Facing Surgery for 2nd time

[DeWayne]

In the next month (date not set yet) I will be facing a 2nd OHS for the aortic valve. This time its valve replacement and partial aortic prosthesis due to a aneurism that at the root is 5.8 and partial arch included (but not including the vessels at the top).

My first surgery happened 47 years ago (1959). I of course do not remember much of it, but at that time the valve was repaired, not replaced, I am not even sure they had replacement then! I am now 52 and otherwise is good health. Cath was done last week and they found no blockages or anything else of real concern.

My scar from that surgery is horizontal across the chest. This time they will do the vertical (I will have a cross on my chest, thinking I can start my own religious cult afterwards

We seem to be getting slightly conflicting ideas as to the valve type. I have pretty much narrow my choices to either the ON-X valve or a tissue valve. Of course coumadin is the real concern here, seems many people have problems with it plus the life style changes and constant testing.

The cardiologist seems to favor the mechanical valve while the surgeon is saying 75% today select the tissue valve. This is somewhat confusing to us to say the least. He said that 10 years ago 75% chose mechanical and it was reversed today. Is this because of coumadin? Does it change ones lifestyle that much?

Of course with a tissue valve I would face a future surgery which would be a 3rd which also causes me some concern. Just not sure what to think, what to do yet.

Surgery will happen at Emory in Atlanta, GA. most likely around the last week of July as it looks now. Which means soon I have to make that huge decision of which valve.

Just how loud are these mechanical valves? What would someone compare the noise level to? Coumadin, how limiting is it? anything else you can think of that might be of help would be appreciated.

From what the surgoen talked about it sounded like this is surgery done with lowered body tems, is this the best way/only way?

lots of questions but that is where I will stop for now.

 

[Lynlw]

Hi, I'm not on coumaden or even the patient, my son is, but it's late so wanted to respond since if you are anything like me you will probably keep checking.
wow 47 year w/ the repair is wonderful. My son has a bovine valve, he is young (18)but will need other parts replaced every decade or so, so we went w/ tissue. anything i know about coumaden i learned here, the people are very knowledable and very patient for the most part when you ask questions
the first thing I learned is coumaden is not the scarey thing many people including doctors make it out to be. you don't have to change your diet to avoid vit K, you just have to be relatively consistant w/ your diet. also you can still be active if you ski ride a bike ect be sure to wear a helmet.and for the most part life.
I'm not sure of your age so am thinking if you are worrying about another surgery if you get a tissue you are probaly in your 50s or early 60s. so age plays a part in what valve to go with , also if you have any medical conditions beside your heart like a bad back or GI issues, you have to think about how coumadin could affect treatments ect. if you read the coumden /home testing and active forums you can get an idea of how others are doing and if you got a mechanical you should look into home testing.
Justin also had his first surgery between his ribs and around his back but only the left side was cut, he other 3 where done at the sternum.
well in the morning you will get answers from the more knowledable members, also do a search for Al's warafin site, he has anything you would need to know about coumaden,
good luck Lyn www.caringbridge.org/nj/justinw
ps I don't know anything about emery, just make sure the surgeon has alot of experience w/ valves, that would be my advice
from what i know the OX valve seems to be a valve a few people here are interested in getting

edited here is the link to Al's site http://www.warfarinfo.com/

 

[Ross]

Hello DeWayne and welcome to the forum

Your at an age where you could go either way in valve selection. I'll address the Coumadin issue, but from there, you'll have to do some studying and decide from that.

Coumadin is not the big hairy monster that so many make it to be. There is so much myth circulating out there that it's sickening. The drug itself is not life altering. You have to protect your head if you do things that require it, but then so does everyone else. You do not bleed more, you just bleed a little longer. You stop bleeding the same way. Direct pressure for a little longer then usual. The drawbacks to Coumadin are, frequent testing, which if you can home test, this isn't even an issue. Other invasive procedures--You may have to come off Coumadin and be bridged with Heprin or Lovenox until the procedure is over and your INR is back in range. The biggest single drawback that we see in here is total lack of knowledge by the professional community as to how this drug works. Mismanagement is an issue. If you can get to a Clinic with some real experienced people, it's not bad, but finding places that know what they are doing is difficult. Some people tell you that you can't eat this or that which is pure hogwash. You'll find lots of things are pure hogwash. Our manta around here is Dose the diet you eat, Do not diet the dose of the drug your on. Eat what you like and as much as you like on a consistent or almost consistent basis and have your dose adjusted to match that diet.
Lifestyle--Almost none of us have altered our lifestyles at all. It's not an issue.

