New to the site

[maras1]

I just found this site yesterday and think it's a godsent for those of us who are trying to learn about AVR. I am 52 and have been told that my valve should be replaced in the next 6 months. I have very minor symptoms, slight heart pain and shortness of breath when exerting myself but no other real problems. My cath showed my arteries were 'crystal clear' which I am very happy about. My biggest concern right now is, of course, mechanical vs tissue. From reading the posts I understand that after your surgery you should not second guess your choices and live the best you can with what you have. My question though, contrary to what I have just said is, if you were to do it all over again, would you make a different decision? To be truthful, I am very wary about Cominin because my mother was on it for a different problem and she did not do well on it.
Thanks for being here and I hope to contribute in the future.

 

[cp172]

Hi,

I had a repair so I can not be much help with the tissue/mechanical issue. I am 53 and was having problems with my mitral valve.I was told that there was only a 10% chance of repair so I had picked out an On-X mechanical valve if repair could not be done. This valve was also my surgeon's first choice.

Do some rearch in the valve selection forum and you will find a lot of data. VR folks with tissue and mechanical will be along shortly to give you their thoughts. Ask all the questions you have and you will get answers here. Talk with your surgeon, do your research and then you will have all the information to make an informed decision. Welcome to VR.

 

[WayneGM]

Welcome to VR. Glad you found us. Since I was lucky enough to have a repair, I won't comment on my valve choice. All I'll say is that there are pros and cons to any choice, and there's no wrong answer if you make an informed decision based on what are the important attributes for you. It may be helpful to list the attributes and score them to see which choice might be most aligned with what you value. Best wishes and good luck with your decision. Again, welcome.

 

[Rich]

Welcome to the site, you are in the right place.
I was 58 at the time of my surgery and my surgeon told me I was too young for a tissue valve. I have had a St. Jude mechanical for almost twelve years and have been on Coumadin for that time. It has not been a problem.
Once you get responses from others as well, you will most likely find that Coumadin might be a little pain in the neck sometimes but really it is not a big deal. And it has not stopped me from doing anything including things like heavy remodeling around my house.
Valve selection can be a tough choice and it is your choice to make.

Rich

 

[Bina]

Hello Mara and welcome to the group.
To answer your question: Yes, I would choose mechanical again.

 

[geebee]

Welcome Mara,

You are lucky in that you can make a choice. Many of us did not have the choice initially. However, for my last surgery, I did have a choice and I chose mechanical again. I have been on coumadin for 28 years (half my life) and it has not been an issue. I have not altered my life at all, not diet, not activities and have had 3 major surgeries after starting on coumadin.

However, there may be reasons for you to choose a tissue valve so you and your surgeon will team up to make the final decision.

 

[ALCapshaw2]

Welcome Aboard Maras !

The MAIN problem with Coumadin is INEPT MANAGERS who overreact to slight 'out of range' INR readings and/or who simply do NOT understand how the drug works.

I am going to give you some homework that will hopefully bring you up to speed on some of these issues.

For AntiCoagulation information, one of the Best Sites is www.warfarinfo.com created by AL Lodwick, a Registered Pharmacist and Certified AntiCoagulation Care Provider who recently retired from being an AntiCoagulation Clinic Director. He is now traveling around the country giving Educational Seminars to Hospitals and Clinics on How to Manage AntiCoagulated Patients.

The Best Way to avoid an inept manager is to learn how to Home Test and Dose. See our Anti-Coagulation Forum for LOTS of discussion on these topics.

To my mind, the latest and greatest in Mechanical Valves is the On-X Valve which was introduced in 1996. See www.onxvalves.com and www.heartvalvechoice.com My second choice is the St. Jude Master's Series Valve which has a 30 year track record for durability. See www.sjm.com for more information.

The Top 2 Tissue Valves are Bovine Pericardial (Carpentier-Edwards) made from the pericardium of a Cow's Heart and the 'improved' Porcine Valves (I don't remember them all). See the Valve Selection Forum for more info.

Happy Reading

'AL Capshaw'

 

[Cooker]

Welcome to the zoo....I guess a lot of us have "what if" before.....I have.....but the more I did it the more it became evident that was a total waste of time......I don't have any problems with coumadine/warfarin and I sure don't want another AVR if I can help it so I would say that I am ok with my choice.....I think there will always be times that I will say "if I had tissue this would not be an issue"....but I also know that if I had gone tissue at age 50 I would have to have another AVR and although mine went perfectly I don't want to do it again.......talk to your doctor and make the best choice for you.

 

[Freddie]

Maras1 Welcome to the family.

My choice - a repair or replace with a mechanical "because I don't think you want to go through this again" was my surgeons words. Would I choose mechanical again......sure. I put my trust and faith in my surgeon - after all, he knew what he was talking about

As for the Coumadin, everyone is different and it takes time for Coumadin to adjust to the body. But don't be afraid of it - it no worse than a vitamin pill
You have found US and there are much wiser members than myself to help you and guide you in regards of Coumadin.

