Anecdotal Observances

[dbbrooks]

While amusing myself in lieu of thumb twiddling while edging my way toward the waiting room door, I always make it a point to query medical professionals about what they would do as to AVR valve selection in my situation (55 yrs old, with no other compelling medical factors). Tissue valves (and when pressed bovine paracardial) seems to be winning out, especially with surgeons about my age. Even the one that has just recommended a St Jude mechanical for me, hmmmmm.

I've tried to rationalize these observances. Here goes:

Re Coumadin: Their hectic lifestyle and habitual self-actualization mode of thinking generally doesn't mix with coumadin, even though their access to testing facilities and dosage regulation expertise would be great. Rat poison is more than a colorful turn of a phrase to them. They've personally weighed the bleed and thrombosis down-sides with the benefit of their medical knowlege, clinical experience, and statistical savvy and don't like the results. They can read between the lines and not become overly giddy with the prospects of a replacement therapy for coumadin changing their calculus.

Re Reoperations: Based on their training, clinical experience and access to expert heresay testimony, they have the ability to more properly evaluate the looming shadow of the reoperation boogieman, and its impact on their life 15-20 yrs from now.

What have you guys and gals observed in the way of clinical biases that may be baked into the collective valve recommendation cake?

PS Just recollected the look I got from my cardiologist when right up at the top he asked me(?) if I knew any reason I couldn't take coumadin. I said that I had heard about it, and didn't look forward to the dietary discipline it would entail, but perhaps I could take it on a trial basis and see how my INR behaved at what behavorial cost. That look .... like "are you crazy and have a death wish", or "why don't you just ask me to burn my medical license now".

 

[Nancy]

What the docs have said is interesting. However, these are all fairly healthy people, I would guess, and most probably have not had the golden opportunity to "experience" heart surgery in an up close and personal way. They have not personally experienced the steady decline in health that accompanies heading toward heart surgery, nor have they experienced the further decline in health as would happen when they have to face additional heart surgery, nor have they experienced the long road to recovery that follows. They are, after all just observers, highly educated ones, but observers nonetheless. I think if they had experienced how it actually "feels" to have heart surgery and how it "feels" to have another one when the first one bites the dust, you might have gotten different opinions.

I am not advocating one valve over another, each individual has to make their own determination. I am merely mentioning that the "sample" is not good in a scientific way.

This from an observer, myself, an up close and personal one, but an observer nonetheless. Watching my husband struggle through each of his 5 thoracic surgery recoveries (3 heart and 2 lung), I would wish with all my heart that he never has to go through it again.

 

[Kenny F]

My observations are similar - everyone in the health field when queried leans towards a tissue valve for their personal use.

Interestingly, when docs and nurses find out I am not on Coumadin, they suddenly switch to calling it rat poison! I have found this consistent behavior....

I am not at all opposed to mech over tissue - whatever it takes to heal the problem.

 

[dwfreck]

I've queried a lot of different health professionals: in the last two months I've seen my dentist, my family doctor, my kids' family doctor(s), my gastroenterologist, my cardiologist, two thoracic surgeons, and all of their attending nurses, hygenists and assistants. I've also talked to my uncle who used to be a cardiologist. Every single health professional EXCEPT my cardiologist and my uncle react with horror to the prospect of a lifetime on Coumadin, even as compared to the prospect of a second or third open-heart surgery. My cardiologist and my uncle are of the opinion that there really isn't a good choice, but that a lifetime on Coumadin can be managed, if you're carefull and cooperative, and is less objectionable than a second open-heart surgery.

It's quite interesting to me to observe these reactions. It's my guess that everyone except the cardiologists react to the problems created by Coumadin, but aren't aware of the problems related to progressive heart failure and surgical recovery. Since the cardiologists are the only ones who have to deal long-term with the effects of heart failure and recovery from surgery, they have a different perspective on the multiple-surgery proposition.

Mind you, I'm going to see my cardiologist again this coming Thursday, to get a more detailed opinion from him about the relative merits of tissue vs. mechanical, because I haven't had the chance to talk to him since I learned more about Coumadin and it's potential effects on my lifestyle.

 

[Ross]

I still laugh. They all give Coumadin such a bad rap, but in reality, it isn't nearly as awful as they make it sound. So many of these highly educated observers haven't gotten highly educated in Coumadin therapy. Until they do, I'm not real interested in there take on the situations especially when they have no clue what it's like for us.

