There's more than just valve disease to consider

[Andyrdj]

Well, folks, I've been recently treated for GERD (Gastro-Esophageal-Reflux-Disease) amongst other things, and possible stomach Ulcers.

So why am I posting this here in the valve selection section? Well, it's to illustrate a point I've touched on before - namely, that the selection of the correct valve for you depends on your overall medical condition, not just the health of your heart. Certain medications and conditions in this area seem to make Warfarin use a bit dodgy, in a nutshell. I will discuss this in detail when I know more about it.

In my case, I already have leanings towards tissue valves, and am hopefully going to last a few more years before the next operation.

I'd been concerned about pain in the chest region, although the ultrasound results seemed ok. It turns out that a number of stomach conditions can mimic cardiac pain very closely.

Suppose I had already made the choice, and had a mech valve implanted to avoid future operations, and was managing my ACT ok. A stomach bleeding event could have fairly serious implications! Furthermore, I think certain drugs used in treating stomach conditions are contraindicated by warfarin.

Furthermore, any operations you need to have whilst on ACT mean you will have to undergo the additional complications of bridging therapy.

I have used this one example which would suggest that in my case a valve requiring ACT might be a poor choice. Please, if you have any information on non cardiac medical conditions which make tissue valves a poor choce, feel free to add them to this discussion

But it makes the point - i.e that you should find out everything possible about yourself before committing to a given choice. If you're young, have a healthy heart, but are likely to need multiple operations for some other condition, perhaps you need to think through all of the risks.

Much of the blurb given out by doctors seems to be making the unconscious assumption that you'll never have anything else wrong with you that's not to do with you heart!

 

[Ross]

Your bound to hate Coumadin aren't you? That's fine, but consider the fact of those that didn't present with GERD, all to find out later in life that they do now and they are still on Coumadin. It's just another one of those things you deal with. You can't plan for everything. Somethings just plain happen and you accept them as they come.

With my lung disease, I can develop a bleeding episode at any time. We were all aware of this when the choice was made. If it happens, it happens, but if I can get away with never having surgery again, that's the way I want it. Put it another way, I won't make it through another surgery, so it doesn't really matter.

Sorry I'm coming off as a prick above. I dont' mean to be. It's just that I feel your worrying far more then necessary about side effects that are slowly dissipating as more and more really learn what it's about and how to dose it. I you have people mismanaging care, noncompliance on a patients part, etc, this is where the trouble is. I'd love to see all these people on the same page before I pass away, but I don't think it's going to happen. I'll be happy to teach everyone I can until then though.

 

[Andyrdj]

Clarification

Clarification

Ross, despite previous misgivings I made have had about ACT, the last thing I wanted was to be in a situation where it becomes difficult and my choice is made for me. It makes the possiblity of Atrial Fibrillation all the more worrying for one thing.

I'm truly sorry to hear about your lung disease, it's a detail that has escaped me from your previous posts. I was more expecting to hear about your experience with Ulcers, given you mentioned something about that a bit back?

Of course we can't predict everything that will come our way. But we should have a fair go at seeing what's wrong with us to start with before making the choice.

It totally sucks if you're left with no choice anyway after all that, I must admit, just adds another thing to worry about.

In my case, though, I'm glad at least that I found out before the operation. Also, folks, it's a good incentive to look after the rest of yourself, especially anywhere that might bleed.

And to ask yourself if there are any skeletons in our medical closet from an indulgent past. If nothing else, get them operated on before AVR!

 

[geebee]

Andy,

I am happy that you found out about a condition before surgery that might affect coumadin usage. It solidifies your desire for a tissue valve and I hope it makes you feel like the decision is over although I thought you had already decided on a tissue valve before now.

I have had GERD for years and have had not problems so perhaps it is the ulcer issue that is the concern and not the GERD?

As Ross mentioned, you cannot cover every scenario that might come up down the road. I am sure, with all your vast research, you must know that also. One could also argue that you could develop (after your valver replacement with a tissue valve), say, an allergy to all general anesthesia that would prevent future surgery. Sure would make a tissue valve seem like a poor choice then.

There are always situations that are impossible to predict. That is what makes life so interesting and so very precious.

Just some additional food for thought.

 

[Ross]

I think way too much time is being spent on reasons to stay away from Coumadin rather then living with it and any unforeseen event that come down the road. For millions of people, the drug is saving lives. Sure there are times that the unexpected happen, but this is true of any drug, not just Couamdin.

 

[dick0236]

I think way too much time is being spent on reasons to stay away from Coumadin rather then living with it and any unforeseen event that come down the road. For millions of people, the drug is saving lives. Sure there are times that the unexpected happen, but this is true of any drug, not just Couamdin.

Amen Ross. I found this "forum" about a month ago. I have read a lot of discusssion about coumadin/warfarin dangers. I have been on the drug for 40 years and have had no problem with the drug, except for once a long time ago, and that was my fault, not the drug. In my opinion, letting the drug play too big a role in decision making, is letting the "tale wag the dog". I learned a long time ago not to play the "what if" game.

