Help with my decision

[ross3]

I need to come up with a valve decision for my surgeon by Friday morning and am really on the fence.

Obviously, the biggest potential downside to a mechanical is the statistical evidence that shows a greater risk of stroke or bleeds. I have a personal theory (& hope) that the adverse character of these statistics may not be as relevant to those who are diligent in keeping their INR within the target range. That?s because there are lots of people who aren?t as careful about their health issues as members of this forum and they compromise a significant portion of the studies.

The other negative to a mechanical valve is ACT. It?s hard for someone in my position to assess what this is like other than what can be gleaned from reading through the anti-coagulation threads. This probably isn?t that great a means of ascertaining what ACT is like because a lot of the threads are problem centered (nose bleeds, jumping levels, etc.). Naturally, this is to be expected because people will write when they need help but not so much when everything is going perfectly.

Anyway, I?d appreciate hearing from those who are on Coumadin about the experience. Since you are actually living it you are THE experts on what it?s like. I?m particularly interested in learning about whether (knowing what you know now) would have affected your valve choice ? if you could go back in time

 

[Cooker]

Hello Ross3...

I don't usually chime in on this type of thing but I am feeling particularly honest tionight.....My experience with ACT has been a piece of cake....I have been in range every since two weeks post surgery...I take 5mg a day and that has remained the same as well....My St Jude valve seems to serve me well...

............now for the kicker.....and this will not help.....If I had to do it over again I might (good chance) that I would go tissue,,,,ACT is no big deal other than testing (once a month for me)....But as I get older the chance for and need for procedures that would require bridging increase...that does not bother me except that is when I feel the rick of stroke increases drastically for me.....My AVR went as smooth as silk so I do not fear a second surgery...I might not feel this way if I had a rough time.....I most likely will not get the chance to make this decision again.......choose well my friend.

 

[geebee]

Well, I have been on coumadin for 28 years (half my life now) and it has truly been a non-issue for me. I have had 3 major and 2 minor surgeries since going on coumadin, a tooth pulled, lots of dental work and a few injuries that healed just fine. My activities over the years include sail boat racing, scuba diving, off and on road motorcycle riding, horseback riding, etc.

In 1994, I had my original valve replaced due to symptoms that might have indicated a strut failure on my recalled valve. I could have chosen a tissue valve but chose another mechanical (St. Jude) because I wanted no more OH surgeries. My valve is working perfectly and I hope to have it for the remainder of my life (and I hope to live to be over 100).

I feel home testing is essential and a doctor that will work with you to eventually self dose is quite helpful also.

 

[Ross]

I nearly died through both of my surgeries, so going mechanical made sense to me. I will not be able to endure another major surgery, so I pray to God this one lasts my lifetime.

The largest drawback to ACT is the medical field itself. There are a bunch of so called managers out there that have no clue what their doing. We see it in here everyday. It's not rocket science and it's simple if you only understand how the drug works.

The other things that I consider to be inconveniences are, other surgical procedures because you'll have to come off Coumadin and be bridged with Heprin or Lovenox. The other, depending on your lifestyle, if you love to do insanely dangerous things or something where your head is going to take hits, Coumadin may not be for you. If you have no problem wearing a helmet and protecting your noggin, then I would say go and live your life as you wish. You definately want to give up sword fighting.

If you haven't done so, you need to see Al Lodwicks site at www.warfarinfo.com and get a little education.

Your right about statistical evidence. They studied the 60+ age group and you know some of them never question their doctors and some may not have the mental capacity to be left to take their pills without help.

Here is another link you might find helpful:
http://www.aafp.org/afp/990201ap/635.html

 

[dick0236]

In about one month my valve will be 41 years old. Obviously, for me the mechanical was a good fix and if I had to do it over I would make the same choice.

I believe that you are right in saying that a lot of the anti-coagulation problems are brought on by personal lack of understanding and management. In fact, I am one of those "statistical problems". A few years after my surgery, at age 38, I suffered a CVA (cardiovascular accident) that left me with a vision impairment. There is very little doubt that my mismanagement played the major role in that CVA. It got my attention and since that event 34 years ago I have had NO problems. With the help of a seven day pillbox and INR testing every few weeks (2 to 4) I have been able to maintain a safe INR. The anti-coagulation has NEVER been a problem. I have cut myself (stitches repuired on a few occassions), used a blade razor until very recently(electric convenience), suffered bruising with no adverse affect, etc. and just like any "normal" person, I try not to run with scissors(sp?). I have NEVER dieted around the drug but I use common sense and as you will see posted here, I "dose the diet".