 

[ALCapshaw2]

TISSUE vs. MECHANICAL VALVE

TISSUE vs. MECHANICAL VALVE

Having survived TWO Heart Surgeries (Bypass and AVR), I am still of the opinion that a Tissue Valve is a reasonable option for someone who wishes to 'live life to the fullest' for whatever reason for their FIRST Heart Surgery, with the understanding that a second opertion WILL be necessary later in life. I AM surprised by the number of people who opt for a PIG Valve when the Bovine Pericardial Valve has a proven 90% durability record after 15 years and some early recipients are approaching 20 years.

My first choice was for a Bovine Pericardial Valve which my PCP also recommended and my surgeon agreed to. For reasons that I still don't fully know, the surgeon switched to a Mechanical Valve after 'opening me up' so I am on Coumadin for the rest of my life. I've not had any major problems in the 2 years I've been on Coumadin, but it does 'complicate' seeking further 'invasive procedures' such as a Colonoscopy which I have 'put off'.

My second recovery was 'different' than my first. Better is ome respects than my first and Worse in other respects. I suspect a THIRD Surgery is where things could become more 'dicey' and perhaps that is why my surgeon went with the Mechanical Valve.
It is my understanding that 'opening the chest' a third time is MUCH more complicated than ther first and second times.

'AL Capshaw'

 

[fisher6476]

This is an interesting debate! In my case as I was being tested and we were begining to realize that valve replacement surgery was on the horizon virtually all of the medical proffesionals I dealt with ASSUMED that a mechanical valve was to be implanted. They all said "well you will get a new valve and be on blood thinner for the rest of your life. Not knowing anything yet at that point I too thought that was the only way to go. Then I started to learn a lot (and much of my education came from this site ) and I began to realize the was another choice. Then I met with my surgeon who was the only medical proffessional who seemed to ASSUME that a tissue valve was the only way to go. After much soul searching I decided on the pericardial bovine valve. I think what will be constant for all of us here is that we make the decision that we decide is best for us. It is a life saving decision in and of itself so that it is ALREADY the right choice. Then only when each of us knows what the future holds will we be able to analyze and judge the decisions that we made.
Steve

 

[Kenny F]

Another observance - at rehab, all the patients are by-passers, most a lot older than me. It is not unusual for them to have 3 or 4 OHS!!!! I talked to one this morning who went from cath to surgery w/o time to think about it - and was glad!

Valvers have a lot of time to gather intel and make choices. To me, that is a good thing, but to many it isn't. i wonder how many valvers never had any input?

Dale - my cardio switched from "Coumadin" to "rat poison" as soon as he was sure I didn't need it for my A-fib!

 

[joey]

One can talk till one is blue in the face about coumadin . This medication does affect everyone differently. If one is fit and healthy one will somehow be able to live with it. The only problem I have experienced over the last three months with coumadin is a constant bleeding nose. Other than that I'm ok. I have fallen ,bumped myself on a few occasions without any bruising. It can be a bloody nuisance when one needs an operation. I wonder how many people really suffer from blood clotting or stroke because of a fluctuating PT- INR. Many people check their level of the PT-INR once a month In a matter of days after checking the PT-INR the level can drop dangerously low without one even realising it for three weeks until their next check up. I think people are nervous and worry unecessary always thinking of the concequences if the level should drop too low. I have a biological valve soooooo within the next few week NO MORE COUMADIN.

JOey

 

[dwfreck]

Ross,

I know you and Al Capshaw and Nancy are very confident that Coumadin is "no big deal," but you, and most everyone currently taking Coumadin, no longer have a choice about it. I have to wonder if the fact that you HAVE to live with it causes you to favorably adjust your opinion of the difficulty of living with it. Considering the other diffuculties you and Nancy (and Joe) live with, I'm sure that Coumadin is pretty small in comparison, especially once you've got your dosage and INR level well in hand.

However, when I read through the Coumadin forum on this website, and through all of the information on www.warfarin.com, I come away with the impression that it is a lot of work to manage Coumadin. It sounds like a constant battle 1) to educate your health care providers about the effects of Coumadin, 2) to monitor and maintain your Coumadin dose and INR level in the face of variations in your health and diet, and 3) to keep up with the numerous unexpected changes in ongoing Coumadin therapy (whether physiological, procedural or educational). It sounds to me like managing Coumadin therapy is as much work as managing your own finances, and that you have to do much of the work yourself, because there aren't as many well-qualified "experts" or "assistants" working in Coumadin therapy as there are in personal finance. And that's just a my consideration of the health effects of Coumadin. What about the financial effects of Coumadin? What's the cost of a lifetime of Coumadin therapy?