 

[Blanche]

Albert has had GERD for about three years and has taken Protonics and Nexium. He recently had a colonoscopy and an endoscopy. Both showed no problems. He has been taking Coumadin since 1990.
Blanche

 

[StretchL]

In my opinion, letting the drug play too big a role in decision making, is letting the "tale wag the dog". I learned a long time ago not to play the "what if" game.

Of course, there are some very good surgeons out there who would strongly disagree with this opinion.

(Just to keep this thread "fair and balanced"...)

 

[Ross]

Andy let me through some more food for thought out. Once your procedure is done, you will forever be a heart patient. As such, you'll be given all sorts of stomach eating things to take such as asprin, potassium, diuretics, antibiotics, and list goes on. Perhaps not at first, but along down the road they'll slowly be introduced. There is no way to avoid it. Best you can do is get treatment for the GERD and follow your gastro's advice.

I must say that it is good to see you looking at everything. Just don't look so hard that you spook yourself out. There is plenty of data to be found on the net to support whatever position it is that you want, but for every reaction, there is an opposite reaction and then things can get really confusing.

 

[Arlyss]

A Very Individualized Approach is Needed

A Very Individualized Approach is Needed

The options for heart valves continue to evolve, giving more choices, but those options need to be thoughtfully applied to each individual.

Certainly the physicians involved should do this. Individuals can research their options and seek out the physician that will partner with them in sifting throught the options and what it means to their personal situation. I would not be comfortable with a physician who did not review all the options with me, and talk about the pros/cons without bias, taking into account my unique needs.

It is not a one-size-fits all situation. Some individuals will not survive another surgery. Some will do better with additional surgeries than if they are exposed to complications from medication. It may not always be possible to know, but it is certainly possible to lay out what is known and weigh it in light of an individual's situation.

Stephen Westaby, a cardiac surgeon in the UK, has written a history of cardiac surgery. In the valve section, he mentions that the debate of mechanical versus tissue continues. He mentions that " There is increasing evidence that event-free survival is better with a tissue prosthesis despite the need for re-operation. With improved cardiopulmonary bypass and myocardial protection, elective reoperation carries a low risk of mortality."

This is a general statement, it will not be true for everyone. Some people cannot survive another operation.

For my husband, I have found that he has withstood 3 surgeries well - 2 of which he was not supposed to ever need! - but he has suffered greatly from the stroke associated with his mechanical valve. So for him, in hind sight, he could have had these multiple surgeries replacing a tissue valve, and most likely avoided a major "event", his stroke.

During the time my husband was struggling through the first weeks after his stroke, Ariel Sharon suffered a small embolic stroke due to a hole in his heart. He was given a medication to prevent further clotting until the hole in his heart could be closed. Unfortunately, he suffered a massive bleeding stroke in his brain. He remains in a coma to this day. http://en.wikipedia.org/wiki/Ariel_Sharon To me it is an example of just how difficult some of the decisions that must be made continue to be.

Best wishes,
Arlyss

 

[Lynlw]

I just want to say not all heart (or valve) patients take meds or even aspirin daily. Justin has had 4 OHS and a few other cardiciac procedures over the past 19 years. The only time he was on heart meds or any meds daily was from the time he was dxd at 1 day until he was about 2 after his 2nd heart surgery to reroute his blood. granted he didn't have a valve replacement until 2 years ago (didn't have a pulm valve until then either), but he has had gortex and dacron patches, other patches and conduit made of bits of his own heart & pericardial tissue, a pacemaker, stents ect. for a few months post op and when his stents were placed, he took a baby aspirin and he takes antibiotics the day he goes to the dentist. But in between hospital stays he doesn't take anything daily except a vitamen when he thinks of it. Yes he is young and with his CHD things will probably change as he gets older, but no meds for 18 years is pretty good. And Justin is not one of the very few, I know of many many kids that had one or more heart surgeries that aren't on any meds

 

[dick0236]

I certainly agree with a recent post that "one size does not fit all" when it comes to choosing any particular type of replacement heart valve. That is a decision that is between the patient and his/her Cardiologist and Surgeon after discussion of pros and cons. One BIG pro for the "mechanical" is that its design life is much longer than "tissue". One BIG pro for the "tissue" is that you probably won't have to take Warfarin for the remainder of your life.

I have two friends, both with "tissue" valves and are much overweight and they continue to have problems. Its probably not their valves, it is there lifestyle that has much to do with their current conditions. I have another friend in his 70's who had a tissue Aortic valve implanted in early Feb., 2007.
He told me yesterday that it should last 15 years and that will probably be long enough.

I was 31 when my Aortic valve was replaced with a mechanica (Starr-Edwards) valve. Back then there probably were few, if any, valve choices and in hindsight IT was a very good choice. If "the good Lord's willing, and the creek don't rise" I may make it to the design life of the valve (50 years), only ten years to go.

