have felt in the past here and as you see, everyone has a tight finger on their choices. That's what makes these threads so very hard to deal with and more confusing to the person making the decision.

The real answer is, whatever your choice is, it will be the correct one. You can only screw this up by choosing nothing or doing nothing at all about your condition.

[Cris N]

If I had to make the choice I'd go mechanical. When I was in the hospital after my surgery my boss came by to see me. He asked how I was doing & I told him this was the hardest thing I'd ever done. Granted, there are no guarantees in life but I would sure hate to have to repeat this surgery.

Even though I only had my MVR in mid-May my warfarin experience is going just fine. I've had my share of cuts & nicks but they do just fine. I do carry a few bandaids with me just in case!

Best of luck with your decision.

Cris

[geebee]

Get the Mechanical valve. The mechanical valvers are apparently a tighter group. I really had never heard of this place before my problems. Since I'm here and I have a tissue valve, I've noticed a big difference. Yep, get the Mechanical and take the coumadin.
I guess I am not too sure whether this is a zap at those of us with mechanical chiming in or whether you are questioning the choice you made (or something else entirely). Maybe I am being dense by not knowing but I kind of would like a clarification.

[twinmaker]

Most of us here can relate to the position that you are in, trying to make a decision about valve type. I'm 53 and I've had my St. Jude mechanical for 24 years now. I've had two open heart surgeries. The first one was a mitral commissurotomy(cutting away scar tissue) and the second was 7 years later to replace the valve. My surgeon only gave me two choices back in 1981...an older mechanical valve that would have to be replaced or the brand new St. Jude mechanical which he said might last the rest of my life. It really only took me two seconds to decide. I wanted to do everything possible to avoid a third surgery. Now I know that after 24 years of having this valve, something may happen that I will need a third surgery, but I"m hoping that doesn't happen or at least it won't happen for a while. As far as the Coumadin is concerned, I've had one major bleeding problem and some trouble staying within my range, but it's certainly been managable. I do whatever I want to do (within reason) and really never spend too much time dwelling on it. After being on Coumadin for 24 years, it's become part of my life and as far as I'm concerned, my life is pretty normal. Of course, you'll have to follow certain guidelines because of being on Coumadin, but it's not that restrictive. Only you can make this decision and whatever you choose will be the right decision. Don't look back or second guess yourself. You'll find a lot of support on this site no matter what your choice is. We have plenty of members on both sides of this issue and we all respect the others' decisions. I will keep you in my prayers as you ponder this decision. Linda

[tobagotwo]

The fact is that at your age, it is a real crapshoot.

You would likely require two more surgeries to continue with tissue through your life. That is no small thing, although a growing number of people have decided that way as tissue valves have improved. There are are issues that go with more surgeries, largely around scar tissue, that affect your odds and affect your likelihood of having atrial fibrillation, the most common reason for people to take Coumadin (warfarin) other than having a mechanical valve.

However, warfarin is not a negligible addition to your life, either. Each person's response to anticoagulation therapy (ACT) is unique, so another person's experiences may not mirror your own. Many people do very well with it; others fare poorly. For some, there is not much difference in bruising levels or even bleeding. For others, it can exacerbate nosebleeds, menstrual issues, or ease of bruising. A look through the last year's worth of the Coumadin/anticoagulation forum's files will give you a better understanding of some of the concerns that can accompany ACT for those who are not as fortunate in their experiences.

It is to be remembered that warfarin is not an evil thing: it's what makes it possible to put mechanical valves into people's hearts without causing clots and strokes.

The fatality statistics are similar for mechanical and tissue. They are slightly more favorable for mechanical valve recipients in younger patients, and a little better for tissue owners in older patients. However, the data for those studies comes from prior-generation tissue valves, so it is an open question what those statistics will look like later on.

A lot of making the choice has to do with your perception of risks and your tolerance for daily regimen.

Mechanical valves have a fairly constant, low-level risk of stroke and its alter-ego, bleeding problems. While this risk is enhanced when some medical procedures are required, it is generally just a background noise most of the time. You may find that you can ignore that risk over time, or that you feel empowered by controlling your warfarin intake and INR.