I suggest you take a gander at our resident pro's site, Al Lodwicks www.warfarinfo.com where he has the most complete information of any site on Coumadin. It will dispell many myths and give you piece of mind should you decide to go On-X.

There is also another post from another member, Tobagotwo, that you should read. He pretty well details the ins and outs of each choice.

http://www.valvereplacement.com/forums/showthread.php?t=14330

As for how loud are they. At first, they can be a bit unsettling because they are new and your sensitive to the sound, but after a short while, most people don't even hear them anymore. I can't hear mine unless I'm in a totally quiet environment and then just barely.

If you have more questions, ask away and again, welcome.

 

[Karlynn]

Welcome DeWayne. You have found a wonderful place here. It's full of people who have been there/done that.

I question the doctor's stats on 75%. My question would be "What age is he speaking of?" Age is the biggest reason one valve is recommended over another. At the age of 52, you are in a gray area. Getting a tissue valve will hopefully mean that at some time you have to have it replaced - because you plan on living longer than 20 more years. So the unknown is what physical shape you will be in at that time. Getting a mechanical at 52 would mean that you hopefully would never have to have another replacement, but as you age you may face other medical issues that Coumadin could possibly complicate. So the unfortunate thing for you is that you are in the toughest age range for making a clear decision. The good thing is that no matter what valve you choose - you are saving your life....and life will be good!

Another small issue is that getting a tissue valve doesn't mean you won't have to be on Coumadin for life. There's a small % of people who develop atrial fibrilation post surgery - and this requires Coumadin. Mechanicals don't always last "forever" either. Depending on how the scar tissue forms, there's a very small chance it could impede the valve.

I've been on Coumadin for over 14 years with no problems. I home test and consider myself fortunate compared to diabetics. I test 1 time a week, diabetics must test 2 or 3 times a day.

Take a look at our Active Lifestyles forum and you see that we have many valve atheletes. Regardless of what type of valve you choose, it doesn't have to slow you down.

Best wishes.

 

[geebee]

Welcome.
One of the most debated issues on this site is valve choice. You will find good arguements for both types.
Having been through 3 OHS, I always advocate the route that will avoid further surgeries. You are still very young at 52 and, assuming you live past 70 (which I figure you will calculate in that arena), you will need another surgery if you get a tissue valve this time. I had many complications during both my second and third surgeries and was told I would probably not make it through a fourth.
I have been on coumadin for over 25 years. Except for bridging during surgical procedures, it has been no big deal for me. Now that I home test, it is even less of an issue. I eat what I want, scuba dive, have raced sailboats, ridden motorcyles (both on and off road), drink alcohol in moderation, etc. etc. I live a perfectly normal life.
I am sure you will hear from both sides and will get enough information to make an informed decision. Please remember that it is YOUR decision and, if you want a particular valve, tell your surgeon the reasons and I am sure he will go along with your choice.
Best of luck to you and we are here for you.

 

[Mary]

Another small issue is that getting a tissue valve doesn't mean you won't have to be on Coumadin for life. There's a small % of people who develop atrial fibrilation post surgery - and this requires Coumadin.

This statement frequently arises in valve choice discussions. I ran a poll of members who have received a tissue valve and asked poll respondents to state whether they have developed afib and if they're on coumadin as a result. Here's the link so you can read it for yourself.
http://www.valvereplacement.com/forums/showthread.php?t=14312

72 members polled have stated that they aren't on coumadin post op. One member did say that she was, but later clarified that she had the afib previous to surgery.

My point is that I wouldn't let the possibility of developing afib post surgery influence my valve choice. There are enough factors to consider without adding one that doesn't seem to jive with our own members' experiences.

Good luck on your journey and let us know when you have a surgery date.
Mary

 

[lance]

Tissue/mechanical

Tissue/mechanical

Good morning Wayne and welcome

Whtever valve you choose you will be happy with--you'll be alive. That being said should you choose a mechanican you will without doubt need the services of an excellent clinic for monitoring warfarin INR (International normalized ratio).

Every one on warfarin learns to deal with it. There is a lot of misinformation about this drug and unfortunately a lot of it comes from the medical professionals who don't really understand it and have and will continue to give poor advice.