If you feel you would rather not stay with a consistent regimen then Warfarin might not be a good fit for you. Regardless of your valve choice, the important decision is to get the problem corrected "sooner rather than later"

Good Luck

 

[Karlynn]

Just a little FYI for you. A properly anticoagulated mechanical valve carries the same risk of stroke as a tissue valve. So assuming that your ACT will be "proper" - there's the bleeding issue that doesn't share a stat with tissue.

I don't know your age, or know your family circumstance. But I was glad to not have to put my famiy through another valve surgery while my kids were at home. It was the busiest time of my life. My valve deterioration lead up to my MVR was hellacious, my recovery was long. I think I would have been in a depression had I known I definitely faced another valve deterioration and replacement.

ACT management has been a non-issue for me. I home test (or travel test) and do what I want to do. I give little thought to what I eat or drink because I'm on Coumadin. I garden, hit the road with my DH on our Harley on weekends and use an occasional chainsaw . I have never not done something I wanted to do because I was on Coumadin.

I may or may not need another valve replacement in the future. I just know that the life I've lead these past 16+ years have been wonderful.

If you do end up chosing a mechanical I would insist on home testing. (Mayo sends a lot of their mechanical patients home with monitors) It's really the best way to take control of your life and studies are showing that it results in fewer incidents and the best managed people.

The down side is that the US still has a large part of the medical community (some so-called Coumadin managers) that have no idea what they are doing. You are best off if you look on it as you would if you were diabetic. You learn to test and you learn to self-dose. It's not rocket science. (The proof being that I do it. )

I'm 49 now. If my valve needs replacing in the near future - I'd probably go On-X mechanical. Given my family lifespan history - anytime from 60 on, I'd probably go tissue.
Best wishes with your decision.

 

[MNmom]

Ive had both...

Ive had both...

I had a tissue valve put in when i was 20, after a failed attempt at a repair. At the time, we were told there was a very good chance that it could be repaired, so didnt think much about the other options- but settled on a tissue valve, since i didnt need any medicaiton, and was able to have 2 wonderful babies without any complications.
So now, 11 years later, my tissue valve needed to be replaced. I went for the mechanical valve, because I would prefer to be finished with OHS. Though the coumadin is a bit of a pain to get used to at first, it has now been five weeks, I am in range, and cant complain. I personally think, now that I am done having kids, it is well worth the minor annoyances that come with coumadin to know that my family and I do not have to go through another OH surgery.
It sure was worth getting the tissue valve to have my two kids though!
Hope that helps- just one humble opinion
Ingrid

 

[Guest]

This is kinda long....

This is kinda long....

I?d appreciate hearing from those who are on Coumadin about the experience. Since you are actually living it you are THE experts on what it?s like. I?m particularly interested in learning about whether (knowing what you know now) would have affected your valve choice ? if you could go back in time

Hi Ross3,

I will be 8 months post op on July 14th, chose the ON X valve, educated myself about ACT, and do not regret my decision, knowing what I know today. This is not to say that I did not struggle with my decision. My hopes are that the ON X clinical trials will prove that lower INR levels are possible, and that INRs under 2.0 are safe.

Before my surgery, I bruised easily because I have a platelet disorder where anti-bodies attach themselves and destroy my platelets prematurely. My counts went as low as 115K when I was sick, but I have maintained counts in the 140s and 150s over the last several years. This was a huge concern factored into my decision on valve choice. I consulted a top hematologist/oncologist who advised that if my platelets were to drop to 70K, they would have to intervene because I will also be on coumadin. Platelet disorders make a person high risk for spontaneous bleeding, the counts are monitored at least every 6 months in high risk people, yearly in people such as myself who have not had any problems with bleeding to date. So, platelet issues and coumadin issues were very unsettling to me.

Having the potential of a re-op several years down the road if I chose tissue was not something I was comfortable with. Ross procedure was considered but I didn't want to have 2 valve issues, and then at some point in my lifetime, even though it was an excellant option, have to have another reop.