I have to "jump in" on the Warfarin War that seems to be "raging" on some of thes threads and posts. My personal feeling is that the "tail (warfarin) is being allowed to wag the dog(OHS)" in a lot of posts. I also have had a stroke and it cost me 50% of my vision permanently and it almost certainly was due to a clot from the valve. It was 99% my fault. I went fishing for several days without my Coumadin. In hindsite I should have taken the time to go to a local pharnacy and "bummed" a half dozen tablets. Stupid, Stupid, Stupid.......oh well! Since that time I have carefully followed dosing directions and INR testing. It has been 33 years with no further "incidents".

These are my personal thoughts only and are based on my experience. I don't want to add misinformation to a serious choice. Some drive a Mercedes....I drive a VW beetle. They both get us to where we want to go.

 

[Karlynn]

This is a good discussion - based on the fact that one size does not fit all. If there was a perfect answer, there would be no need for a valve selection forum. No one is going to find the perfect answer for themselves either. It will most likely only be the best answer for them (and in a small number of cases not). There will always be things that arise that will make each of us stop and pause from time to time.

If there's one thing I know for certain - anytime I expect something to go perfectly and I'm 100% positive it will, the Told-You-So demons step in to have their little laugh.

My mechanical valve, 15 years of hind sight being 20/20, was the best choice for me and I'm very happy with it. Was it the perfect choice - no. The perfect choice would have been one that allowed me a surgery-free, drug-free life taking me to a ripe old age. And that choice just isn't out there, for anyone.

 

[Superbob]

Well said, Karlynn. There is no perfect choice, as much as we all yearn for it. There is only the best choice for us individually, after weighing all the positives and negatives of the range of choices.

 

[Andyrdj]

thanks so far folks...

thanks so far folks...

I was actually hoping here to spark off a more general discussion about related conditions - hence the statement in bold letters inviting folk to write in and add any conditions wherevy the valve choice works the other way.

I have found that many heart surgeons are not greatly informed about areas of medicine beyond their specialisation.

I've also found that stomach discomfort can feel very much like cardiac pain, so that might be a weight off people's mind, or an extra worry, depending on what it is.

 

[hensylee]

yOU mentioned GERD and possible ulcers. GERD can FEEL like a heart attack. When I had a heart attack, I went to emergency room and was misdiagnosed as having GERD. Upon catherization a couple months later, I was told by a cardio that I had a heart attack. I have a cousin who was hospitalized possible heart attack three times and it turned out to be GERD.

I also take a cimetidine occasionally for stomach discomfort (ulcer-like) and I went on the internet and found that it should not be taken within several hours of taking an antidepressant that I also take.

I think it is important when prescribed any new medicine that we check it thoroughly via the internet to find side effects and interactions with other medicines.

I don't know if this addresses anything you have in mind.

 

[Lynlw]

I was actually hoping here to spark off a more general discussion about related conditions - hence the statement in bold letters inviting folk to write in and add any conditions wherevy the valve choice works the other way.

I have found that many heart surgeons are not greatly informed about areas of medicine beyond their specialisation.

I've also found that stomach discomfort can feel very much like cardiac pain, so that might be a weight off people's mind, or an extra worry, depending on what it is.

I don't need a valve, but since my grandmom, Mom (Cabg and AAA), and son have different heart types of issues, i thought about what I would do, one of the big concerns to me would be my back problems, it can be pretty tricky (but not impossible)to have spinal blocks and back interventions i've had on coum.

 

[OldManEmu]

Lyn you make a very good point.

I just want to say not all heart (or valve) patients take meds

All VR patients will take something (Aspirin or Warfarin), however if you were in good health and on no medications before surgery it doesn't always follow that you will be on a cupboard full of medications long term after surgery.

 

[dick0236]

Lyn you make a very good point.

All VR patients will take something (Aspirin or Warfarin), however if you were in good health and on no medications before surgery it doesn't always follow that you will be on a cupboard full of medications long term after surgery.

I don't think that OHS automatically means a "boat load" of Rx. The ONLY Rx I took before the age of 64 was Warfarin. I have added "blood pressure" and "colasterol" Rx but that is more attributal to age and genetics than a byproduct of OHS.

 

[Lynlw]

Lyn you make a very good point.

All VR patients will take something (Aspirin or Warfarin), however if you were in good health and on no medications before surgery it doesn't always follow that you will be on a cupboard full of medications long term after surgery.

Justin does not take aspirin, he had his valve (bovine) at one of the leading childrens' heart hospitals, BUT I even questioned that so called his docs at 2 other centers to get their opinions, One told me they don't put their patients on them BUT IF it would make ME feel better I can give him baby aspirin,oh and when he went to the adult CHd specualist i was wonderring if he would suggest it, but he didn't