confused

[sfconstrct]

Hi I am steven I origionally posted about the on-x vs. st. jude. I got my angiogram about a week ago. The cardiologist said all was very good ie; muscle, arteries, other valves said I should expect very good news upon talking with the surgeon I was looking forward to just the avr and nothing else. To my suprise and dissapointment he the surgeon Yokoyama said it looked as if my Aorta had a significant buldge and wants to get a cat scan done but as far as he was concerned sounded like he felt that he would replace the root and valve at the same time, like why replace the valve only to have the aorta possibly rupture down the road. Thus the test. Anyway it appears that alot of you have had the aorta repaired. What is the differance and or is it just as good to replace the entire root and never worry about the rupture. I guess I just wonder why so many of you had a repair vs. replacement. he said the bulge is rather common with the bi-cuspid AV. He also was really kinda down on the coumidin thing saying I should avoid contact sports I like to play basketball competive and surf which he said didn't think that is a good idea. Then he also said he feels confident about saying that the newer tissue valves would last 20 years. So I kinda got hit from two angles. I was all set for a invasive valve replacement mech. valve and get back into the water with my buddies in costa rica. Now I am kinda stunned. The aorta replacement and the lifestyle thing. Any knowledge is appreciated. Thank you all in advancement. I will get the cat-scan then try to figure out which way to go. I think I could deal with the tissue valve if it would last close to or more than 20 years. I am 50 years old. Peace!

 

[Nan]

Hi Steven,

It would seem to make a great deal of sense to take care of the aortic "bulge" while they are doing an AVR or repair. It is easy to understand why that has taken you aback so much as it was so unexpected. Better to know about it and have it taken care of than have it get larger and possibly rupture.

I would keep doing research on the types of valve and on the coumadin issue before you decide. You also have to bear in mind that sometimes the surgeon has to make a different decision when they are actually operating due to some unforseen circumstance. Hopefully that wouldn't happen with you.

It seems to me that several folks who have posted on this site are athletes and have been able to continue their sport while on coumadin.

Try using the search function so you can get more information.

Good luck.

 

[Ross]

I'm living testiment to the fact that you do not want a rupture to occur ever. Technically I should not be here typing this to you. Why I am, is still a mystery. Some surgeons prefer to leave your native valve alone if there is nothing wrong with it, but the majority are going to replace the whole shebang. It would be smartest to do it that way and spare an additional surgery. Scar tissue causes problems and this isn't an area that you want fussed with too much.

As for the Doctor and Coumadin thing---They all tell us we are eggshells and can no longer do this or that and it's total rubbish. I didn't go through these surgeries to sit in a chair rocking back and forth. Coumadin has not stopped me nor many others from doing the things we love. Take common sense precautions to protect your noggin and live your life. I'm saying this if you decide to go the mechanical route. I'm growing very tired of hearing the same crap from the medical profession when it's horse puckey.

 

[PJmomrunner]

--------------------------------------------------------------------------------
Hi Steven! Welcome to our "club" of dubious distinction! I am in the waiting room here and have not had any surgery yet, but I thought I could shed a little light on some of the subjects you brought up.

Hi I am steven I origionally posted about the on-x vs. st. jude. I got my angiogram about a week ago. The cardiologist said all was very good ie; muscle, arteries, other valves said I should expect very good news upon talking with the surgeon I was looking forward to just the avr and nothing else. To my suprise and dissapointment he the surgeon Yokoyama said it looked as if my Aorta had a significant buldge and wants to get a cat scan done but as far as he was concerned sounded like he felt that he would replace the root and valve at the same time, like why replace the valve only to have the aorta possibly rupture down the road. Thus the test. Anyway it appears that alot of you have had the aorta repaired. What is the differance and or is it just as good to replace the entire root and never worry about the rupture. I guess I just wonder why so many of you had a repair vs. replacement. he said the bulge is rather common with the bi-cuspid AV.

I have read that people with BAV's, even babies, typically have aortas that are larger than people with normal TAV's. That is to say they are dialated, not necessarily aneurysmal. Studies have said that up to 50% of people with BAV's also have aortic aneurysms. When a patient is facing Open Heart Surgery for a BAV it's because the valve is leaking a lot or it's stenotic, or some combination thereof. If it's leaking, very often the leaking is caused by dilation of the aortic root, and in that case, replacing the aortic root probably makes sense. If it's leaking or if the valve is stenotic and the aortic root is not dilated, and the rest of the ascending aorta is deemed to be in good shape, the valve alone may be repaired or replaced.

