Trying to learn "my place" in all of this

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As for HAVING to take Coumadin with arrhythmias, that simply isn't true.
I've had arrhythmias my whole life and have NEVER required Coumadin for them.

Kim

From my post to the AntiCoagulation Forum from June (or July) 2008:

Patient Demographics at My Coumadin Clinic

The recent thread / poll asking how many Tissue Valvers were on Coumadin made me curious about the Patient Demographics at my Coumadin Clinic so I asked the Charge Nurse for their numbers.

MY Coumadin Clinic Patient Demographics are as follows:

328 Patients with Heart Valves - presumably mechanical? = 11.4%

2000 Patients with Atrial Fibrilation = 69.4%

552 Patients with other factors (DVT, Clotting Disorder, etc.) = 19.2%

2880 Total Patients served by 4 Certified Registered Nurse Practicioneers (CRNP) and several Technicians and other staff members in Huntsville, Alabama, "The Rocket City" (Home of NASA's 'Rocket Team', The Redstone Arsenal, and a lot of Low, Medium, and High Tech Industries).

'AL Capshaw'

(Yes, I realize this does NOT answer the question about what percentage of Tissue Valvers are on Coumadin, but it does point out that the vast majority of patients on Coumadin are on it because of Atrial Fibrilation and to a lesser degree, Deep Vein Thrombosis - DVT, and Clotting Disorders).
 
Al, Most people who are in a-fib are elderly, most of whom, I'm willing to bet, have never had heart surgery. In fact, my husband has an elderly aunt and uncle who are almost constantly in and out of the hospital for a-fib. Neither of them have ever had any kind of heart problem their whole lives.

What is the age of your 2000 people in a-fib? I'm willing to bet the vast majority of them are elderly. (From the Heart Rhythm Society: More than 2 million people in the U.S. have A Fib, and about 160,000 new cases are diagnosed each year. A Fib is uncommon among young people, although it can occur in people of any age. The likelihood of developing the condition, however, increases as we get older. After age 65, between 3 percent and 5 percent of people have atrial fibrillation. Approximately 9 percent of people who are age 80 or older have the condition). Have they had heart surgery of any kind, much less valve surgery? Some probably have, but nowhere near the majority I think you are trying to insinuate.

My statement that you quoted was in reply to hook's: With additional open heart surgery you keep increasing your risk for various arythmias. Once you get these you will be on ACT anyway Which is just not true. That is just trying to cause fear about getting a tissue valve ("oh, you'd have to be a complete idiot to get a tissue valve to avoid coumadin because you are going to have rhythm problems and then you'll be on it anyway because all rhythm problems require coumadin").
 
QUOTE=Ambriz;470456]Thanks, I'm glad you posted because I was afraid what I said bothered you. I'm trying to read about the coumadin as much as possible. The drug sounds scary but watching my mom on it and it didn't seem to bother her much outside of a couple of nosebleeds and having to make trips to the doctor to get some things checked, so maybe I'm making a mountain out of a molehill. I still think that if i were facing this and had to choose that I would go for the biological one. So sometimes I'm confused and amazed that the idea does not seem to bother my husband at all.[/QUOTE]

It is perfectly reasonable to want a tissue valve in your 40s to avoid coumadin and prefer to take the chances with another surgery, and the risk that go with that, over a mechanical valve and the need for coumadin and the risk that go with that choice.
Just as there ARE risks with surgery and REDOs, there also ARE risks with choosing a mechanical valve and needing to take Coumadin. As long as you take the pills and keep your INR in range, you can lessen the risks, but I wouldn't compare taking coumadin to the other meds you often will have to take when you get older. It does have more risk than many other drugs.Just like you have to consider the risks of surgery and REDOs, and learn all the facts about that, the same should be said about the risks of taking Coumadin.

IF you are choosing to get a tissue valve in your 40s, you most likely WILL need at least one more surgery. Right now today, the risks for a 2nd surgery are about the same as a first, and IF you go to a center surgeon who operates on patients that are having multiple REDOS (2nd, 3rd, 4th OHS) your chances of a full recovery are even better. IF you are getting your first valve right now, chances are IF you chose to get a tissue valve, the stats for REDOs will be even better when this valve needs replaced, as more and more surgeons and CICU staff get even more experience with patients who have had MULTIPLE surgeries.Right now at the centers (Usually Congenital heart surgeons/centers) that do multiple REDOs on very complex surgeries the stats are just as good for the 3rd or even 4th OHS)surgery. Altho chances are it would be a while before someone getting their valve now needs a 3rd OHS, for any reason not just to replace this valve.
REDOs make more work for the surgeon, but experienced ones, even IF they run into problems know what to do, with out even having to stop and think, to lessen your chances of dieing or having long term problems. For the majority of people the recovery for a 2nd or 3rd surgery (with experienced surgeons) shouldn't be much different than 1st time surgery. But even if you have a major complication, longer recovery, you usually do have a full recovery.