So, ask away, anything you want. No question is EVER dumb or silly. We're here to help and to guide you.

Cheers

 

[CHDDoug]

Hello and welcome! I was 33 years old at the time of my AVR and I went with the Ross procedure. I didn't want to take Coumadin for the rest of my life (and I know many do well on it), but it was a personal choice for me...as it should be for anyone. I'm very active and don't want to have any restrictions on activities. I would absolutely go with the Ross again...given that I had a VERY experienced surgeon do it again (as I did with Dr. Ryan in Dallas).

We are all here to help! Please lean on this group for support and education. You'll get alot of both here.

Take care and I wish you the best!

 

[ponygirlmom]

I am 52 and have been told that my valve should be replaced in the next 6 months.... I am very wary about Cominin because my mother was on it for a different problem and she did not do well on it.

I could have sworn that I've read members talking about blood-thinner "trials" before surgery. Of course, if you don't need them pre-surgery, maybe it would be bad for you to try them out.

Personally, I have a bovine valve. One of the reasons is that I have other medical problems and my doctor was worried about how I might tolerate blood-thinners.

 

[maras1]

Thanks to everyone who has responded so far. I checked out the web sites suggested by Al. I was not aware 50% of tissue choosers ended up on Coumadin anyway. Freddie hit my biggest fear, I don't want to go thruough this again. I'm fairly active though and like to camp, kayak, and road bike among other outside activities. I started paying attention to how much I cut myself since I read it's the daily things you need to be most cautious about. In the last 2 days I got a paper cut, cut my finger with a knife opening a package and jammed a staple under my fingernail. These are normal everyday things, maybe I'm not a very careful guy. I had never heard of the Ross procedure before finding this site. It sounds like a possibilty and I will have to do much more research before making this decision. I am still interested to hear if anyone would change if they were to do it again.

 

[Lionheart]

Maras1,
I too struggled with the Tissue vs Mechanical valve decision. We are blessed to even have this decision. Neither is better than the other. Either one will work and increase the quality and quantity of your life. The differences between them are their associated risks and your willingness to accept those risks.
The Flowchart post is a good start as it exposes some of the risks associated with each type. But it is difficult to get unbiased information about those risks. For example, some suggest that people with active lifestyles should consider a tissue valve. What exactly is an active lifestyle? It will vary depending on the person. For some its bowling every Thursday night, for others it's wilderness travel four days from the nearest road.

I'm 53 and I chose a tissue valve. I was willing to accept the risks associated with that type of valve such as another operation and I was unwilling to accept what I understood were the risks of a mechanical valve. I did pretty well with the last operation and do not look forward to the next one, but hopefully it will be many years down the road. At this point my main concern about the re-op is whether I will still have good insurance to help cover the costs. Otherwise I am happy and I would make the same choice again in a heart beat.

John

 

[Freddie]

Maras,
Please take note that it was my surgeon who said "I don't think you want to go through this again"

I just want to clarify that statement.

This is a personal choice, so in all due respect, talk to your surgeon and find out how he feels in regards of valves.

Its not a big deal if you cut yourself while on Coumadin, you'll just bleed a tiny bit longer. Coumadin removes the vitamin K in your blood, which is the blood clotting agent. Providing you don't cut yourself to the point of needing stitches you should be just fine. Little cuts and scrapes are no big deal. Give yourself a black eye (like I did) thats something to be somewhat concerned about.
Hope you were cutting 'away' from yourself when you were using the knife
ahh, maybe trying using scissors instead of a knife - and cut away from your body

 

[Philip B]

Valve Choice Issues

Valve Choice Issues

Welcome!

I was fifty-one when I had AVR surgery. Replacement of my valve at the time of my surgery was less of a concern than the aortic aneurysm I had developed. I presented no symptoms even though I pursued a very active lifestyle.

As others have stated, valve choice is a very personal thing. It also tends to be a rather hot topic among forum members. I opted for a mechanical and I've been happy with my choice.

Coumadin use has not been a big issue for me. I continue to pursue the same activities that I did before my surgery. I frequently note the comment others make about wanting to avoid the restrictions imposed by coumadin. What restrictions? In a conversation with my cardiologist last week, he told me the only activities that he would prefer I not engage in were professional football and professional wrestling. I can live without doing those activities.

Yes, if you get cut, you'll bleed and if you get hit, you'll bruise. I think people who aren't on coumadin bleed when they get cut and bruise when they get hit too. Even people who aren't on coumadin should be careful and wear appropriate protective gear for the activities they pursue.

Good luck with your decision. Which ever valve you choose, it's a choice that will place you in a better situation than you presently have with your defective original equipment.