I know there are no guarantees with mechanical valves, but from what I have read and discussed with my doctors, chances are my new mechanical valve will last the rest of my lifetime.

My hematologist/oncologist wanted me to check in with him after my surgery. I saw him in January. My platelet count jumped up to 160K, in spite of being on aspirin therapy as well as coumadin. My hematologist was pleased and so was I. I asked him if my heart valve could have been contributing to my platelet disorder and he said that he wrote a paper about heart valves and red blood cell destruction, so it's not totally impossible. I will be going for bloodwork during my annual physical with my primary care doctor next month. I'm still bruising but as long as my platelets stay elavated, I'm o.k. I cannot take high dose aspirin daily because aspirin puts your platelets to sleep for 10 days. I can take Advil and Aleve occasionally, but not continuously as they also create platelet issues, I tend to bruise more if I take Advil or Aleve for more than 2 or 3 days. You're not supposed to take them while on coumadin but sometimes a sore muscle needs it.

I'm an avid runner, I bruised easily before, and from running, I would bruise around my knees. I still bruise, it's still spontaneous, and I'm sure the coumadin effects it some because that is what the doctors have told me. I know what type and how many bruises to watch for so that I can seek immediate care if necessary. Even though I know this, I don't think about it longer than a few minutes when I see a new bruise. I go on with my life and do what I want to do. When a crisis occurs, if it does, I know what to do.

It takes a while to regulate your INR, everyone goes through it, eventually we get to where we need to be. Patience certainly is not one of my attributes. My INRs have leveled out and I have been consistently in range, 2.0 to 3.0 for several months now. My weekly dosage is 40 mgs. I test at home every 2 weeks and call in my INR monthly. No big deal. I do not minimize the risks of coumadin, but with the regimen I am following, I feel a lot safer than if I were to have to go into a clinic or my doctors office every month for the rest of my life. I cannot live in fear, I have confidence in my doctors, my own ability to recognize a problem when it appears, and whatever happens will happen.

I wish you good luck and peace with your decision. You will make the right decision for you.

 

[ALCapshaw2]

When looking at the "studies", remember, that INR testing did not come along until the early 1990's, greatly simplifying and improving Anticoagulation Management.

Before that, the guidelines were "cut back if you are bleeding or there is blood in your urine or stools" or increase your dose if you have a stroke. NO WONDER you hear so many Horror Stories from the 'good old days'.

That, and the fact that they FINALLY figured out that differences in the reagents used to analyze the blood draw (NO Finger Stick machines then either), caused considerable variation in the calculated Prothombin Times.

It would be interesting to see studies from the last 10 years when testing has been greatly improved. Educating the Testers is still the Achilles Heel of anticoagulation management.

Should you decide on Mechanical, I suggest you look over the On-X valve which is designed to reduce Clot formation (and other mechanical valve issues) compared with earlier designs from 30 years ago. See www.onxvalves.com and www.heartvalvechoice.com for more details.

Note that the FDA has authorized testing in the USA for Low Dose and NO Warfarin/Coumadin (Aspirin or Plavix instead) for the On-X valve in Low Risk Valve patients.

Even If the tests are not fully successful and On-X patients still require anti-coagulation, it seems to me that the design improvements offer reduced risks as shown by studies in Africa on non-compliant patient populations which showed reduced morbidity.

 

[ctyguy]

Ross3...

Im only 4 months post-op so I can't offer you alot of wisdom regarding Coumadin but I can say its been pretty much a non-event for me thus far. Mind you I haven't had any significant bleeds (knock knock) either.

I chose mechanical and have an On-X so Im hoping the clinical studies bear fruit. Maybe no Coumadin in the future or a lesser dose. But that really didn't play into my decision on mechanical versus tissue. Im 43 years old and have every intention of making it to 80 - 85. What drove my choice was the prospect of maybe having to face surgery again down the road, maybe more than once. Im a very active guy and I was concerned that my body would wear out tissue valves too quickly. Im in the gym several times a week, I've started running now with purpose and I didn't want to have to worry that by pushing myself physically that I was potentially impacting my valve by overusing it. That was a paradox I just couldn't deal with. So I will take my chances with todays medical technology and live my life the way I want to. If I have to have another surgery I will just have to show the same level of dilligence in preparing for it as I did for my OHS. Im the type who asks lots of questions and I keep myself well informed, Im the same way with Coumadin. Im not home testing yet but I've been pretty much in range since the surgery. Once I dipped below 2.0 to 1.8 but that was a simple fix as I tested a week later and was 2.4 On Monday I tested and for the first time I was above my 2.0 - 3.0 target (3.2). Im going back in two weeks and Im sure with the small dosage tweak they suggested I will be right back in range.