Unfortunately I have alot of experience with both of these cases. My son Justin has had his chest open 6 times (5 OHS, an infection) He also has had to deal with numerous BIG complications, BUT after his longer than normal recovery, he does well (knock on wood) so I don't take any of this lightly, I know how awful it can be.
OF course I wish he never needed any surgery and hope he doesn't need any more in the future, right now pulmonary replacemnt by cath are already FDA approved, so chances are when this valve needs replaced it will be by cath.

For someone chooising their first valve now, if you choose a tisue valve, when this valve wears out, you can then decide what valve would be better for you from the options that are available then, choosing a tissue valve now, doesn't necessarilly mean you are signing up for a 3rd ot 4th OHS depending on your age. Also Chances are by the time this valve needs replaced, if percutaneous valve replacements still aren't common, IF you have alot of medical problems that would make you a higher risk , you most likely could have it replaced in the cath lab, since right now they are replacing high risk patients valves by cath.

BUT it IS heart surgery so will always have risks, Caths have risks too. Even perfectly healthy people who should do great, can die or end up with lifetime complications. The chances are small, but there are still risks. The best anyone can do is to do your homework and give yourself or loved on the best chance possible.
Many people chose to have a mechanical valve to lessen their odds of needing another surgery, but for many other they prefer the risks of another surgery, over the risk of a mechanical valve and Coumadin. The percentage of people choosing tissue valves at younger ages is increasing over the last 5 years.

Coumadin also has risks. Right now today having a mechanical valve, lessens your chance of needing a REDO but increases your chances of having a clot, so you have to take Coumadin to lessen those chances. But there is still a chance you can have a clot and stroke. Since Coumadin helps prevent clots, it increases your chances of having a bleed. Making sure you take your pills every day and keep your INR in range, lessens your chances of having a major bleed or clot, but there is still the risk. Home testing has shown to be better at keeping patients in range, but even if your INR is perfect, people still can have a bleed or stroke. Stats show people who are on Coumadin, have an increased risk of mortality with traumas to the head and brain bleeds. It doesn't have to be a big trauma, even a fall from standing, has increased mortality rates for people who's INR are in range, especially as you get older than 60. The chances are small, but there is the risk. Internal bleeds are the bleeds most people worry about with Coumadin, not cuts, even major cuts, they can always be stopped and if you need blood, you still will have a great life after you recover. With internal bleeds, since you don't see the blood alot of damage can happen before anyone even realizes they have a brain or internal bleed. The risks of death are low, and even with most internal bleeds you will do fine after recovery. but there is still a risk you won't. Anyone can have a brain or other internal bleed, but the risks of mortality increase if you take coumadin, even are in range.

Beside the bleeding risk there also is the risk of a clot if you have a mechanical valve. Keeping your INR in range lessens the odds of a clot or stroke, but there is still the small risk.
IF you take Coumadin, and have other medical problems, or need surgery or take certain meds, Coumadin can make it a little more difficult. Most things can be worked out, like you may have to bridge (stop coumadin a few days before surgery and take Lovenox shots or heparin, to protect you from clotting, as much as possible, so they can stop it and lower your INR to operate and right after the surgery, without the risks of a major bleed) They are doing more and more procedures with out making you stop Coumadin, but it is still something that people consider when choosing a valve. Especially if they have some issues that they know will be more complicated to treat if they also take coumadin.

Many people choose a tissue valve, to hopefully avoid Coumadin and the risks that go along with it,or don't want to deal with testing or clicking, but many people as you can see from members here, are very happy with their mechanical valve and rather deal with the small increased risks of bleeds or clots to lower their chances of needing another OHS.
Also just as the risks of surgery are getting better and there is a chance you MAY be able to avoid a repeat surgery by having a percutaneous valve replacement when your tissue valve needs replaced. (which most likely won't be the case if your mechanical valve needs replaced for some reason, that would still need open heart surgery for the foreseeable future)
Right now today, there are trials going on for the ON-X valve to see if lower risk patients would be able to either keep their INR lower (which would mean they need less Coumadin) or they might be able to just take Plavix and aspirin, which still of course has some risks.