Everyone's health is different, and usually includes a list of medical concerns beyone their heart. For my part, I'm concerned about colon cancer (I've just had a second polyp removed in the last five years, and I'm only 39!), prostate cancer (my dad has it), and a host of other nebulous "family" medical problems. It's a well-documented fact on this web site that many health professionals just don't know much about Coumadin, and that that fact complicates the lives of patients taking it when they have to deal with those medical professionals. It's also a well-documented fact that having a mechanical valve increases the risk of clot-related health problems, even when Coumadin therapy is carefully and correctly managed. So, a mechanical valve and Coumadin therapy adds clot-related problems to a person's list of medical concerns.

Also, everyone's lifestyle is different. Yes, Coumadin is manageable, but it is also life- and lifestlye-changing. Depending on the severity of their heart problems, a person may or may not be able to return to the lifestyle they were used to living before the onset of their surgery-causing symptoms. Even if they can't return to their previous lifestyle, they may have goals for their after-surgery life and lifestyle that can't be reached if they're taking Coumadin, or that may be threatened by the increased risk of clots that comes with a mechanical valve.

On the other hand, open-heart surgery is hard. It's hard on your body, mind and spirit. Recovery is difficult and lasts for a year or more. There is a risk of death, just from the surgery and it's immediate complications, as we here know all too well. Having a second surgery later in life increases the risks AND the recovery time. And what about the costs of open-heart surgery, or, for that matter, multiple surgeries?

It sems to me that the crux of the problem is that in choosing a replacement valve, we must weigh a group of vastly different and varying risks against our vastly different and varying expectations and goals. And, for the most part, no one quotes the risks in absolute terms (for example, less than 1 out of 100 people under the age of 60 without other medical complications dies during open heart surgery (that's what I've actuall been told)), but rather in relative terms (for example, you're twice as likely to die during a second open heart surgery as you are during the first (I'm making that up)). Would you DOUBLE your risk of death during surgery? Would you increase it from 1% to 2%? Would you increase it from .1% to .2% (assuming it started as low as .1%)? Furthermore, each person's tolerance of risk changes over time. Is 2% risk of death acceptable when you've got two young children to raise? Is it acceptable once your children are self-sufficient? What about after they've married? What about after they've given you grandchildren to spoil? We all face multiple, and often repeated, risks every day of our lives. What is the risk that you'll die during heart surgery? What is the risk that you'll die in an automobile accident? Which one do you participate in more often, and how does that affect the risk associated with it? Finally, there's the question of finances. How much will all of this medical care actually cost over the course of your lifetime? How do you plan to pay for all of this medical care over the course of your lifetime, and how will your ability to pay now and in the future affect your decisions and lifestyle?

For me, it all comes down to a couple of very difficult questions that everyone struggles to answer their whole lives: 1) How long do you want to live (do you really expect to live forever)? and 2) What do you want the quality of your life to be at any given time? Unfortunately, the answers to those questions involve mathematics that is extremely complicated (I'd rather solve differential equations any day), and we keep getting conflicting information about the values assigned to all of the variables!

Whew! Where did all of that come from? Thanks for staying with me...

 

[Nancy]

Hey Dale-

WOW. Heavy thinking there!The whole situation can become a very philosophical discussion, can't it?

Add all of what you said to the uncertainty of whether your health will improve or deteriorate or stay the same over a long period of time. Tough stuff, indeed. No doubt about it.

 

[Kenny F]

Bravo, Dale!

Well conceived and presented arguments, indeed. And as you yourself say and know, STILL impossible to make a black & white conclusion.

 

[Ross]

*Marks Dale as suspicious of suspicion. Will keep a close eye on him.*

Tis really not as bad as it's made out to sound. Really it isn't.

 

[fisher6476]

Let's see....where did I leave that crystal Ball???????

 

[Marge]

Dale -- wow ... these are all the things I've been hashing out in my mind about the valve choice ... and so well put. Thank you.

I am still not decided what to tell the surgeon I'd like if the repair he seems so confident about can't be done.

I'll say one thing about the coumadin that I'm not sure I've seen mentioned here. The perils of a second OHS surgery at an "advanced" age are often cited as a reason for a mechanical valve. But coumadin therapy as we age also presents some real problems.

I have some indirect experience of coumadin, from caring for my mom. My mom was on coumadin for years because of a history of pulmonary embolism. She did not live with me (her choice) but I was the one who took her to her doctor's appointments, blood draws at the lab, etc. When she first got on coumadin, it was fine; she could manage it pretty easily. As she aged, it got tougher and tougher. Her eating got very erratic. She'd forget to take her pills. Or not forget, but just not take them -- she'd have all kinds of excuses. "They upset my stomach, I feel fine, why do I need them?" Etc., etc. etc. All her life she hated taking pills, any kind of pills, whether prescription or OTC. This preserved her from the kind of over medication that older folks often have with multiple supplements, vitamins, OTC stuff, but it made it tough when she genuinely did need to take medication. (She had arthritis and would even resist taking Tylenol, so she was in pain a lot.)