-Philip

 

[Ross]

Thanks to everyone who has responded so far. I checked out the web sites suggested by Al. I was not aware 50% of tissue choosers ended up on Coumadin anyway. Freddie hit my biggest fear, I don't want to go thruough this again. I'm fairly active though and like to camp, kayak, and road bike among other outside activities. I started paying attention to how much I cut myself since I read it's the daily things you need to be most cautious about. In the last 2 days I got a paper cut, cut my finger with a knife opening a package and jammed a staple under my fingernail. These are normal everyday things, maybe I'm not a very careful guy. I had never heard of the Ross procedure before finding this site. It sounds like a possibilty and I will have to do much more research before making this decision. I am still interested to hear if anyone would change if they were to do it again.

Hello and welcome.

Please come down and check the anticoagulation forum also.Read the stickies at the top of that forum. You've just stumbled into the best possible place to be when it comes to Coumadin. Things have changed so much over the years, with self testing and self dosing, the problems of old are being eliminated. As Al Capshaw pointed out, the largest single problem is inept managers that still do not know how to dose. We see it everyday and strive to educate people on the proper way to dose.

Your fears of cutting yourself are pretty much unfounded. Sure your going to bleed, but no one here has died yet from paper cut, shaving with a razor, or even stapling fingers together (I'm real good at that if you need instruction ) etc. You'll bleed a little longer, but you stop the bleeding as you always would with direct pressure and a little more time. Also see the active lifestyles forum. People have not stopped doing things they love. Protect your noggin and live your life. No reason you can't do the things you always have. This is the problem, way too much myth is being circulated about the drug. We will dispell nearly all of them.

I went mechanical because I,like you, do not want to ever do this again if it can be helped. There are no guarantees and sometimes, mechanical valves do have to be replaced, but it gives you the best chance of never having to do it again.

 

[Lynlw]

50%????

50%????

Hi Marie, I usually stay out of valve choice threads, but saw you wrote this and since that is not true wanted to correct this info. and actually was sad to see noone else earlier

--------------------------------------------------------------------------------

Thanks to everyone who has responded so far. I checked out the web sites suggested by Al. I was not aware 50% of tissue choosers ended up on Coumadin anyway.


I'm not quite sure where that number came from it is simply not true. (Most by a far majority or the tissue valve people I know do not take Coumadin, actually there was a poll here (and I realize it is not scientific but it is the experience of the people here) and there were probably at least 50 people that answered and 1 or 2 were on coum. I'll see if I can find the poll and bump it so more people can answer it.
NOW maybe they were talking about SOME surgeons put all there valve patients on Coumdin for the first weeks/month, but even that is not routine.
Did you check the recent studies Al post in this forum? Many leading centers are giving more tissue valves at younger ages, and one of the reasons they (surgeons) site is not taking coumadin, which would not be the issue if a big number of tissue valves ended up on Coumadin.
Coumadin is NOT as scarey as some people make it to be,especially with home monitorring ect. but it also should not be down played as like a vitamin.

 

[Ross]

We can't really use the poll for the number because not all members were pulled, just a tiny amount. We don't know the exact specified number of tissue folks on Coumadin, but I'd place it around 10 to maybe 12% and of that number, these would be elderly folks for the most part or those with afib and/or previous blood clots or DVT.

 

[Susan BAV]

Thanks to everyone who has responded so far. I checked out the web sites suggested by Al. I was not aware 50% of tissue choosers ended up on Coumadin anyway. Freddie hit my biggest fear, I don't want to go thruough this again. I'm fairly active though and like to camp, kayak, and road bike among other outside activities. I started paying attention to how much I cut myself since I read it's the daily things you need to be most cautious about. In the last 2 days I got a paper cut, cut my finger with a knife opening a package and jammed a staple under my fingernail. These are normal everyday things, maybe I'm not a very careful guy. I had never heard of the Ross procedure before finding this site. It sounds like a possibilty and I will have to do much more research before making this decision. I am still interested to hear if anyone would change if they were to do it again.

Welcome to the site; glad you found it.

I've only had my tissue valve for five years; I got it at age 42 and I'm glad I chose it. I don't know how long it will last and the surgery is pretty rough. People recover at different levels and my recovery wasn't a bad one.

Regarding the 50% stat, I don't think that is accurate. A member here polled tissue members in this regard some time ago and between 90 and 100 replied and only one of them was still on Coumadin and I think their surgery had been a recent one.

I was temporarily on Coumadin for three months post-op and from what I have read, that is not an unusual situation. I just take one enteric baby aspirin each day now, as do many or most tissue valve recipients. So if you cannot tolerate aspirin, you would want to check with your doctor in regard to that.

Best wishes.

[edit - Ah, Lyn just bumped that old tissue/Coumadin poll up and happily my memory was correct.]

 

[Lynlw]

We can't really use the poll for the number because not all members were pulled, just a tiny amount. We don't know the exact specified number of tissue folks on Coumadin, but I'd place it around 10 to maybe 12% and of that number, these would be elderly folks for the most part or those with afib and/or previous blood clots or DVT.

OK, I just wanted it corrected that 50% was VERY HIGH, I bumped the poll, I was surprised to see there were 91 responses, hopefully we can get even more info now

editted to add out of the 91 , 1 memeber was on Coumadin and they had Afib before surgery and the maze