They are also working on drugs to replace Coumadin, which wouldn't need the testing, but since they prevent clots, still have some risks of their own.
SO as many others have said, valve choice is a very personal thing, even tho the stats are VERY good no matter what choice you decide, each choice DOES have risk. Some people rather live with the risk of REDO surgery, others rather take the small day to day risk of a mechanical valve and coumadin.
 
Some of our members have researched the long term results for Tissue Valve and Mechanical Valve recipients, including TobagoTwo who is an outstanding researcher. My impression was that the long term risks / results were similar for Both Mechanical and Tissue Valves.

The unfortunate truth is that there is NO Perfect Artificial Valve, but we DO have several Very Good Options. There have been significant technological advancements in both Mechanical and Tissue Valves. Hopefully, we will know how well they worked out in another 10 or 20 years. IMO, it is in the Best Interests of patients to educate themselves about the risks and benefits of each option and select the option they feel they can best live with.

Lyn outlined several of the risks of being on Coumadin. Most coumadin patients who keep their INR within (or close to) their recommended range have few problems in their daily life. Dealing with further surgeries can be 'challenging' but is managable with skilled surgeons and proper planning.

Lyn also suggested that multiple surgeries are 'not a big deal' for experienced surgeons.
That may be true for SOME. I personally know patients that have been told they would likely NOT SURVIVE a 3rd (or 4th) Surgery. These are typically patients who have complex issues and/or other co-morbidities. The Question to ask is: "Are YOU willing to 'bet your life' that You will be one of the Lucky Ones who can withstand multiple surgeries without major consequences?"

Ultimately, we ALL must take a "Leap of Faith" and Hope for the Best.

'AL Capshaw'
 
Some of our members have researched the long term results for Tissue Valve and Mechanical Valve recipients, including TobagoTwo who is an outstanding researcher. My impression was that the long term risks / results were similar for Both Mechanical and Tissue Valves.

The unfortunate truth is that there is NO Perfect Artificial Valve, but we DO have several Very Good Options. There have been significant technological advancements in both Mechanical and Tissue Valves. Hopefully, we will know how well they worked out in another 10 or 20 years. IMO, it is in the Best Interests of patients to educate themselves about the risks and benefits of each option and select the option they feel they can best live with.

Lyn outlined several of the risks of being on Coumadin. Most coumadin patients who keep their INR within (or close to) their recommended range have few problems in their daily life. Dealing with further surgeries can be 'challenging' but is managable with skilled surgeons and proper planning.

Lyn also suggested that multiple surgeries are 'not a big deal' for experienced surgeons.
That may be true for SOME. I personally know patients that have been told they would likely NOT SURVIVE a 3rd (or 4th) Surgery. These are typically patients who have complex issues and/or other co-morbidities. The Question to ask is: "Are YOU willing to 'bet your life' that You will be one of the Lucky Ones who can withstand multiple surgeries without major consequences?"

Ultimately, we ALL must take a "Leap of Faith" and Hope for the Best.

'AL Capshaw'

Yes the risks ARE about the same long term which ever valve you choose. The risks of life long coumadin is the same as facing multiple surgeries. Which is why one choice is not better for everyone. I outlined BOTH the risks and ways to lower them for BOTH valve choices.

I did NOT say they were no big deal for the surgeon...
"REDOs make more work for the surgeon, but experienced ones, even IF they run into problems know what to do, with out even having to stop and think, to lessen your chances of dieing or having long term problems."
http://ats.ctsnetjournals.org/cgi/reprint/86/3/897
Repeat Sternotomy in Congenital Heart Surgery:No Longer a Risk Factor

and yes people that have already had several surgeries can be told they will not survive another surgery, usually because of other things their bodies are dealing with. MY Mother had 2 heart surgeries and had many problems because she had COPD going into her AAA and never got off Oxygen for her CABGs, she could not have had another surgery.
Actually people who have NEVER had any heart surgery can also be told they can not have surgery because they wouldn't survive it, because of other medical problems. (I believe that 101 year old lady that just had her valve by cath didn't have previous surgery, but could be wrong)
But when talking about someone who has NOT had their first surgery yet, by the time THEY need a 3rd surgery..IF they ever do-High risk patients most likely will avoid surgery and have their valves replaced in the cath lab (like high risk patients CAN today) BUT the facts are the vast majority of people 97% survive their 1st 2 surgeries.
Can anyone know IF they will be one of the ones who has many other health issues or doesn't make it thru any surgery? of course not ALL surgeries have risk.

