I boast mixed aortic valve disease, from birth. Some point at the end of this month I’m going to have my aortic valve replaced, almost certainly with a mechanical one*. This will mean taking warfarin (coumadin) for life.
I’m not too bothered (the alternative is certain death in 3-5 years :smack: ); warfarin seems pretty liveable. But does anyone on here have experience they’d like to share about it, or open heart surgery in general?
Hope this’ll be the first of many postings!
Cymro
*about the valve choice: I’m 24, and it seems awfully early to be having bits of me replaced with metal. The alternative is a tissue valve, which would need replacement in 10 years or so. But I could lead a completely normal life for those 10 years - including my customary heavy drinking and snowboarding. What do you think - am I making the right choice?
Welcome to poster status and all the best wishes on your surgery.
As for the valve choice issue, I have no personal experience with valve replacements, so take my opinion with a grain of salt. Based on my experience with other kinds of surgery, I think if I were you I’d want to get the mechanical valve based on the expectation that hopefully this will be the only surgery you will need for it. Recovery from surgery, even if it’s a minor thing, is never fun, and I think the stress of going through multiple surgeries would add up to be worse than the inconveniences that warfarin therapy involves (especially since surgery is harder to bounce back from as you get older). A friend of mine is on lifelong warfarin for a genetic clotting disorder. At first they had some trouble working out the dose, but he seems to be doing pretty well with it now.
Hope all goes well for you.
My mother had her aortic valve replaced with a mechanical one. She was very petite, and the porcine valves were all too big. Even though she was in here 80s at the time, she came through the surgery with flying colors.
Of course she was on warfarin for the rest of her life (she died last year, of causes that weren’t directly heart-related). She had to have her blood checked every couple of months, and the warfarin dosage adjusted. Also, she bruised and bled very easily. Other than that, there wasn’t any kind of problem.
I wanted to welcome you to the boards and to wish you luck.
I don’t have any personal experience with open heart surgery, but my friend and ex-boss did have it two years ago and I was stunned at how quickly he recovered. He was out in days and back to work in weeks. Of course, he is in great shape (is an exercise freak.)
Anyway, I guess what I’m saying is, they are so good at this now that I expect you to do well.
I had a St. Jude’s (mechanical) valve put in back in 1984. At the time, my doctors didn’t put me on warfarin (just Persantine and aspirin), and I eventually threw clots, with unpleasant results. In 1989, they put me on warfarin, and I have had no problems with the anticoagulants or the valve since. I do need to check the dosage every few weeks, but these days there’s a machine that lets me check it myself at home with just a finger stick.
In 1993, I developed an aortic aneurism. This had nothing to do with the valve, was not caused by the valve or worsened by the presence of the valve; it was the result of the same disorder that required my valve to be replaced in the first place. However, since they were replacing the aorta right where it joined the heart (and the mechanical valve), they opted to replace the valve so they could get a better seal between my new aorta and my heart. At that time, we discussed porcine valves, as well as valves from cadavers, for the same reasons you mention. For me, it was a clear cut decision, with no question in my mind. Warfarin is a very manageable drug, with very few, well documented side effects. While on warfarin, I spent a few years in Summit County, got in more than 100 days on the slopes for a couple of years, did a fair amount of mountain and road biking, and even dealt with my share of road rash with no problems. I got lazy for a couple of years with my new job, but I’m getting back in shape and rode a couple of centuries last season. I’ve really never noticed the sort of bruising or bleeding issues people talk about. Sure, from time to time, I find a bruise I don’t remember getting, but who doesn’t? If you’re cut, you bleed. Unless you get way out of balance with your dosage (which either takes determination or months of neglect), you’re not going to spontaneously start bleeding.
I have no reason to anticipate any further issues with my valve, or the warfarin. Had I opted for a porcine valve, I would be on my third or fourth valve by now, and every surgery gets harder. Scar tissue builds up, and if you’re lucky, you’re older to boot. On top of that, it just felt to me like a porcine valve was a slow burning fuse. I can’t help but think that every day, I would wake up knowing I was one day closer to the next time of the knives. I just couldn’t decide to put a disposable replacement in my heart.
I asked a friend who’s fairly knowledgeable about such things and this website was recommended for informational purposes: www.lifeisnow.com
IIRC, Typo Knig’s boss was considering valve replacement surgery a few years back (they wound up being able to repair the valve rather than replace) but one thing she commented on was that with one type (mechanical vs. porcine), childbearing would be contraindicated. I think that was the porcine one. As she was 50+ at the time, it was not a major concern for her
I wonder if they have this for coumadin? My brother’s on it following his heart attack and they messed up the dosage while he was still in the hospital :smack: It would be cool if he didn’t always have to go in to have the levels checked.
That’s consistent with my experience. For what it’s worth, I only heard the valve for the first few days before my brain cancelled it out. So, really, the mechanical has a clicking that is annoying to other people.
As for the “easy bleeding,” that all depends on where your levels are. I try to keep my INR between 2.8 and 3.2 (I believe “normal,” inasmuch as such a thing exists, is 1.0). I really have not noticed much of an issue with bleeding. I don’t get any more nose bleeds than anyone else around me, although I do notice things like shallow bruises after a flu shot that don’t hurt but stand out against my skin.
Coumadin is the brand name for warfarin. It’s the same machine, and I have one. Had, really, because it broke this month and I’m waiting for the insurance company to replace it. They aren’t recommended for people just starting on warfarin, because it’s a slow enough acting drug that it’s really easy to overcorrect the dosage and get way out of range (even for professionals, as your brother learned). I have one because my doctor trusts me to monitor my own dose, just like my father monitors his insulin levels. My aunt has one because her doctor trusts her to check her blood, phone in the results, and wait for instructions before changing the dosage.
A friend who is knowledgeable about valves looked at this thread and had some comments (usual disclaimers: neither the friend nor I are doctors, you wouldn’t be our patient in any case, and advice from a message board is for informational purposes only, none of us knows the details and nuances of your situation), and anyway you have certainly done your homework. This friend’s bias is toward the newer tissue valves.
My friend’s comments boiled down to:
[ul]
[li]Concerns over alcohol enjoyment and snowboarding posing some risks with coumadin[/li][li]Agreement that tissue valves would require re-operation (though they are easier to manage in the interim, e.g. no medication/food issues), and re-operations are not a huge deal if otherwise healthy[/li][li]Improvements in the technology of tissue valves (e.g. bovine pericardium vs. porcine), and they can last 15+ years now[/li][li]Improved surgical techniques (e.g. through femoral arteries) may be coming, for tissue valve replacement[/li][li]Encouragement to consult with doctors who do a lot of these at some of the top hospitals e.g. Cleveland Clinic, Cedars Sinai, Brigham/Women’s. These guys do far fewer mechanical valves than they used to. “I can assure you that if I needed this done, I would NOT be seeing my local community guy who does 10 or 20 of these a year - rather, I’d be looking for the guy who does one or two a day.”[/li][li]Ask the doctor “Doctor, if you were me, what kind of valve would you have implanted in your chest (and why)?”[/li][/ul]
Thanks for the tips - i have an appointment with a surgeon in about 3 weeks, I’ll be sure to ask those questions.
The system here in the UK is a bit different - i don’t really get to choose which hospital I’m treated at, cases tend to get passed up the chain of command to regional then national centres depending on difficulty etc. I’m fortunate that I’m under the JR in Oxford, a very big tertiary centre.
So thanks for the advice, it’s really clarified my own thoughts on the matter - not much more I can do until I see the prof!
