Valve Selection 1

[MelissaM]

Hi Bob,

You might want to do some research on the cutting edge surgical techniques that are being honed. There is a robotic operating system called The Da Vinci System that got approved by the FDA last November for fixing mitral valve stuff. They are working on approving it for other heart surgeries as well. Fifiteen years from now, heart surgery might look very different! It might weigh into your decision making process

Also, one thing you will read again and again on this forum is that people's pain levels post-surgery were surprising less than they expected. Recovery takes a while, but - in my opinion - it is more related to building stamina rather than dealing with pain.

Melissa

 

[Bob Bates]

Melissa-thanks for those words of encouragement. I am kind of a wuss when it come to pain and discomfort, which you would think would make me a candidate for the "one operation" mechanical valve. As you suggested however, I hope that medical advances will make future surgeries less risky with less discomfort. That is a factor in my almost sealed decision to go with a tissue valve.

Regards

Bob B.

 

[JAMES W]

VALVE SELECTION

VALVE SELECTION

Bob....

I had my AVR in January of this year. I am 50yo, having had Rheumatic Fever as a child. Because I'm in law enforcement, I chose a Medtronic porcine over the mechanical. Like you, I would rather endure a 2nd surgury down the road. I was asymptomatic before the surgury, so I think it made the recovery easier.
I had a gall bladder removed in July that was far more painful than the OHS ever was...Remember, it is your decesion...become informed...this site is wonderful...only wished I'd found it before my surgury, rather than after...
Good luck my friend....

 

[Bob Bates]

Thanks James

I am trying to validate my decision about coumadin use. I assume for some reason you thoughjt your work was incompatible with a blood thinner, e.g. getting cut, shot etc? Or were there other considerations? I hope these questions are not too intrusive.
Everyone seems to be pretty laid back about coumadin , but there has to be some downsides to it?

Thanks

Bob B.

 

[Ross]

Bob I'm telling you coumadin is not a big deal. There is a whole world of hoopla about it, but it's not a big thing. The downsides--Frequent testing of your INR is probably the tops, then followed by not being able to totally engorge yourself with dark leafy greens, most energy drinks and supplements, etc, that contain Vitamin K. For the most part, you maintain eating the way you normally do and allow the coumadin adjustment for that diet. As long as your consistent with your diet, you can still have all the things you love.

I'm trying to say that alot of the garbage you hear about it is myth or old school thinking from those that have not kept up with the advancements over the years. It's really not that bad. I'm sure others will point a few things out too.

 

[ShezaGirlie]

My two cents worth....

My two cents worth....

Hi Bob,
Well, I'm kinda known for being an opinionated person, so here goes!

Coumadin is a BIG deal. Your INR will have to be monitored regularly [at least once a month] for the rest of your life. This means a trip to a Coumadin Clinic or to a Lab if you don't have your own hometest equipment. Then a wait for a phone call from the doctor or nurse to see if you're in range or if you need to adjust the dose.

If you have your blood drawn at the Lab you will develop scar tissue over time from numerous sticks. It's very convenient to have your own hometest machine. They cost around a thousand dollars with test strips costing somewhere between $7-$15 depending on the brand of equipment. If you have good insurance, you're lucky. If you don't -- be prepared to shell out the bucks regularly -- for the rest of your life.

Many things affect the anticoagulation/coagulation of your blood...such as heat, foods and alcohol. And then there's Rains' dog who gets in the flower bed and makes her INR reading crazy.

You could become a stroke victim or suffer a blood clot if it's not in range. It's serious business. It must be monitored.

You're 58 years young. If you choose to be on Coumadin hopefully you'll never require any surgeries down the line. Routine tests such as a colonoscopy can play havoc while trying to lower your INR so as to not cause an internal bleedout. Those are serious. You will have to premedicate for any invasive tests.

You'll have to premedicate everytime you have your teeth cleaned. And if you have to have any invasive dental procedures, you'll have to find a dentist willing to do it while you're still on Coumadin so as to avoid the ramifications of a low INR. I had a wisdom tooth pulled while on Coumadin and I thought the dang thing was never going to quit bleeding... That's hard on the nerves! And then there's the bruising when your INR is too high.

If you like to travel, it's a pain in the patooty to haul around your own testing machine plus the strips. They have to be kept refrigerated. Yep, you'll give up a lot of 'freedom' while taking Coumadin. It's a 'freedom' from worry. And don't even think about going to a third world country...

Hope you are at peace with your decision... That's the most important part of it all. Good luck...

 

[Bob Bates]

Janie- Thanks for giving me an unvarnished opinion on Coumadin. I am sure I could handle all of the things you mentioned, as many do. And for some , there is no choice. But I am "lucky" to have a choice.

What is still a little scary however, is the pros and cons of coumadin are pretty well known, but what I don't know, is what kind of shape I'll be in to face that second OHS when I am (hopefully) at least in my early seventies. So the decision seems to ,be play it "safe" and take coumadin, or hope for the best down the road and avoid coumadin.

Again, thanks for your insights.

Regards

Bob B.

 

[ALCapshaw2]

I would like to clarify a few of the points Janie raised.