JUST like most people do perfectly fine have a full recovery after surgery, MOST people do fine on Coumadin. But like surgery risk, the risk of a major, life threatning bleed is about 1-2% each year. The risk of a major clot or stroke i s also 1-2% each year.
Just like you asked about will you be willing to bet your life that you can be one of the people that can withstand multiple surgeries without major consequences (I took out you calling them the "lucky ones", because I know of hundreds of people that have made it thru 3 or more OHS and are doing fine, , I personally know of WAY MORE people that survived Multiple surgeries than who didn't and these are VERY Complex surgeries, the most complex heart surgeries there are) People also have to ask themselves IF they are willing to bet their lives that they can take coumadin every day for years and will not be one of the people who ends with a major brain bleed or massive stroke one day.

Some people rather take their chances during surgery...others rather take their chances day to day with coumadin.
 
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Where's my bag of meds?

Where's my bag of meds?

If it's any consolation, I don't pack a bag of meds around with me (and I say this with humor intended). Sure, I've got a bottle of 5 mg coumadin pills, a bottle of 2.5 mg coumadin, and a bottle of Diovan (BP med). I really doubt that I need the Diovan any more. The only time my blood pressure goes up is when I visit my cardiologist.

Last weekend, I flew to Denver for a wedding. Those pill bottles simply flew with me in my carry-on when I left Phoenix. I dropped the bottles in my regular suitcase for the flight back. No hassles, no bother, other than setting off the metal detectors in both airports when going through the security check points.I think those wires in my sternum aren't very high quality stainless steel.

As Al noted in one of his posts, your initial post indicated concerns which are related to valve choice and a lifetime of coumadin use for your husband. In all honesty, I'd be concerned if you weren't interested in playing a role in the decision-making process. As you've seen through responses to your initial post, many of us tend to be passionate about the various issues surrounding valve choice and coumadin use. Please don't be overwhelmed by the dialogue we engage in concerning these topics.

Opinions vary and people are entitled to express their opinions (I think hearing different opinions and perspectives is what people want when they come here and ask questions), but personally, I believe it's important to remember that there are no bad choices if the choice results in prolonging one's life.

I've had nose bleeds that have lasted for hours and I've never bled to death. While riding my bike in 2009, someone hit me with a car. I was unconscious for a half hour and was diagnosed with a traumatic brain injury. I totally lost the entire month of July in 2009 because of the injury and had an assortment of broken bones, bruises, and road rash. For some reason, I escaped with no major brain bleeds. I continue to pursue activities what tend to be somewhat rough and tumble. Now, is my experience a guarantee that someone else could exerience what I have and not have problems... of course not. But then, just because someone else has problems related to coumadin use is not a guarantee that someone else will have the same kinds of problems. The only guarantee that comes with OHS is that there are no guarantees.

Unfortunately, there are many misconceptions out there about coumadin. My grandfather was on coumadin in the later years of his life to deal with bloodclotting issues in his legs. He insisted on shaving with an electric razor because he was afraid a nick or cut while he was shaving would result in him bleeding to death. He passed away at age 95. His death was not related to any medications he took. Now where would an intelligent guy like him get the idea that a cut with a razor blade while shaving would make all of the blood run out of his body? He was never concerned with developing a brain bleed.

-Philip
 
I got my valve at 38 and it's a mechanical valve. Slow me down? I say BLAH BLAH. I had my valve replaced in early November of 08. In June of 09 I was aboard a 50 foot boat in the middle of Tongass National Forest in Alaska at least 2 days travel time from the closest Cardiac care facility. I was up there hunting bears. I was tracking and running after bears on average 3 miles a day. The fact of the matter is only limitation you have are the ones you give yourself. My only problem with ACT is my pumphead brain forgets to load the pill box for the week. So my wife fills it every Sunday night. My wife expressed her concerns about valve choice with me, but ultimately she told me it was my body and that I had to do what was right for me and my family.
 
Hi, I had a repair so do not have any experience with replacements. But I choose tissue as a back up after my surgeon told me by the time I needed to replace it they would be replacing them through catheters. I didn't want to be on coumadin either. Well after the fact I would go back and choose mechanical. Not because of the risks of surgery but because of the unpleasantness.
 