As you think through your choice, consider how active you are. If you were 10 or 15 years old then I think you choice is easier. But your at an age where you could face multiple re-ops theoretically.

Its not an easy decision so I wish you the best of luck !

Scott

 

[witzkeyman]

I think I would still go with a mechanical if I had to do it all over. IMO, the biggest drawbacks are not being able to take aspirin, supplements, and I miss peas, although Split Pea Soup doesn't affect the INR for some reason (according to a sheet the dietician at the hospital gave me). I bled one time because I shaved a pimple, and the blood didn't stop and got all over my pillows. right now, my biggest problem is getting on a cholesterol lowering drug that doesn't make my body ache.

 

[Ross]

According to what I read from Al Lodwick, there may be a replacement for Coumadin coming. I swear I read a post of his amongst all the hullabaloo where he said the doubted anyone would be on Coumadin within the next 10 years.

 

[Bridgette]

Do you know the name of the possible replacement for Coumadin, Ross?

Since the "Tussle" thread I have been doing a lot of serious thinking about mechanical vs tissue valves - yeah if I had to do it all over again I would still choose mechanical......I hated the operation, in an ideal world no-one should have to go through that experience.....

I don't care what valve people pick, that's their business, but I just think that once you've made your choice, got your new valve etc then be happy.....by all means post your personal experiences for others to read but DON'T keep inciting arguments by posting "statistics" about the dangers of Warfarin especially if you don't have any personal experience of using the drug.
And BTW I really admire people who choose tissue valves and have the courage to face the quite probable chance of a re-op down the track - and I would never give them an ear bashing or try to dissuade them.
Finally, there are people who didn't have a choice of getting tissue because they would need to be on Warfarin anyway due to A-Fib issues (I am one of those people) so that is another thing some people need to remember when they are posting stuff about Warfarin.
Ideally no-one would have to be on it, but once you are you just have to make the best of it.

Ok, that's my piece said

 

[Ross]

Bridgett no I don't. Were trying to get some confirmation from Al as to what he's speaking about. As far as I knew, all bets were off, but now he's saying something different and were confuzzled.

The rest of your post I and everyone here will agree with. I was put on Coumadin for what they thought to be a blood clot in the apex of my heart. When they did my valve, they found that it wasn't a clot, but a cyst. Nonetheless, people need to know that sometimes things go wrong and not every surgery is textbook perfect. Granted they may not have my 50 days in ICU experience, but there are other things that possibly may go haywire.

 

[ctyguy]

50 days in ICU ? Holy crap ! I knew from some of your posts that you had a hard time with both your procedures but I didn't know it was THAT bad ! Cudos to you for hanging in there and fighting through it, shows alot of moxie in my opinion.

 

[Ross]

Whoops, 60 days total! From July 22 to September 20, 2002

50 days in CSICU and on the vent for most of it, though they trached me after 10 days, then I went straight from CSICU to rehab where I was told it would be at least another month before I could be released. UNACCEPTABLE---I told them no way I'll be out in 10 days. Busted my butt and I did go home 10 days later. I had to relearn how to write and how to walk.

Things can go wrong, for me, it was staph infection from an IV line kit inserted shortly after surgery on day two. I was conscience and temp rose to 106. The hospital called my wife and told her that I wasn't going to make it, to get down there as soon as possible. They had given up on me, but not my wife. She made them get her tons of ice and towels and continued applying them all over until she got my fever down to 103 at which point, they made her stop so I wouldn't go into shock. They thought sure my brain fried because I did not come around. It took me a little better then 4 weeks to wake up. I remember it being opening day of football season and they kept asking me the score of the game. I couldn't keep my mind on anything much less the score. I was really screwed up.