You are not proof from further OHS because you have a mechanical valve. If you have a bicuspid valve syndrome, you may have aneurisms that occur over time that require surgical intervention. If you have deterioration of the heart due to endocarditis or radiation treatments, your problem may be progressive, affecting other valves, which may then require surgery themselves.

Warfarin does require regular testing, sometimes from labs, and most people do have to balance their eating (and drinking) habits to keep their INRs in range. Coumadin and its effects are interactive with many other drugs and some common herb supplements. This reduces the number of pharmaceutical remedies that may be available to you, including over-the-counter pain relievers, like aspirin, ibuprofen (Advil, Medipren), and Aleve, as well as prescription NSAIDs.

There seems to be little accuracy to the doomsaying doctors who would deny Coumadin users so many activites out of fear of bleeding events. Those which bear some concern are activities which may result in head injuries, as it may be more difficult to halt intercranial bleeding. However, when Sonny Bono died after skiing into a tree, he wasn't on warfarin to my knowledge, so the risk may be somewhat elevated, but remains relative.

There is still a fair amount of ignorance among doctors about the proper treatment of people on Coumadin ACT, and you will need to become your own advocate to ensure that one bad doctor or nurse doesn't do you more harm than good. Doctors may improperly order you to go off of your ACT for procedures that don't require it. Some dentists may also demand you go off of warfarin for extractions or similar procedures. Your primary risk from these unlearned professionals is stroke, due to being off of your Coumadin. When you do have bridging therapy with heparin or lovenox, such as for Colonoscopy and some other intrusive medical procedures, it may include self-delivered injections.

So, it would be hard to accept a blanket statement that the use of Coumadin or the risk of stroke is nothing. That said, a mechanical valve itself is highly reliable, runs trouble-free, and rarely deteriorates. It can be an answer for life for some, with no further surgeries.

Tissue valves have peak risks at operation time, and lower risk in between. They have periods when they are in decline, much as your current, original valve is having, before they are replaced. That means a year or more of valve function problems in the future for this new valve, when it hits its useful life limit. And it will happen again in your case, with a second valve, before you are likely to keep your third valve for the rest of your life.

Second or third surgeries tend to be more difficult and run longer, although in non-complicated cases, the risk factor is only mildly elevated. Scar tissue and adhesions tend to cause the most difficulty for the surgeon. However, other health issues, even unrelated to the heart, that come up as you age may make that surgery more difficult for you, or raise your risk level for it substantially.

With multiple surgeries, you also run the risk of restrictions to heart movement due to scar tissue in the heart or in the pericardium which surrounds the heart. Your likelihood of arrhythmias increases as well, as some electrical conductivity and contractility in the heart muscle is diminished in scarred areas.

Having a tissue valve does keep you free from the requirements of valve-related daily medication and testing. You are essentially normal between valve deterioration cycles, with no short-term restrictions on your activities or diet (getting fat is still not a good idea, as it causes overall stress on the heart).

However, having a tissue valve does not always make you free from having to take Coumadin. If you develop atrial fibrillation, or if you are felt to be susceptible to stroke, you doctor may prescribe it for you anyway. Paradoxically, having multiple surgeries is a causitive factor for atrial fibrillation, as is advancing age.

It is to be noted that, with a normal heart structure, you can switch from or to either valve type at any time a surgery is already required on the valve. For example, if you were to have a tissue valve now, and wind up on Coumadin anyway, you could change over to a mechanical valve when replacement of the current valve comes due.

Despite your surgeon's bent toward the stentless valve, the tissue valve with the best track record for longevity is the bovine valve, which has consistently averaged five years' longer useful life than any of the porcine valves to this point, stented or stentless. I would not consider going the tissue route without at least discussing that with your surgeon. His perception is currently based on marketing, not actual patient use study data. Although new anticalcification treatments and perservative techniques have recently been introduced for both types, the structures of the valves have not been changed from their predecessors, so the historical data is likely to still follow through.

Future advancements may change the scenery, but don't hold your breath - or your surgery. The On-X mechanical valve is undergoing trials to see if aspirin ACT provides enough anti-clot safety to allow patients to use it in place of warfarin. However, the results will be unknown for some time.

On the tissue side, if you are older and have other problems, your tissue valve might be replaceable with a catheter-introduced valve, in a more complicated angiogram-like procedure, rather than through more OHS. Some of this type of valve are undergoing trials at this time. However, catheter-placed valves are currently inferior with regard to valve opening size and longevity, and are only being used in compassionate cases.