Yes the risks ARE about the same long term which ever valve you choose. The risks of life long coumadin is the same as facing multiple surgeries. Which is why one choice is not better for everyone. I outlined BOTH the risks and ways to lower them for BOTH valve choices.

I did NOT say they were no big deal for the surgeon...
"REDOs make more work for the surgeon, but experienced ones, even IF they run into problems know what to do, with out even having to stop and think, to lessen your chances of dieing or having long term problems."
http://ats.ctsnetjournals.org/cgi/reprint/86/3/897
Repeat Sternotomy in Congenital Heart Surgery:No Longer a Risk Factor

SNIP

Some people rather take their chances during surgery...others rather take their chances day to day with coumadin.

I checked out the study referenced above and discovered that the data came from a study of mostly Congenital Heart Disease patients under the age of 20, with 80% of the cases between age 3 and 10 years.

I would expect different results when looking at the ADULT population, especially the more 'Elderly". I acknowledge that second surgeries seem to have very good results, approaching the risk levels of first time surgeries, but it is my (non-professional) understanding that risks of morbidity and mortality for OHS #3 and higher DOES increase by a not-insignificant amount in the adult population.

'AL Capshaw'
 
I checked out the study referenced above and discovered that the data came from a study of mostly Congenital Heart Disease patients under the age of 20, with 80% of the cases between age 3 and 10 years.

I would expect different results when looking at the ADULT population, especially the more 'Elderly". I acknowledge that second surgeries seem to have very good results, approaching the risk levels of first time surgeries, but it is my (non-professional) understanding that risks of morbidity and mortality for OHS #3 and higher DOES increase by a not-insignificant amount in the adult population.

'AL Capshaw'

Before I start, of course everyone is different and not everyone will have the same results and any surgery DOES have risks but for the majority, especially IF they go to surgeons with experience in REDOS, this is pretty much what, I have learned or been told by several patients/parents who consults several centers, surgeons cardiologist
Also I am NOT saying REDOS are NOT risky..they ARE. Any surgery has risks, BUT my point is mechanical valves/coumadin also Have risks, so each person has to decide which risk they prefer, since both choices come with risks that are about the same..

From every surgeon I spoke to the past 20 years, The main risk with REDOS, especially multiple REDOs is scarring, both when they are cutting threw the sternum/getting to the heart and operating on the heart itself, especially if you are replacing a part that was operated on before. THAT risk is the same no matter what the age of the patient.
.Altho I personally would think it would be a little more difficult on the younger/ smaller children, where it is harder to see everything since their chest are just so small (When Justin had his 2nd surgery at 18 months his heart was a little bigger than a walnut, so you can imagine how small the arteries and veins were) Since Many complex CHDs require multiple REDOS before they are even adults, these are the surgeons for the most part that have the most experience with multiple REDOS and figure out the safest ways to operate and take care of the patients in ICU and everything they've learned in the past 20 years helps all patients who need REDOS. OF course like ALL surgeries IF you need a 3rd surgery, you should do your homework and go to the surgeons who do many multiple REDOS weekly, just like if you have an Aortic anneurysm you should go to the specialists to get the best results.

AS for Adults and what their results are right now, again I am sure alot has to do with where you go. but right now CCF does mainly Adults and about 1/3 of their surgeries are REDOs..they didn't break down what # REDO the surgeries were, http://my.clevelandclinic.org/Documents/heart/OutcomePDFs/25_Valve_Disease.pdf
but their overall stats for all OHS are very good and many of their pateints are people who travel there because their surgery is risky or more complicated than most. Many of the other larger centers that mainly treat adults, also have very good over all stats, even tho many of their patients are having REDOS..
Most of the people I personally know of that have 3 or even 4 surgeries are children or adults with CHD and even for the adults..most surgeons tell them, the surgery is harder on the surgeons but as long as he goes slow and careful the chances of full recovery are the same no matter what number surgery it is.

Most of the studies done on REDOS are a majority of CHD patients since most of the people who need multiple surgeries ARE CHD patients, (since chances are IF you are 40 when you need your first valve replacement, even IF you choose a tissue valve you probably won't need MANY more OHS,(of course there will be some). For the MOST part, The people that need to have the most OHS are the ones born with complex CHDs, since many need 2 or 3 staged surgeries right from the beginning.