He also was really kinda down on the coumidin thing saying I should avoid contact sports I like to play basketball competive and surf which he said didn't think that is a good idea. Then he also said he feels confident about saying that the newer tissue valves would last 20 years. So I kinda got hit from two angles. I was all set for a invasive valve replacement mech. valve and get back into the water with my buddies in costa rica. Now I am kinda stunned. The aorta replacement and the lifestyle thing. Any knowledge is appreciated. Thank you all in advancement. I will get the cat-scan then try to figure out which way to go. I think I could deal with the tissue valve if it would last close to or more than 20 years. I am 50 years old. Peace!

There are people far more qualified than I to speak to the Coumadin issues (and non-issues), but as a former southern California resident, I know that every boogie boarder and surfer has a story or two of a spectacular wipe out. A good friend of mine was once surfing at County Line in Malibu and had his board whack him in the head, knock him out, and partially "scalp" him in the process. His friends saw it happen, rescued him from the surf and got him in a car and high-tailed it over the mountains to the nearest hospital in Thousand Oaks and he was fine. I have to think that the outcome may have been different had he been on Coumadin. It makes sense to consider how often you have hit your head or had your head hit when surfing in the past and it makes sense to wear a helmet (like my friend does! http://www.bossbi.com/boards/gath/gath.php) when you surf in the future if you go mechanical. Also, 20 years on a tissue valve may be a bit optimistic for a youthful 50 year old...you should read about the relative benefits of tissue vs. mechanical valves as written by the esteemed Tobagotwo: http://www.valvereplacement.com/forums/showthread.php?t=14330&highlight=famous+tobagotwo

 

[aworriedhoney]

Steven -

I am the husband of "aworriedhoney". I just had an AVR with the On-X mechanical valve. I did not have the root replaced, though. I am 37 years old, and I can only help you by recounting the reason for my decisions during my pre-op time.

First, the valve. Let's look at the latest data. While I did not spend time researching tissue valves, I also recieved conflicting information. My surgeon said the bovine (cow) valves are lasting a long time, about 20 years, longer than the porcine valves. My guess is this is expected data from the supplier not actual data. Now my cartiologist said that a tissue valve (generic) could last 20 years or longer in an older person with little activity but significantly shorter time in a very active person - like you and me - maybe 5 to 10 years. For me the decision between tissue and mechanical was not really a question. It was mechanical all the way. I do not want to go through the surgery again.

Second, which mechanical. This one is tricky and, I think, a personal choice. The St. Jude has been out there forever, but the St. Jude valve you'd likely get, the Regeant valve, has only been out since 2002. I looked at the various mech valves. My consideration is that I can possibly have this valve for 60 years, and I wanted the most advanced valve. This may mean it doesn't have lots of working data, but I had trouble dropping 30 yr old technology in my body. The basic St. Jude design is 30 yrs old. The changes they made for the 2002 Regeant valve release included decreasing the thickness of the ring to make for better blood flow for a given installed size. The On-X valve uses a carbon material that is less likely to clot than any other mech valve. They all use silicon carbide. The other advantages I saw were that the On-X valve is longer to keep pannus (extra arterial growth) from affecting the leaflet from seating properly, and the radiused inlet allows for better blood flow which also helps clotting.

So here I am with a mechanical valve not recommended by anyone (cartiologist or surgeon) other than me, and I know I'm going to be on warfarin forever. Here's why I'm okay with that. First, I have no choice. Second, my cartiologist (30 yrs of traking patients with warfarin) said the big deal is really head trauma. He said that I might want to wear a helmet if I ski. You may want to wear some type of helmet if you're surfing near lots of rocks. Third, while I'm not sure I'd ever go without some type of warfarin for blood thining for my mech valve, the On-X asperin studies may show in 10 years that the warfarin levels required might me lower than currently required.

Please let me know if you have any more questions. I have been on warfarin for a short time now. I know what happens when the INR value is very high and when it is within the medicated range.

Good luck on your decision. I know it's a tough one.

 

[tobagotwo]

Having your aortic root replaced or stabilized and your aorta repaired or partially replaced makes all the sense in the world. Doing these now will help avoid an extra surgery later, whether you choose a tissue valve or a mechanical valve. It would be particularly sad to have to go back for more open-heart surgery in three or five years after the valve replacement, particularly if you're choosing a mechanical valve to avoid more surgeries.

What you've read on the site about "repairs" is probably mostly about surgery done to repair the valve itself, which is usually not successful with aortic valves. It's much more successful on mitral valves. It's probably not related to replacement of parts of the aorta, or to work done on the aortic root.

My belief is that at fifty, a tissue valve should go about as long as its built to go. There is convincing anecdotal evidence from this site that pregnancy can shorten the life of a tissue valve, but we're going to assume that's not an issue for you.