Each choice is has its appeal and downsides. It is best to look within yourself for the choice that most works with your personal bent, your tolerance for different types of risk, and your ability to faithfully follow some elements of a required routine in life.

Best wishes,

[terryj]

My husband had his bicuspid aortic valve replaced with a mechanical valve 4 years ago. He will be 56 in November. He hunts,fishes,uses a chainsaw to cut our firewood,does all our carpentary work and works 8-12 hours a day in an industrial warehouse as a Maintenance mechanic. The coumadin has not been a big issue and the ticking is barely noticeable to us now. But,when a new mechanic starts at work they sometimes ask why his watch is so loud. I know there is no quarantee he may not need surgery again at some point we feel at peace with his choice for a mechanical. This was what his doctor suggested and this is what we went with.

[Curtsmum]

My son is waiting for his 2nd OHS,we have been told that it has to be machanical, althow im not sure why, so will ask at the next check-up, because he is so young he will need it replaced again anyway, or so where lead to believe, because they wont be able to fit a adult size. Iam releived in a way because we dont have to make a choice, i think that would be a really difficult thing to choose. Good luck with your decition and all the best Paula x

[Kate]

I just wanted to praise Bob H. for his fabulous summary of the risks involved with tissue vs. mechanical - very balanced and clear. Thanks!

I am the same age as Arc Welder and had my aortic valve replaced two weeks ago with a bovine stented valve. Most everything has already been covered in this thread but I wanted to add a note about the importance of thinking about your own personality style when making this difficult decision. I really agree that either choice can be the correct one, but much of it depends upon who you are as a person. Myself, I do very well in a crisis but have a horror of routine and don't handle every day stress all that well. As a result, I decided to accept having OHS every 10 - 15 years to avoid the daily risks and stress associated with Coumadin.

As it turns out, the surgery really wasn't that bad - not much pain, I was walking the next day and, except for being tired and a little sore, am already back to my old self. And, assuming I get to have my next surgery at the Cleveland Clinic again, the risks involved only go up very slightly (from 1% to under 2% for fatality, similiar increases in risk of stroke, congnitive loss, etc.) But, again, I wouldn't recommend this choice for everyone. It just was the right one for me.

I wish you the best of luck and am confident you will make the choice that is right for you. Kate

[Ross]

I just wanted to praise Bob H. for his fabulous summary of the risks involved with tissue vs. mechanical - very balanced and clear. Thanks!
http://home.neo.rr.com/blebs99/Smilies/humble.gif Since Bob isn't on to post this himself. :D

[Karlynn]

Bob - WOW
Thanks for taking the time to do such a thorough assessment.

[geebee]

I think we should hang on to Bob's analysis and information for future threads. It states all sides very clearly.

[RCB]

I think we should hang on to Bob's analysis and information for future threads. It states all sides very clearly.

DITTO THAT :)

[Nancy]

Loved the summary, Bob. You hit all the salient points.

[Gemma]

Yep, what Bob said :) .

Jim went for the mechanical valve. He's also an engineer, and was impressed by the capabilities of the valve his surgeon recommended. He was also offered the choice of a tissue valve (with the down-side of definite re-ops in the future) or the Ross (which involved messing with a perfectly healthy valve - great if it works but not if anything goes wrong). There was no way he could imagine choosing to go through OHS again if at all possible, either before he'd been through it or having experienced it. But I think his recovery was a little longer than some around the same age have experienced. Unfortunately there's no way of knowing until after you've been through it yourself whether you think you can handle it again!

Whatever you choose, you'll be getting a valve that works PROPERLY! So just go with what you feel is right and be happy with your choice.

Gemma.

[chilihead]

Thought this was worth sharing.
New York Daily News
Up close and surgical
By STEVE DITLEA
Wednesday, September 28th, 2005

When Manhattanite Jennifer Robbins was told she needed a heart-valve replacement, she didn't know much about the toughest yet most permanent surgery for her condition: the Ross procedure. So she hurried over to an operating room at Beth Israel Medical Center to see the operation performed by her surgeon, Dr. Paul Stelzer. Reassured, she went ahead with the surgery a month later in the same OR.
Robbins' initial visit wasn't an actual one. Getting a prospective patient, let alone anyone not directly involved in surgery, into a New York City hospital operating room would require permission from the patient under the knife, doctors and hospital administrators.