YES in this study "Repeat Sternotomy in Congenital Heart Surgery: No Longer a Risk Factor" the majority of patients were younger, the oldest was 45. BUT for the most part they also were having much more complex surgeries - (altho 72 were repeat AVRs) from the study- All RS (repeat sternotomy) between October 2002 and August 2006 were analyzed (602 RS in 558 patients). Median age was 3.6 years (range, 0.1 to 45.1); weight, 14.2 kg (2.0 to 112.2). Operations performed at RS were Glenn 22% (131), Fontan 21% (129), aortic valve repair/replacement 12% (72), right ventricle-pulmonary artery conduit 11% (67), Rastelli 7% (39), heart transplant 5% (31), and other 22% (133). Forty-seven percent of patients (280) had single-ventricle physiology. Incidence of second sternotomy was 67% (406), third 28% (166), fourth 4% (24), fifth 0.8% (5), and sixth 0.2% (1). A major injury upon RS was defined as one causing hemodynamic instability requiring vasopressor support or emergent transfusion; femoral cannulation or emergent cardiopulmonary bypass; and any morbidity. A minor injury is any other injury during RS.


(Me not part of study) 1/2 the patients were single ventricle patients, that for the most part makes them higher risk /harder to recover from than MOST, but of course not all, valve replacements.

" Results: The incidence of a major injury was not different between RS (0.3%; 2 of 602) and first-time sternotomy (0%; 0 of 1,274; p > 0.1). Incidence of a minor injury was 0.66% (4 of 602). No injury resulted in hemodynamic instability, neurologic injury, or death. Two patients (0.3%) required a nonemergent blood transfusion secondary to injury. (Nonemergent was defined as adminstration rate of less than 0.2 cc/kg/min and less than 10 cc/kg in total.) Femoral cannulation was performed in 4 of 602 RS cases (< 0.6%). Sternal wound infection was 0.5% (3 of 602); reoperation for postoperative bleeding was 1% (8 of 602). Median intensive care unit stay was 3 days (1 to 174); median hospital stay was 7 days (1 to 202). Hospital survival was 98%.

Conclusions: Repeat sternotomy can represent a negligible risk of injury and of subsequent morbidity or mortality. Therefore, the choice of management strategies for patients should not be affected by the need for RS." http://ats.ctsnetjournals.org/cgi/content/full/86/3/897#FIG1


OF course people can still die or have life long problems from a first surgery. In MY opinion, just as the risks for REDOs have gotten so much better in the last 20 years as more and more of the babies with complex CHD were surving and surgeons learned the safest ways to perform REDOS to the point that they are as safe as they are right now with experienced surgeons, For someone having their first surgery NOW by the time they need their 3rd surgery (IF they ever do) The stats will be even better for everyone as more and more surgeons have experience with REDOS. Plus IF you are just getting your first valve now, like many/most people who join here and are asking questions, by the time THIS valve wears out especially IF for some reason they have other health problems happen that would make them higher risk, they would MOST LIKELY be able to avoid surgery and have their (2nd or 3rd) valve replaced in the cath lab.
 
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I have remained silent till now .....what changed .......I was at the renal failure clinic yesterday and found out that my kidneys are failing and my better 3/4's was not there and a barage of questions came after she got home from work that I could not answer as this sternumless diabetic with CABGx5 and MVR was so stunned he blanked on the info being given.....always be there for him and you can then answer his questions or reasure him with his perceptions
 
I have remained silent till now .....what changed .......I was at the renal failure clinic yesterday and found out that my kidneys are failing and my better 3/4's was not there and a barage of questions came after she got home from work that I could not answer as this sternumless diabetic with CABGx5 and MVR was so stunned he blanked on the info being given.....always be there for him and you can then answer his questions or reasure him with his perceptions
:( I'm sorry to hear what you are going through, but happy you have someone by your side.
 
Before I start, of course everyone is different and not everyone will have the same results and any surgery DOES have risks but for the majority, especially IF they go to surgeons with experience in REDOS, this is pretty much what, I have learned or been told by several patients/parents who consults several centers, surgeons cardiologist
Also I am NOT saying REDOS are NOT risky..they ARE. Any surgery has risks, BUT my point is mechanical valves/coumadin also Have risks, so each person has to decide which risk they prefer, since both choices come with risks that are about the same..