However, I've not seen any studies that concluded that physical activity routinely shortened the life of tissue valves. That appears to have been an assumption on the cardiologist's part. Youth is the prime demon of tissue valves, apparently because of the highly chemically reactive/responsive nature of the youthful metabolism. High hormonal and chemical activity is also the rule in pregenacy, which is the other condition shown to reduce tissue valve longevity.

An equally unsubstantiated supposition is that basketball and surfing must be forbidden to warfarin (Coumadin) users. There is some added risk in rough-and-tumble or contact sports, mostly where head injuries are common and sufficiently protective gear is not worn. The question of other internal injuries is fuzzy, but you'd have to be hurt pretty badly to have to worry about it. I personally would be leery of tackle football, but that's me.

Warfarin doesn't seem to add much to the likelihood of a conscious person bleeding to death from open, external wounds, though.

Some (not all) people on Coumadin do bruise more easily, but that's not life-threatening. As such, a mechanical valve and warfarin should not mean that you have to abandon your favorite pastimes.

Either type of valve should serve you well at this juncture of your life. A tissue valve will require another surgery, probably before you're 70, the trade-off being that you'll likely not have to deal with anticoagulation therapy.

Best wishes,

 

[Lotti]

Hey Steven

Hey Steven

I was in exactly the same position as you. Went to meet surgeon knowing that I would be having AVR only to be told that my root is distended, and would need replacement or repair. By repair he meant that he would leave my root in place and lagg it with a dracon tube. This is the same tube that he would replace it with if it knackered beyond help. He also was of the same view on the new tissue valves ...that they are highly rated and should last well. It threw up a lot of new questions. I go in next weekend. I'll let you know how it went as they should be videoing the whole thing.

Wishing you all the best in you valve schoice and your surgery.
Oh i'm 37


Lotti

 

[sfconstrct]

thank you all from confused

thank you all from confused

Thanks to all of you that responded on my delema as to the suprise of most likely needing to get the aortic root replaced at the time of avr. However my wife and I are still going crazy on whether to go bovine or mechanical. She worries about alot of what she reads about coumidin. All the replies were informative but also presented arguments for both sides. Another question to those that have been there done that, ( I know this will vary) how bad was the recovery assuming the full monty chest crack now that it's over with? I guess that's a part the pro's and con's of getting the benifits of bovine or mechanical. And another surgery in 15 to 20 years down the road. Keep the comments comming thank you all. I am bumming a bit after the news of the aorta cause my heart, arteries, other valves looked so good the cardiologist said that I would be happy to hear what he surgeon had to say. AS I was hoping for an invasive procedure. He did mention in the report from the angiogram that the ascending aorta was "markedly dialated" but didn't say anything to me other than all you need is the valve. The surgeon thinks differant and I will be getting a cat scan next week so he can measure and advise. Thanks again. Steve in So. Ca.

 

[sfconstrct]

same to you

same to you

Lotti, thanks I am sure all will go well with you. Did you go mech or bovine? Talk to you sooner or later, again thx. Peace! Steve in So. Ca.

 

[OldManEmu]

Not as bad as imagined

Not as bad as imagined

I found the recovery much easier than I expected. I had collapsed into class IV CHF before surgery and the surgery had to be delayed for a week, the CHF was much worst than the surgery and recovery. I can't say the incision was anymore than sore, certainly not agonisingly painful as I imagined. As I chose a tissue valve I will get another crack at it in the future, and this certainly doesn't overly concern me having to go through it again, I think that probably gives an idea of how bad I thought it was.

 

[Dennis S]

Second surgery

Second surgery

The recovery from my AVR & Stem replacement on August 4th of this year was very difficult. I don't want to scare you, but you are getting ready to make a decision, and I think you need to know that it can be hard. I wouldn't want to do it in my seventies. You can find many opinions about this on the forum, and several are very informative.

There is one point I haven't seen considered in prior posts. If I had not had insurance, I would have paid over $100,000.00 for this surgery. Right now I have excellent health insurance and didn't suffer financial hardship. But our health insurance premiums doubled in the last 2 years before I even knew I would need the surgery. Given the steep rise in medical costs, I think it takes a lot of faith to be sure I will still have comparable coverage 20 years form now when I am 75 years old. I am very glad to know that, in all likelihood, that $100,000.00 expense is in the past, and not a part of my future.

 

[Ross]

However my wife and I are still going crazy on whether to go bovine or mechanical. She worries about alot of what she reads about coumidin. All the replies were informative but also presented arguments for both sides.

Steve please read Al Lodwicks site about warfarin/Coumadin.

www.warfarinfo.com

There are the NO NONSENSE truthful answers about Coumadin. Too many people, including the Medical Profession, feed bogus information to potential patients and we like to set them straight. It's great to educate yourselves about it too as part of the decision making process. The reason why your getting a bit of both sides is so you can make an informed choice. We can't choose for you, but we can tell you about ours and what we think, hoping it helps you in some way. I'm for anything that keeps you from additional surgery, which means mechanical, but there are no guarantees that another op isn't in the offing.