Instead, Robbins' presence was virtual, via a one-hour video of the operation originally performed live on the Web in October 2004, archived and available 2-4/7 at OR-live.com. It's one of 205 recently shot videos of surgical procedures at the site, accessible for free.

UNPRECEDENTED ACCESS

For fans of "ER" on broadcast television and OR reality shows on the Discovery and Learning Channel cable networks, seeing what goes on within the sterile zone may not seem so novel. Yet the three-year-old OR-live site offers unprecedented access to some of the nation's top operating rooms for patients and families faced with crucial medical decisions.

"It put my mind at ease to see how comfortable Dr. Stelzer looked during the operation," Robbins recalled a few weeks after her own successful surgery. Also reassuring for Robbins, a technical designer in the garment industry, was the skilled suturing in the video: "I appreciated the stitching and the cutting," she said.

At age 40, Robbins was an ideal candidate for replacement of her own failing heart valve with one from the other side of her heart, which was in turn replaced with a valve from a human cadaver. The Ross procedure, which puts the patient on a heart-lung machine for much longer than a simpler mechanical or pig valve replacement, results in a repair that can last a lifetime (instead of 10 to 20 years for more common replacements - and without their need for anti-coagulant drugs).

AN INEXPENSIVE SHOOT

Only a few cardiac surgeons in New York or elsewhere offer the procedure. "It's my Mercedes-Benz option for isolated aortic valve disease in younger adult patients," explained Stelzer, who has been performing the difficult operation since 1987. To promote his expertise among referring doctors and potential patients around the world, Beth Israel's marketing department paid the $35,000 cost of producing, Webcasting and archiving the video by OR-live's parent company, slp3D Inc. of West Hartford, Conn.

Shooting surgery live is expensive, involving three cameras in the operating room and one covering the Webcast host, usually a medical colleague, plus four technicians handling multimedia concerns. In some cases, the tab for a video is picked up by makers of the device or by ug manufacturers. To date, some of OR-live's archived videos have been accessed by more than 25,000 visitors.

A replay of "Unique Aortic Valve Replacement for Younger Patients" (despite its dull title) proved compelling viewing. This was Stelzer's 375th Ross procedure. (Jennifer Robbins' was No. 382.) On screen, the 58-year-old surgeon exuded the calm of an airline pilot in the eye of a hurricane. With a stilled heart beneath his hands, he pointed out wonders of anatomy and tricks of the trade (a replacement valve is healthy if it holds water squirted into it).

Amid the painstaking work of reconstructing a human heart, he even found time for some humor; asked if there was any danger of dying during the operation, he responded, "Me, or the patient?" He turned dead serious when discussing the vital math of surgical experience with this procedure: "I lost three out of my first 30 patients, three more out of the next 200, and I haven't lost anybody since 1998,%" he said.

A little too much information? Apparently not, judging from the 4-to-1 ratio of non-professionals to health professionals accessing OR-live's Webcasts and archived videos. Peter Gailey, slp3D executive vice president for business development, noted that the site's original audience was supposed to be mostly doctors. "The big 'A-ha' for us was how well embraced this has been by the patient population," he says.

DEMYSTIFYING THE PROCESS

From cardiovascular surgery to urology, endocrinology to radiology, OR-live is evolving into an online video encyclopedia of 21st-century medical procedures, accessible to anyone with a Net connection and a mouse.

"This demystifies the operating room," said Eve-Marie Lacroix, chief of the public service division for the U.S. National Library of Medicine (part of the National Institutes of Health), which has added OR-live videos and live Webcasts to the resources on its popular patient-oriented site, MedlinePlus.gov. "It's not just patients before their surgery. Patients who've had surgery can finally understand what they had."

As for Robbins, recovering from her operation and without new episodes of "ER" to watch on TV, she began browsing OR-live again. "Now I'm interested in seeing other procedures that people I know have had," she said.