Before the development of INR Testing in the early 1990's, there was a LOT of Variation in the measurement of clotting times due to variability in the reagents used. I'm guessing that most of the Horror Stories about Coumadin originated BEFORE INR Testing was developed. Since then, anticoagulation management has improved GREATLY when managers are properly trained and 'up to date'.

I don't recall reading of any Fatalities from Bleeding Issues in these forums, but we have had several Fatalites from Surgeries and several patients who had to have valves replaced because of Stitching Failures (possibly because the first surgeons didn't know how to deal with Connective Tissue Disorders). There have been a few cases of Strokes which were attributed to Poor Anticoagulation Management.

In the Vallve department, I only recall a couple of members who had to have mechanical valve replacements but several "Early Failures" of Tissue Valves have been reported after only 1 to 7 years.

As Lyn pointed out, patients have to decide which risks they choose to live with.

'AL Capshaw'
 
Before the development of INR Testing in the early 1990's, there was a LOT of Variation in the measurement of clotting times due to variability in the reagents used. I'm guessing that most of the Horror Stories about Coumadin originated BEFORE INR Testing was developed. Since then, anticoagulation management has improved GREATLY when managers are properly trained and 'up to date'.

I don't recall reading of any Fatalities from Bleeding Issues in these forums, but we have had several Fatalites from Surgeries and several patients who had to have valves replaced because of Stitching Failures (possibly because the first surgeons didn't know how to deal with Connective Tissue Disorders). There have been a few cases of Strokes which were attributed to Poor Anticoagulation Management.

In the Vallve department, I only recall a couple of members who had to have mechanical valve replacements but several "Early Failures" of Tissue Valves have been reported after only 1 to 7 years.

As Lyn pointed out, patients have to decide which risks they choose to live with.

'AL Capshaw'

Yes they have only been using the INR for close to 20 years, I'm sure some doctors still remember horror stories from then, but many were pretty young when they changed to the INR or weren't doctors yet.
The stats with problems with Coumadin, how your chance of a stroke or how your chances of doing worse with a trauma or fall even IF your INR is in range. usually are pretty recent. Coumadin still makes the lists for most dangerous drug, based on actual reports from ERs, Death certificates ect. I DO expect them to improve as more people move to home testing ect.

Just like I'm sure many of the studies showing the results long term are the same, were based on when REDOS had much higher risks. I believe most studies show the stats of not surviving surgery are about 1-2% and right now the chances of a Fatal bleed are about 1-2% AND the chances of a clot/stroke are also 1-2%

AS for VR members, it is such a small % of valve replacements and so many people leave shortly after they recover from their surgery (IF they survive it) That it would be hard to tell much from how many members here passed from a brain bleed or Stoke oe had major problems because they weren't bridged properly for what should be a small easy procedure.
Just like VR has only been around 10 years, so most likely we don't hear of all the people who have ANY kind of valves longer than that or haven't had any problems due to either coumadin or REDOS. We DO have a few members who have had multiple surgeries and have very active lives.
 
I have had both a tissue and most recently a mechanical valve. I was very glad I had the tissue valve and do not regret having it at all. That being said, I am happy that I went mechanical this time. Family concerns were a big part of this as well. Although getting my INR levels to where they need to be is driving my doc nuts, my quality of life is unaffected, and most importantly, I may not need a repeat surgery like I did with the tissue valve. My fiance and I sat down and talked about it, as well as with my surgeon (although he was very much in the mechanical camp to begin with ;) and decided on the mechanical in large part because we want to have kids and do not want to have her to have to deal with raising kids and dealing with a possible re-operation again in the future, especially given the risks involved, not to mention all the post-op issues I had with the second surgery. As for lifestyle, I'm getting back into martial arts, finishing up my SCUBA certification soon, eating greens, drinking beer, going to the gym and generally making my doc as nervous as possible in a good way. So as far as ACT therapy goes (don't you love all these little abbreviations all over the place in these forums :) there are absolutely no drawbacks. Even drinking less than I used to is NOT a bad thing.
So as far as getting family involved in decision making, sure, it's personal, but as a heart surgery patient, I think it is selfish not to include family members in the decision process to some degree. After all, I was asleep for the whole process. My fiance and family were the ones had to sit outside in the waiting area for almost 10 hours not sure if I was coming out or not. (there were a few intra-operative issues my surgery team had to deal with; they did a great job too)
Anyway, just my 2c.

--Dan Weber
 
My husband has an appt on Nov 18th to talk to the cardiologist. I have to work and can't get out of it, so I'm going to get a list of questions together today.
 
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