Confused, scared, bewildered and overall dumbfounded! Never knew I had a problem

[Luckyguy17]

Jake,

Some levity is good, retains sanity.
Am recent recipient of a bio aortic valve (56), but am on Coumadin for 90 days and can confirm that it really is no big deal.
Concerning Palvix/Coumadin, there are many of members on the forum, with tremendous experience and they will likely confirm that Coumadin is time proven, therefore likely best choice, if anti-coagultatio a requirement.
Repair vs. Replace, your surgeon likely knows best and you may want to still discuss a valve choice, in case at OHS repair becomes a poorer choice, so that there is a Plan B.
Gil

 

[ARGreenMN]

No need to apologize for your levity. A lot of us use that to cope with this situation. I hear ya about needing to drop several tens of lbs. PS - that does NOT get easier as you get older, lol. I'm also a mechanical engineer by trade so also appreciate the awesome engineering going into today's medical devices. And have a whole NEW respect now that I've got one installed! Hope they calculated everything right on that sucker!

Here's some info on Coumadin (aka Warfarin) and Plavix. We always have to be careful to put disclaimers on things when we talk about this kind of stuff, so DISCLAIMER, DISCLAIMER - I am NOT a medical professional in any way, shape or form. Your mileage may vary. Void where prohibited by law. Relatives of employees are ineligible. This is based solely on what I've read and heard from my doctors. So, with that... The official recommendation with all mechanical valves (as I understand it) is to use Coumadin. There is one active study (with the On-X valve), which one "leg" of it is trying to determine whether Plavix might be a suitable substitute. But that is years away from being complete (I believe 3-5 years). So there is some hope that someday Plavix might be ok, but for the time being, unless you want to join that study and be a guinea pig, lol, you'd most likely be on Coumadin if you go with a mechanical valve.

But as a lot of us will tell you (and I'm still a rookie, there are a lot of veterans on here that have been on Coumadin for decades) Coumadin isn't much of a big deal at all. Like you, I thought I'd be terrible about taking pills regularly, cause I have always sucked at things like that. But so far, in almost 7 weeks, I only screwed up one dose (this past Fri. night, I took a 2mg instead of a 5 mg pill) and haven't missed any doses yet. I've got a pill box, and have set an alarm on my cell phone to remind me when it's time. Working well so far.

 

[jake]

I have a question for you Andy (along with a lot of other babell)

I have a question for you Andy (along with a lot of other babell)

Andy:

Did you have to go to the clinic often at the beginning when you got your heart valve? How long did it take before you stabilized your meds to the point where you didn’t have to have your coagulation numbers checked more than per month? How often do you check it now if any? Do you go to the hospital for this or do you do it at home if you do it regularly?

I already have had to take Plavix, metropolol, and all my supplements I take every day (sometimes a couple times a day) so I am pretty used to popping pills on a regular basis.

Amen to that whole plan B thing for sure! My wife and I have been going over this at nausium and we are pretty blessed to have some pretty good input from doctors we know who have clients who are on anti coagulant therapy.

How long is the average recovery time where a person can go drive around in a car or do normal stuff around the house generally speaking? Im not in great shape but despite being a few lbs overweight, I rollerblade 20 - 25 miles a day and am a vegan (one year and counting). Ive tried to get myself in shape for this impending event.

Right now, with as much as I have learned on the Forum, I have been looking at mechanical heart valves and have a lot of research to do! Being a "biggin" as I am, we have pretty much ruled out a tissue valve and my plan A is to keep my well functioning bi-cusped valve with a plan B of a mechanical valve. If I had to make a call right now, the On-X looks pretty good but Im looking at the St. Judes, unit tomorrow. I know different hospitals use different valves. Its not like picking a set of cylinder heads or a camshaft, but more investigation cant be a bad thing!