I had this respiratory therapist walk in and asked if I remembered him. I hadn't. He said that he came in and sat with me holding my hand and talking to me after his shift ended nearly everyday. He said I'd look him in the face and just stare. He said he firmly believed that I was still in there somewhere and he wasn't going to watch me face it alone. He went on to say that I saw things in the room and attempted to talk to them, but no one else saw what I was following or trying to talk too, so they were interested in what I remembered. It was all a night mare for me.

Now you know why I'm overzealous about warning others!

 

[Karlynn]

Witz - eat peas! Eat whatever you want. Just don't go binging on a spinach salad every day for 7 days, raise your dose to adjust the INR, and then not eat the salad for another 3 weeks.

People who try to control their INR by what they eat are doomed to frustration and fluctuating INR's.

 

[catwoman]

Ross3:
You will have to make your own decision.

I made mine based on several things: My father-in-law went through 2 tissue valve replacements in 10 years' time; my grandmothers lived to 96 and 99.5 years of age and I still have my parent (ages 79 and 81.) I wanted to reduce the number of OHS, if possible, to only 1.

Like others here, biggest problem I see is misinformed or miseducated medical professionals.

I had a customer yesterday whose wife had taken warfarin, but the ACT managers kept tinkering with her dosage so much it was never stable. I told him that I home-test and adjust my own dosage and that even though the INR number itself may vary, I'm almost always in range.
He said that's the only way to do it and agreed that if diabetics can use glucometers and adjust their insulin dosage according to blood sugar levels, people on warfarin should be able to also with their Rx.
After all, it's not really rocket science.

I think I would still go with a mechanical if I had to do it all over. IMO, the biggest drawbacks are not being able to take aspirin, supplements, and I miss peas, although Split Pea Soup doesn't affect the INR for some reason (according to a sheet the dietician at the hospital gave me). I bled one time because I shaved a pimple, and the blood didn't stop and got all over my pillows. right now, my biggest problem is getting on a cholesterol lowering drug that doesn't make my body ache.

No aspirin? My cardio insists I take an 81mg aspirin every day. I had stopped taking it in the fall, and he recently told me to restart it.

Supplements? You **can** take those, you just have to adjust your warfarin dosage to accommodate any effects on its effectiveness. Since I home-test, adding any supplements or Rxes to my life is a snap: I test before starting something that might affect my INR, and then retest after about 3-4 days.

Peas? I eat green peas all the time. No problem. In fact, I eat anything I like. I don't avoid food just because they're on some list as no-no's for warfarin patients.

 

[Marty]

In the recovery room my surgeon dropped the disapointing news that he used a mechanical instead of attempting a repair. He said my valve was so beat up he doubted a repair would last two years.He said he discussed mechanical vs. tissue with his associates and finally he made the decision I was 72 then and now coming up on my 10th anniversary. These last 10 years have been the best in my life and its nice knowing I don't have to look forward to another mitral surgery.
Warfarin ? Fun and easy to manage once you get your own monitor. I actually believe warfarin is good for you if properly managed. My advice , pick a good surgeon with experience and judgement and let him/her make the decision. I often advise patients to ask their primary care doctor who they would choose to do heart surgery on them.

 

[ross3]

Thanks for your feedback!

Thanks for your feedback!

Thanks for the feedback ? everyone! This forum is such a great thing in that there are so many willing and interested to share their valuable knowledge. I found every comment to be very informative and really provide a view into that ?first person perspective? I was seeking.

Besides learning quite a bit about ?life on Coumadin? I am also amazed at some of the other things that have turned up on this thread to include Ross?s amazing story and dick0236?s 41 year old valve!

AlCapshaw2, I?d never heard that pre-1990 ACT wasn?t really managed in a scientific way. One can only imagine how far out of range people must have been without any means of measurement. Seemingly this could account for some substantial amount of adverse events (clots/bleeds) which would skew the older studies. It?s a wonder that this isn?t more prominently noted in the studies since it could bear so much on the outcomes and conclusions.

Marty ? it?s interesting that your surgeon chose a mechanical valve for a 72 year old because so much of what I?ve read suggests that the ?standard? at that time was for tissue > 65. Maybe your surgeon thought that you looked more like 62!

Ross