[Granbonny]

Great post, Bob......Arc..You and your wife keep reading..making notes, ect.. Being a pain wimp..not to worry..The hospital staff will make sure you are not in pain after your surgery..They want you..up and walking the halls shortly after surgery..Gets the nasty drugs out of your body...that they gave you during the surgery...the more you walk, the better you feel.Hospital stay is only 4-5 days..so, you will have to go home and continue to walk..First in the house and maybe the 2nd week outside a tad..Build it up..day by day..week by week...Most feel pretty good by the 6th week... NOT enough to drive your RV.. :p Unless, the wife drives..you may need to park it until next spring.........I take coumadin..no big deal..just have to take a pill everyday..If, you do decide to go Mech..try to look into getting a Protime......That way, you can still travel and if you are worried about your INR range..you can test it on the road. Once you stay in range..you only have to test maybe every 3-4 weeks. I think that you are still young enough, if you go tissue, you will have family around the 2nd time to help out.. and YES..you will need someone home with you the first few weeks..You will feel too weak to cook, ect..and will need help with meds, water, going to bathroom, ect.But, NO pain..just weak.. This is MAJOR surgery..and takes a long time..for those cells, muscles, ect. to fall back into place. :D We will be here to support you on any decision you make..and when you come home...just ask away..for any problems..post-op...Bonnie

[Cris N]

I think we should hang on to Bob's analysis and information for future threads. It states all sides very clearly.
I totally agree - very well written!

Cris

[tobagotwo]

Chilihead has pointed out an obvious flaw in this thread, inthat we haven't discussed the Ross Procedure. This is a procedure that replaces your faulty aortic valve with your nearly identical pulmonary valve, and usually places a homograft (from a human donor) in the less-demanding pulmonary valve position.

When it is successful, the Ross Procedure is the gold standard for aortic valve replacement, offering the only possibility of one-time valve surgery that produces lifelong, living-tissue repair without drugs.

A Ross-type procedure has also been tried in very limited numbers on the mitral valve, with mixed results.

One difficulty with the Ross Procedure is developing a feel for when it is appropriate. From postings during the last year, it appears that some of the surgeons who perform them are also unsure when it is a good risk. This is a poignant reason to seek out a highly experienced surgeon for the Ross procedure, who has years of successful patients in his wake. If you want to do it, look for a Stelzer.

There are some things that can make a Ross Procedure fail over the short term (less than ten years). I believe these are not due to poor surgery or a failure of the procedure itself, but of the diagnosis instead. This is important, because a failed Ross Procedure leaves the heart more damaged than more traditional surgeries do.

I believe that the cardiologist and the surgeon must fully understand the cause of the surgery candidate's valve disease, and whether it is a static or progressive problem. My personal observations and assumptions from posts and articles are that the cardiologist and surgeon must have a high degree of certainty that there is not a tendency toward aneurism; that other valves are not deteriorating as well, which may require later replacement or repair; and that the patient is not developing myxomatous (spongy) tissue as part of a bicuspid aortic syndrome, as the valve tissue itself will fail.

They must also stabilize the aortic root, if there is any chance that it will grow or deform.

These types of issues were evident in most of the failed Ross procedures.

I don't know the current, long-term success rate for Ross procedures, but it is certainly better than 50%, and I will edit the number here into this posting, if someone will provide it from a good source. I offer this because I note that I have discussed reasons for failure, but not much about the positive side of successes. It really is a beautiful thing when it is well done.

The aortic valve, being your own tissue, roots itself and continues to thrive as your own, living tissue. However, in many cases, there is a fairly strong reaction to the pulmonary homograft in the short term, and just as it starts to look quite bad, the response fizzles out and the valve settles down to long-term normalcy. This is common enough that it is considered a normal course of events, and some surgeons even feel it is a good sign for long-term success of the pulmonary homograft.

The homograft pulmonary valve can fail due to autoimmune reactions to it, or it can slowly close up over time, if the person lives a very long life. But slow failure of the pulmonary valve is not as severe an issue as an aortic or mitral valve, and its surgery is considered less difficult and less dangerous (although it certainly wouldn't seem that way to someone who is having it). It's also under trials for replacement via catheter. As it's under far less pressure than the aortic valve, it's a far better candidate for catheter-placed valves in their current state of development.

Best wishes,

[Paul_N]

Arc,

If you take anything away from here, let it be that when you have made a choice, it will be the right one for you.