So be kind to yourself should you choose mechanical and educate yourself in advance about the reality of warfarin. This site is an excellent source of information. Read the postings on anticoagulation and home testing. In my opinion warfarin therapy is a life altering event. I'm on warfarin, am well managed and have learned to live with it.

Good luck

 

[geebee]

This statement frequently arises in valve choice discussions. I ran a poll of members who have received a tissue valve and asked poll respondents to state whether they have developed afib and if they're on coumadin as a result. Here's the link so you can read it for yourself.
http://www.valvereplacement.com/forums/showthread.php?t=14312

72 members polled have stated that they aren't on coumadin post op. One member did say that she was, but later clarified that she had the afib previous to surgery.

My point is that I wouldn't let the possibility of developing afib post surgery influence my valve choice. There are enough factors to consider without adding one that doesn't seem to jive with our own members' experiences.

Good luck on your journey and let us know when you have a surgery date.
Mary

Mary,
I don't want to start a big debate here, and I do recognize the results of the poll you did, but I would like to make a couple of comments.

One, you did not include mechanical valve patients in your poll. Although I realize the poll was to determine whether tissue valve patients end up on coumadin, it does discount those mechanical valve patients, already on coumadin, who might have needed coumadin had they gone tissue. I am one of those patients who would have needed coumadin due to afib, so I am happy to have the mechanical.

Secondly, although I understand the vast majority of members who have tissue valves do not, at this time, require coumadin for afib, we are only talking 72 people out of millions of valve patients. In addition, just because these 72 people do not need coumadin at this time, does not mean they will not in the future. I did not develop chronic afib until 9 years after my last OHS and it was directly related to my surgeries.

I still believe the possibility of needing coumadin despite a tissue valve is a real issue. Certainly not a end-all decision maker but still something to consider.

 

[Karlynn]

Another small issue is that getting a tissue valve doesn't mean you won't have to be on Coumadin for life. There's a small % of people who develop atrial fibrilation post surgery - and this requires Coumadin. Mechanicals don't always last "forever" either. Depending on how the scar tissue forms, there's a very small chance it could impede the valve.

Note - I said "small %" because, in fact, there is. My cardio has 2 patients who are on Coumadin after devoloping a-fib post tissue valve replacement. Many people are on Coumadin for a-fib, who have not had a valve replaced. I personally know 3 - one being my brother-in-law. I think we would be remiss if we didn't mention the fact that a tissue valve does not guarantee that the person will not have to take Coumadin. Such as we would be remiss if we didn't state that getting a mechanical valve doesn't guarantee you will never have a re-op. For both, the "nevers" are highly likely, but not guaranteed.

 

[Kathleen]

Just an opinion

Just an opinion

You must be a stellar patient to get that many years out of a repair. What I am telling you is in no way to be taken to sway your decision just my saga. I had a mitral valve repair at age 29. Five years later I needed to have both the mitral and aortic valve replaced. I made the decision to go mechanical since two times into the chest was enough for me. My second surgery did not go well and I did come as close as I can to not being here. Fast foward a few years and I developed constrictive percardidtis and needed to have the pericardium removed. Very tough surgery lots of scar tissue and adhesions. During the surgery my phrenic nerve was damaged and my diaphragm was paralyzed on the left side. My lung remained collapsed and my internal organs began to move up into that dead space. We had to go in using a thoracotomy approach to reinflate the lung and tie down some organs. Going into the chest was not an option. The diaphrahm is still paralyzed. Each surgery was emotionally difficult for me and for my family. I have had issues with coumadin including a stroke and brain hemmoraghe. Lots of ups and downs with INR's but they always right themselves. Each surgery and procedure has been given extreme thought due to trying to predict the future and analyzing all the risks. My valves are now 21 years old and show some issues but my goodness I have put them through their paces. Would I choose mechanical again---yes without a doubt. Throwing another valve surgery into that mix would have been very difficult. In the last years I have had to have a pacemaker then and ICD defibrillator from a sudden cardiac death episode. I do have to wonder about the seating of valves through a catheter in the future since some of us do develop lots of scar tissue and adhesions and would ask about that. My first surgery was a textbook case the rest, well not textbook. Good luck in your decision and whichever you choose will be the right one for you. Kathleen

 

[Mike C]

Lower body temp

Lower body temp

when the arch needs replacing you body temp is lowered, actually a hypathermic state. it is the best way and is the norm.