Sometimes she'd lie to me, and insist she had taken her coumadin when I was sure she hadn't. (Once she told me, "Oh, I talked to the doctor and he said I didn't have to take those any more." I was on the phone immediately to the doc -- of course he had said nothing of the sort.) I'd go over to drive her to the doctor or the lab & find she'd have cancelled the appointments -- "I am just too tired to go."

It was a constant struggle, and I had no authority to compel her to do anything; she was not demented or incapacitated. Of course none of us think that we'll ever be like that; but the problem of "non-compliant patients" is one of the reasons why doctors give older people tissue valves.

 

[dwfreck]

*Marks Dale as suspicious of suspicion. Will keep a close eye on him.*

I'm definitely one to keep an eye on! For that matter, keep two eyes on me, I know a few slight-of-hand tricks!

Originally posted by Ross
Tis really not as bad as it's made out to sound. Really it isn't.

As for the Coumadin, I find the usual horrified reaction from the medical community kind of amusing because I know it isn't THAT bad!

On the other hand, I think you've said many times that you really didn't have much choice in picking a valve or enduring multiple surgeries, and you're already on the "other side" of the decision. Imagine what it would have been like if you had the opportunity to choose?

It's too bad we can't "test drive" these decisions . You know, try Coumadin for a few months to see how we react to it and how it affects our lives. Then maybe get yourself hypnotized for six weeks into thninking you've just had surgery and have to suffer through the recovery . I know those are twisted thoughts, but it would sure clear up a lot of quesitons!

 

[dwfreck]

Let's see....where did I leave that crystal Ball???????

I prefer a Magic 8-ball, the answers are much shorter.

 

[dwfreck]

Of course none of us think that we'll ever be like that; but the problem of "non-compliant patients" is one of the reasons why doctors give older people tissue valves.

"non-compliant" ? Me?

I assited my mother with the care of my grandmother during the early onset of "senile dementia" (we suspected Alzheimer's, but never got an autopsy, so don't know for certain), and my grandmother was definitely that way. If that kind of stubborn, strong-willed response is at all genetic, then my caregivers are in for a rough road. What am I saying? In my family, that kind of stubborn, stron-willed response is definitely genetic! My grandmother had it, my mother has it, my father has it, I have it, my wife has it and my kids have it. Wouldn't you know, that the "Never give in and never give up" determination and persistance that Nancy quotes to us and that many, many people put a high value on can come back to bite us in our later years? Ah, well, it's just one more variable in the giant multi-nomial equation we're all trying to solve!

 

[Nancy]

Non-compliance can get you into a boatload of trouble even if you don't take Coumadin. Being on Beta Blockers for a while and suddenly stopping them can be dangerous, as can prednisone, and thousands of other drugs. Taking drugs erratically can throw your system into a turmoil. Some drug regimens are so delicately balanced that adding or removing just one can cause several problems.

If you have heart problems, sooner or later there will be medications, and they aren't sissy medications.

There isn't anything easy about any of this. It's all complicated.

And--as you get older even without heart problems, you'll be on medications for something or other, unless you're extremely lucky.

Older people who won't let others help them with their medical issues, have a difficult road. It's hard enough for young people to keep track of.

 

[ALCapshaw2]

WOW Dale !

That was an EXCELLENT discussion of the mental / emotional maze one goes though in making a Valve Choice.

ROSS: How about 'tagging' that post with a reference in the Reference Forum and also the Valve Choice Forum.

Bottom Line as I see it:

EVERY Valve Choice has it's Positive Aspects and Negative Aspects so there is NO CLEAR CHOICE, only what 'feels best' to each individual and their life circumstances.

One more comment. I did NOT choose to have a mechanical valve and to be on Coumadin for life. That was the first thing the surgeon told me when I came to.

I have learned to live with Coumadin and for the most part it does not affect my daily life, other than to BE SURE I take my pills Every Day. After this expericnce, I urge everyone to have a 'backup plan' with at least a 'second choice' and perhaps a third, to be discussed with and agreed to by their surgeon.

As it turned out, the St. Jude Mechanical Valve would have been my second choice anyway. Yes, there are times I wish I had received my first choice (Bovine Pericardial Tissue Valve) but that just didn't work out. Life goes on.

'AL'