You can see this type of thread is the one that generates a ton of responses. Keep searching previous articles and print them out. Take them to the Dr. with you and discuss them. See another Dr. if your able and get THEIR opinion. When you think you've heard enough, make your choice and thank God you live in a time where you HAVE a choice.

I turn 42 in December and had my surgery in October of 03'. I've been a member of the local fire department for over 16 years and the department at my day job, a refinery, for 9 years. I still roll out of bed at God knows what time, making calls. I haven't missed a beat after recovering from my surgery. I went with a Ross Procedure. I was on the table 7 1/2 hours and on the pump for 4 of them. Other procedures probably would have been quicker or easier, but I went the way I did cause it felt right to me after talking with several Dr.'s. Will I ever have to go through another surgery? I don't know ... neither does anyone else. If I do, I'll weigh it all out again and make a choice.

Bottom line ... once you have your surgery, it's in God's hands. Nobody here ever received a written guarantee with the valve they chose. As we're all aware, guarantee's aren't part of life.

You ask as many questions or search as hard as you need to until you feel comfortable. This is your choice. No matter the way you go, trust it will be right one for you. You can do this. Like our buddy Ross always says ... it damn sure beats the alternative.

Paul

[CCRN]

So glad to hear you're looking at your options for recovery......surgery. :) I didn't get to choose my valve. I have a mechanical valve and have been very surprised at how easy the coumadin routine has been. I thought it would be awful but it's not. I still dream about the tissue valve. If I could have made it ten more years I might have gotten one. Alas, it wasn't meant to be. I AM alive and so far that has been a good thing. :) Some people get a tissue valve and wind up on coumadin anyway. Some people get a tissue valve and end up with redo open heart surgery in eight years or less. Some people get a MECHANICAL valve and have to have the surgery again in a year. The best advice I can give is to make this decision with your physician.....listening to his reasoning in choice. An educated choice is the best choice and you're getting it here in one big cram session. My best wishes and prayers are with you for a great recovery whether you moo, oink, or click!

[surfsparky]

Thanks Jim and Bob for raising the choice of the Ross Procedure. Because Ross patients are a minority, it's a choice that can be overlooked. Bob, like your detailed overview of the tissue and mechanical, your points about the Ross Procedure are spot on. Thank you so much for your incredible insight and clarity. Where would be without you?!

Cheers,
Yolanda

[RCB]

So glad to hear you're looking at your options for recovery......surgery. :) I didn't get to choose my valve. I have a mechanical valve and have been very surprised at how easy the coumadin routine has been. I thought it would be awful but it's not. I still dream about the tissue valve. If I could have made it ten more years I might have gotten one. Alas, it wasn't meant to be. I AM alive and so far that has been a good thing. :) Some people get a tissue valve and wind up on coumadin anyway. Some people get a tissue valve and end up with redo open heart surgery in eight years or less. Some people get a MECHANICAL valve and have to have the surgery again in a year. The best advice I can give is to make this decision with your physician.....listening to his reasoning in choice. An educated choice is the best choice and you're getting it here in one big cram session. My best wishes and prayers are with you for a great recovery whether you moo, oink, or click!

CCRN bring up a point that this forum constantly deals with:
"I have a mechanical valve and have been very surprised at how easy the coumadin routine has been. I thought it would be awful but it's not."

Here is a medical professional who deals with cardiac pts. every day and works around other professsionals who should know and understand ACT.
Based on that experience and in spite of the research she has gained here from Al's site and the personal experience of years of first hand use by many valvers here- she "thought it would be awful". When she actually went on it,
she felt "it was was not." This illustrates a point, that seemed to be constantly repeated. If you want to know about warfarin, ask someone who has actually had years of experience with it. Most( but not all) will tell you " I thought it would be awful but it's not."

Something to think about the next time a new member posts about how they
have "heard" how bad warfarin is, but they never stop to think that how happy they will be when it prevents a future HVR surgery and all the problems that will affect them and their families when they are older and good health becomes more problematic!

[mamoojr]

DITTO THAT :)

Just saw your thread & see that you had Dr. Kay as your surgeon also.
Are you still in Cleveland & going to SVCH for treatments?
I had the Kay/ suziki mitral valve in 1973, am 59 and doing great.