I do not believe neccessary if it is only going to arch.

mike

 

[Mary]

A little extra clarification here.
In the same manner that members on coumadin have responded to coumadin questions, tissue valvers responded to a poll asking the question of whether they have needed coumadin for afib after replacement. The statement that they might need to go on coumadin had been used frequently in valve choice discussions.

The poll was designed to show what members have encountered. Yes, our members may have a different experience from what millions of others valve replacement members have experienced. Just as our members have had different experiences with their coumadin managment. The horror stories are out there, but most members on coumadin will attest that they aren't true --in their experience.

There wasn't a percentage given, or a source from where it was gleaned, in the first reply; I offered up our "own" experience so Dewayne could view the poll, and the subsequent replies, for himself. I hope he does so.

If we want to discuss the scope and reliability of the poll why don't we address them in a seperate thread, so that members in the poll would be more likely to respond to the questions raised?

 

[Andyrdj]

The reversal

The reversal

The cardiologist seems to favor the mechanical valve while the surgeon is saying 75% today select the tissue valve. This is somewhat confusing to us to say the least. He said that 10 years ago 75% chose mechanical and it was reversed today. Is this because of coumadin? Does it change ones lifestyle that much?

I think it's mainly because tissue valves have improved so much

1. The ones they have hard evidence for now would be the second generation with lifetimes of 20+ years at your age, compared to years ago when 10 year survival was the norm.

2. The third generation ones have new anticalcification treatments, trialled in animals, which show great promise of extending the lifetime - though this isn't a certainty.

Bob H on this board has the Mosaic valve - a third generation one with 10 years of follow up and with results showing some definite reduction in calcification compared to its predecessor, the Hancock.

Perhaps also, though, the mentality of people has changed. Even though ACT is better managed these days, maybe more people are less accepting of the need to manage ones lifestyle in any way.

 

[Ross]

Perhaps also, though, the mentality of people has changed. Even though ACT is better managed these days, maybe more people are less accepting of the need to manage ones lifestyle in any way.

This statement is going to bother me until I'm dead. If there were not so misinformation about ACT out there, there wouldn't be any big deal about life style changes. I only know one or two people out of hundreds that have changed their lifestyles and it's because they chose to do so. The rest of us are doing what we always have and always will.

 

[Karlynn]

maybe more people are less accepting of the need to manage ones lifestyle in any way.

Not really even in the context of ACT (Anti-coagulation Therapy - which means anything that deals with anticoagulation - even taking a baby aspirin every day is ACT) but looking at this in a broader way, the fact that this statement seems to be coming more and more true period - bothers me. My children went to college with many people who took this approach of not managing their lifestyles in any way. My husband works daily with some that take this no-managed-life approach. It's not necessarily a positive, free, way of dealing with one's own life.

Sorry for the thread hijack - just thought I'd give my first thought in reading that quote. I guess I'm getting old - the young people these days.....!

 

[Lynlw]

you know you have a point, Karin, i see that alot w/ my nieces and nephews and their friends, yep i must be getting old too Lyn

 

[DeWayne]

I did find some info from the Cleveland Heart people that said a recent study into the tissue valve was showing excellent results at 17 years and I believe that was on generation 2 valves. My surgeon was talking in terms of a 3rd generation tissue valve. When I asked him if he was me (sort of put him on the spot) he said he would more likely pick a tissue valve, but that is was because he didn't think he had the discipline to handle what it took for coumadin etc.....

Then you add 20 years of new technology, it might not be as big a deal to change a tissue valve in 20 years as it is now.

I will probably drive myself insane before I get to the operating table!

 

[Ross]

Being that you've already had one surgery and this is your second, I'm inclined to say go mechanical and avoid a 3rd surgery if possible. Im for anything that keeps you off the table again, but that may not be what you choose to do. The only wrong choice is making no choice. It's pretty hard to blow this one.

Not to pry on the mechanical/Coumadin issue, but why would your Doctor not think that your not capable of dealing with Coumadin?

 

[DeWayne]

Not to pry on the mechanical/Coumadin issue, but why would your Doctor not think that your not capable of dealing with Coumadin?

Actually he said that of himself, not of me.

 

[Ross]

I wondered because geesh all you have to do is take a pill once a day. It's not like it's all time consuming or crazy or anything. I take mine when I get my first cup of joe in the morning.