First, it is necessary to Pre-medicate for ANY and ALL invasive procedures REGARDLESS of valve type and regardless of whether you are on Coumadin or not. This is an absolute requirement for anyone with any type of valve disease.

Second, I notice that QAS is now sending 4 packs of Couvettes WITHOUT refrigeration packs. I *assume* that means they can tolerate not being cooled for a short period of time such as short trips / vacations. It might be wise to ask them about taking Couvettes on vacations etc.

Third, regarding testing, I would recommend visiting your local Coumadin Clinic(s) to determine what type of testing they perform. Look for one that uses fingerstick testing instruments to avoid the necessity of venous blood draws (needles!).

As one surgeon told me, those of us between 50 and 65 are in a 'gray area' when it comes to valve recommendation. It comes down to a matter of personal preference. Frankly, I'm a little surprised more people over 65 don't choose tissue valves since they seem to last longer in older patients (lower BP?).

One more thought. There is an alternative to Coumadin on the horizon (see AL Lodwick's website www.warfarinfo.com) that 'may' become available in the near future (2004 or so?).

And another. If you have BCBS insurance, negotiations are currently underway to provide coverage for Home Test Equipment and supplies nationwide. Hopefully more companies will follow suit.

Finally, when I accidently cut my finger on a sharp saw blade (3 small puncture wounds), I was surprised to note that it took close to 3 hours to stop 'leaking'. It made me rethink using my new chain saw (which remains unopened in it's box). At times like these, I really wish my surgeon had given me the Bovine Pericardial Valve I requested. It's easy to say 'give me 15 good years without Coumadin' and I'll be happy. I'm not sure how I would feel when those 15 years are up.

'AL'

 

[DANIEL]

Also feel one needs to consider quality of life which means differenent things to each of us, depending on many factors. I have been aware of my bicuspid valve my entire lilfe, had it reguarly montiored, was not on any meds and had no physical restrictions. I lead a fairly active lifestyle, I travel and do not have a consistent diiet or daily routine. I still look forward to many years of rough and tumble actiivities and wide ranging trips. I would like to contine to "spoil" myself with the above "impulse" activities/adventures as the occasion arises. The tissue valve I received (only 12 weeks so far) will allow me to continue my life with an aspirin a day and no other concerns for hopefully the next 12 or maybe 15 years or more. Sure if something goes awry in a few years, I could have to deal with a re-op, but with any valve choice somethnig can go awry at some early stage. For first valve go-around, the tissue at 50 yrs of age, to me, is the easy choice. Second time around, given the identifcal technology as today, I would go for a mechanical. However, I hope when my re-valve time comes, there will be more attractive options that I can consider. If I had to take coumadin , I would deal with it and lead a full life; however, I can avoid the whole issue at this time. Additionally, my big pre-op concern was if the op and recovery was so difficult and dreadful that I would regret getting the tissue and livng with the guaranteed re-op. However, aside from some discomfort and the stay in the hospital, it was not a big deal. Hey, I only go around once in life. The decision I made I can comfortably live with.

 

[Bob Bates]

Daniel- your thoughts are mirroring mine as I face AVR on 11/3/03.
I was also encouraged by your comments about the first surgery. Since that is still vast unchartered territory for me, its one thing to say at this time I'll do a second surgery, it may be another to actually have to do it. Having someone say it was doable who has been there is a big help.

Thanks again

regards

Bob B.

 

[rcatalano]

Maybe I'm missing something, but I didn't see Daniel mention anything that is a problem for Coumadin. Can you possibly specify what it is you won't be able to do? There are definitely some no-no's, but I haven't seen any real coumadin issues mentioned yet.

As Al said, the pre-medication has nothing to do with Coumadin. Heck, I was pre-medicating just for having mild AI, 9 years prior to my first AVR, and I pre-medicated with a homograft for 14 years.

When I go to my lab for testing, I get the results right there. They do a finger prick, and 2 minutes later I have the number. As for diet, I have been avoiding green leafy things, but thats about it.

I'm looking into getting the Lifescan Harmony INR monitor. I don't know if the test strips need refrigeration. But I'll still have to go to the lab monthly or every other month. From what I've learned, home testing is to get tested more often, but trips to a lab would still be required (possibly less frequently).

 

[DANIEL]

Rcatalano,

As I stated in my email:

"Also feel one needs to consider quality of life which means different things to each of us, depending on many factors."

I hope I made it clear that this is a personal decision and I am not here to convince anyone to do anything one way or another. Maybe you are missing something (that is important to me) and maybe you are not missing anything (that is important to you). Most important is that each person makes the correct decision for themselves. I feel that any valve choice is a good choice. Most important is that each of us takes the best care of our health and does not delay any procedure available to us

LIVE LONG AND HEALTHY AND HAPPY LIVES TO OUR FULLEST.

FYI: I have been pre-medication my entire life too.

Daniel

 

[fyrfytr]

Hey Bob,
One other thing you need to remember is even though you decide on a particular valve your surgeon will have the last say as to which valve will best work for you, it will depend on what he finds when he gets in there. My surgeon told me after the surgery that it was a good thing I decided to go with a mechanical valve as a tissue valve would not have worked for me.
Hope everything is going OK.