As far as recovery, your looking at minimum of 6 weeks and as long as 1 year. Make no mistake, this is a major operation. Nothing compares to it. This is also why I'd like to see you do this only once.

 

[ALCapshaw2]

I will address two of your issues here.

First, many people with Bi-Cuspid Aortic Valves also have connective tissue issues which can result in aortic aneurisms so it is best to address both problems at the same time during your FIRST surgery.

Second, many of the horror stories you hear about Coumadin came from before the creation of the International Normalized Ratio (INR) method of monitoring anti-coagulation. There was considerable variation in the reagents used for testing and therefore wide variation in the 'measured' prothrombin times. AFTER about 1990, testing methods improved by using 'relative' times against a standard and coumadin management has improved greatly.

The primary danger with being on Coumadin is from Head injuries which can be FATAL so wearing a helmet for head protection is warranted whenever there is a risk of head injury. Secondarily, internal bleeding can be an issue so it may be wise to get checked out following any 'body blows'.

You may want to read through the Active Lifestyles FORUM to see how other athletes live while on Coumadin. And be sure to read through Al Lodwick's website www.warfarinfo.com as Ross suggested.

'AL Capshaw'

 

[sfconstrct]

rocking chair

rocking chair

Hey Ross, thanks for all the help, I was curious now that you have gotten out of the rocking chair, just kidding. It appears that you are happy with the coumidin stuff, what activities, hobbies do you participate in as for that they guys you run with as well. Thanks Steve

 

[Ross]

I haven't stopped doing anything I like to do because of Coumadin. I still work on cars when I can and I guarantee a nice cut every time I monkey with one. Just open the hood and I'm bleeding. Robthatsme still uses his chainsaw with some protections of course, Hank still goes water skiing and others snow skiing, the runners run, the jumpers jump. No one I know is allowing it to stop them.

Many people make it sound as though your going to bleed to death in a minute, which is simply not true. You'll bleed a little longer then before, but you stop the bleeding the same way, direct pressure to the wound. I sit and laugh because I have sheet of no no's and one is to not use a razor to shave. Do you have any idea how many times I knick my face silly? It's not a problem and another unwarranted old time warning with no foundation.

 

[tobagotwo]

He did mention in the report from the angiogram that the ascending aorta was "markedly dialated" but didn't say anything to me other than all you need is the valve. The surgeon thinks differant and I will be getting a cat scan next week so he can measure and advise.

Listen to the surgeon. Over time, the aorta will dilate more. Then it will just be a question of time before you will need another full monty chest cracking to fix what could be done now instead.

I had the full monty chest cracking, and I didn't find the recovery from it to be that bad at all. I was rather surprised that it wasn't more painful. However, everyone is different, so you'll drive yourself crazy trying to figure out how it really feels by asking others. Most don't feel it was as bad as they imagined.

At fifty, I'd have gone with the tissue valve (which I did at 52). However, barring physical problems that force one type or the other, it's a decision that you must base on your own personality. Your survival odds are about the same, either way. At age 50, they balance each other on the scale, and you basically choose the one that has the least down sides for you. There are numerous discussions of people's reasons for choosing one type or another and their feelings about it. I suggest you click on Search (next to New Posts), then Advanced Search, then try searching for threads using "valve choice" and similar search entries.

Best wishes,

 

[BDMc]

Warfarin and Active Lifestyles

Warfarin and Active Lifestyles

I agree with Ross, and we should know! I was skiing before I went back to work after my OHS, and have done a fair amount of bicycling. Used to ride to and from work in Boston traffic. Had a "faceplant"into the sidewalk once. I had to call out "Ugly" for a few days, and I suspect bled more than the average person, but was never in danger. Got a really nasty little slice while sailing my Hobie Cat when a powerboater thought he'd flip me for fun. I was more concerned about sharks than bleeding to death. Wear a helmet surfing, think about who you are playing basketball with, (I play with the nieces and nephews, but wouldn't play with some of the guys at work). Eat a steady diet, and take the warfarin! I've had lots of medical pros tell me no contact sports etc... One expressed shock my doc let me sail! There certainly are disadvantages to being on warfarin. It makes having any surgery much more complicated, but most medical folks have no idea what they are talking about as far as the risks with daily activity, and sports. Al is our resident expert, and healthcare professional. Check out his posts if you ahven't already. I use a regular razor, and have never had a bleeding problem from any of my frequent nicks. My fifty cents... Keep us posted! Brian