The other thing I have to do is to decide which surgeon I want to go with and at what hospital system. I am pretty comfortable at Henry Ford with Dr Nemeh but today I called the Cleveland Clinic to get some info on sending my films and reports over. I am going to do some research on the best person at the Cleveland Clinic to do my aortic replacement and possibly an aortic valve as well. I am always wide open to suggestions from those of you who have the "inside scoop." Ya know a good plumber is tough to find!

I would sure love to be able to stay close to home and we have a few very good hospitals with great thoracic surgery centers, Beaumont, DMC, St.Johns, U of M, and Providence just to name a few. It’s just tough when ya don’t know the insiders deal. But I have a little time to investigate and now, plenty of support from you all. I am very thankful for that.

 

[Kathy McCain]

Hi Jake,

I know it's a REAL SHOCKER!! Once recovered you will feel much better! My surgery was done Feb 2008. I was 56 at the time and chose a tissue valve. Still doing just fine.

Good luck to you and please keep us posted.

 

[Luana]

So just how much effort do you folks who have mechanical valves put into monitoring INR? I’m not a diabetic so regular blood testing is a prospect that is new to me. When I brought it up to my surgeon, he keeps insisting that my best bet is to get the new aortic root and arch and leave the well functioning bi-cusped heart valve in place as its working fine to avoid having to take anti-coagulant drugs. He seems to think the original valve, bi-cusped as it is, would likely outlast a pig or cow valve and that there is a good chance that with proper control of BP and some other factors, may last a lifetime. Of course, "other factors" was his way of telling me to lose about 70 lbs! LOL!!!!!!

For the INR monitoring, here's the deal: once a month I go to a lab about 2 miles from where I live and get blood drawn. Total time invested is about 10 minutes. The next day I get a call from my cardiologist's office telling me what the result is. The only difficulty I've had with warfarin was when I first started taking it and was taking another drug that caused my levels to be too high. For the last several months, it's been right in the middle of the targeted range. I rarely drink, but in case you haven't read it before, I've never met a vegetable that I didn't like and freely eat vegetables and salads.

As far as replacing the valve, the surgeon is saying if it's not broken, I don't fix it, which is usually a wise approach. Maybe I've missed this, but what was the test that makes the surgeon determine your valve is well-functioning? If it's an ehco, I wouldn't be too sure, if it was a cardiac cath, I'd say leave it be.

 

[jake]

Luana:

It was one of each, actually, one echo, two catheterizations. The first time they went in to put the stent in, they saw the aortic aneurism and bi-cusped valve, and backed right back out. They sent me down for a CT on the premise that they may be cutting me for an aorta/valve replacement so why put a stent in. After looking at all the images, they decided to leave the valve and aorta alone, put a drug coated stent in and send me out to heel up for a year checking the aorta every six months.

Striving to be a top shelf mechanic as I am, I am right with ya on the whole if it aint broke thing. We have discussed this at length, and everyone on my team thinks I have a lot of years left in the valve I have. Many of these folks speak of constant improvements in technology and procedures and seem to like to keep original equipment in place for as long as possible.

Thanks a bunch for the reply and info. I’m quickly moving from confused, scared, bewildered and overall dumbfounded to simply scared, dumbfounded and educated. I hope to return back to my original state of being dumbfounded alone within the next couple days or maybe a week at the most! LOL!!

 

[Luana]

Well, if it were me, and the surgeon was basing the decision not to replace the valve from the cath, and I would go with that.

 

[ALCapshaw2]

Jake -

FYI, one of the Top and most prolific Aortic Valve Surgeons at Cleveland Clinic is Dr. Pettersson.
It just happens that he is also the most prolific user of the On-X Mechanical Valves at CC.
The Bovine Pericardial Tissue Valve seems to be the preferred Tissue Valve at CC.

You may want to start a New Thread asking for members who have had surgery at Beaumont, or do a Search for keyword "Beaumont" and select "any date" from the drop down menu in the lower left corner of the search window.

'AL Capshaw'