Dave
___________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[rcatalano]

Sorry Daniel, I was not trying to imply you or anyone is right or wrong. I guess I was going by the rest of your message, where I assumed you meant those activities couldn't be done while on coumadin.

As I am overly analytical, I guess I gloss over generalities and focus on specifics. But I get your point - a perfectly valid one.

 

[Bob Bates]

To Rob and Daniel- Thanks again for your input. Thats why I am on this site, to gather as many opinions as possible while I am still considering my choices for my 11/3/03 AVR.

I guess I am leaning toward the tissue (CE Perimount Bovine) valve for reasons I have mentioned before. Its not any one thing associated with taking coumadin, its sort of all the things added together. These are: some additional (but small?) risk of clotting/ stroke: testing, and retesting if adjustments needed: inconveniences associated with travel: risk of bleeding if injured in a remote place (Iused to backpack in wilderness areas, and hope to start again), or even on the street (I ride a motorcycle): and monitoring, to some extent, food and beverage (alcohol )intake.

If coumadin was just about taking a pill a day, as I understand a new drug on the horizon ,Exanta, may allow, then yes, I'd opt for the mechanical valve. By the time I have the second OHS, that will probably be the case. Because of course ,there is the re-op risks. But all of the current coumadin items are with you forever, whereas the discomfort and risks for the re-op are more or less a one time roll of the dice.

Anyway, again thank you taking the time to respond.

regards

Bob B.

 

[ShezaGirlie]

Bob -- wouldn't it be easy to make a decision if on the outside of the little valve boxes it said, "guaranteed for life."

Another point for you might be the fact that a mechanical [however rare it is] has an immediate and drastic failure and a tissue valve has a gradual failure.

You're so fortunate to have this venue to gather opinions -- hey, another thanks goes to Hank our 'founding father.'

Why don't you motor on to Chicago and the reunion where there will be around 30-40 of us there. Talk about opinions!

 

[Rain]

Rat killer.

Rat killer.

Bob,

Let me just tell you why after being on coumadin for nearly four years I prefer my son have a tissue valve.

I know he?s apt to be rock climbing one weekend.. eating trail mix, sitting in an office, drinking coffee and getting all stressed out during the week, the next weekend he?ll most likely be at the lake water skiing.. probably camping out and not getting enough sleep, then of course there are all those girls he has to wine and dine, hopefully he?ll find time to ride that motorcycle home to visit and enjoy his Mama?s veggie cooking. While he?s here there?s no doubt we?ll have to fight the dog for rights to the flower bed!! These are just a few of the things about his life that would not be coumadin compatible...

On the other hand.... if I thought he was going to be getting up at the same time every day, getting the same amount of sleep every night, eat the same dang stuff every day, get the same amount of sun EVERYDAY, same amount of stress everyday, same amount of exercise every day, etc. of course I would recommend he go with the mechanical. And who knows what advances will be made between now and when he needs the next operation?

I know being 58 is just a tiny bit different than being 20 ... but still... a lot of the issues are the same. Obviously there are a lot of opinions on the subject. I think Daniel said it very well in his first post.

Good luck.

 

[Susan Allen]

Hi Bob,
I found out 2 years ago at age 40 I had a congential bicuspid valve which resulted in aortic stenosis. The stenosis progressed rather quickly once I started symptoms. I am having the Ross Procedure on Oct. 16th. I, like you, took careful consideration of all my options. I chose the Ross Pocedure after many many nights of research. Although a highly technical procedure, and you must find a surgeon who has much much experience, I feel this is my best choice. What I feared with mechanical is (although this is my back up plan if the surgeon gets in there and can't do Ross) mostly blood clots, sound, sudden failure and infection. The coumadin is certainly an issue but not the biggest one on my list. I realize I may face a second surgery, however, new studies show great results from the Ross 18 and 20 years out. I also feel the way medicine is progressing by the time I would need another there will be better options.
I am really grateful I had some time to make a choice and find a top notch sugeon to perform my surgery.
Good Luck in your choice.
Pick what is right for you - you'll know deep down once you make you choice it was the way to go.
Susan Allen

 

[DANIEL]

Bob,

I enjoy this forum and everyone who participates. Many perspectives, all good stuff. For those of us who have studied-up on our condtions, the technological issues involved are pretty well understood. It's those seemingly black and white areas that appear kind of grey to some of us that makes this such a great place to see other people's viewpoints.

All the best
Daniel

 

[Bob Bates]

To Janie, Rain,Susan, and Daniel: Thank you for taking the time to comment on my situation. Just when I think I have this issue settled, someone come along and brings up something I hadn't thought of.

In this case, its the idea tyhat I may be OK with that second OHS if I go with a tissue valve, but what about my poor wife? Am I being selfish to assume she will be OK with this. Actually, she is very much for the tissue valve (she is an RN) in order to avoid coumadin. But she may not realize what she is in for otherwise. This is something I'll want to discuss with her tonight, her role as caregiver.

Thanks again for comments.

Regards,

Bob B.