New to Forums, Need advice.

[RealtorRick]

I have been viewing the site for a month or more now and figured it was time to get involved and would appreciate anyones advice.

I am 46 and found out that I have a regurt BAV. I really have no symtoms. I am on a 6 month checkup plan in August and expect to have surgery early 2007.I was told I had a murmur at age 15 but only 1 doctor since has even heard it.

I am now searching for answers to my choices. Biological, mechanical or Ross Procedure. A friend called to tell me he had Ross at my age and is doing great. My cardio says there are more problems showing up with Ross patients and he does not recommend it. I do not relish the idea of being split open 2-3 more times in my life, so I am leaning toward mechanical. I have read lots of comments and talked to people from all prodedures. Nobody has said they wished they had opted for a different procedure. When I think about , they are alive to talk to me, so they are happy with the success. I need direction. I have a lovely wife, a 21 year old son in college and an 11 year old son who I adore. Plus I opened my own business 2 years ago. I am not afraid, I am a born-again Christian and know where I will be when I leave this life. But I owe it to my wife and kids to do the best thing and provide for them. Please comment!!

 

[JimL]

Welcome Rick!
You put your finger on an important fact when you state that "Nobody has said they wished they had opted for a different procedure." We are inclined to defend the decision we made about what kind of valve to get. I have a mechanical valve, and don't regret it. But which is right for you is for you to decide. Have you talked to a surgeon yet? I've watched all of my children graduate from one school or another since surgery, and I wouldn't have wanted to miss that!

 

[geebee]

Welcome Rick.

Short of deciding to have surgery, the valve selection is going to be the tough choice to make. If you choose mechanical it is likely it will last your lifetime. If you choose tissue, at 46, you will need at least one more surgery. The decision is whether you are willing to be on coumadin vs an additional surgery.

Talk to your surgeon and cardio, read through the threads and you will be able to decide on a valve that can make you comfortable. As Ross would say - the only bad choice is no choice.

Let us know how we can help.

 

[hensylee]

Welcome, Rick. Nice to have you with us. I can't help you in choosing, but this is a subject that is possibly the most discussed one on the site, so you can expect many answers - probably before the night is over.

 

[Mary]

As Hensylee alluded to, there have been many discussions concerning valve choice. One of my favorite posts was by RobHol who posted the following after spending some time wrestling with his decision. There are no easy answers, just one that is right for you.

From Bob, February 1, 2005

"It would help so much in making this momentous decision if we had a crystal ball, wouldn't it?

If I get a tissue valve, it will last (or won't) 15 to 20 years. I won't live any longer than that (or I will) and so that will take care of me fine. Or I will be around at 80 and subject to a VR for the tissue but medical technology will be so advanced by then, it won't require invasive surgery (or it will). If I get a tissue valve, won't have to have coumadin more than 3 months, which is the norm (or I'll be the exception and have to have it longer).

If I get a mechanical valve, regulation of the thinners won't be a problem (or it will be a pain), and the mix will never get out of whack (or it will, and cause clots or bleeding). The ticking sound won't bother me, even though I am a light sleeper (or it will drive me crackers). The mechanical valve will last forever (or I'll have some sort of accident, and it won't after all). I won't ever be far from a clinic and so will be able to keep the coumadin nicely regulated (or I'll be far away from one, in Timbuktu or somewhere, and too klutzy to do the self-regulating).

I want to go for quality of life. No, I want to go for quantity of life.

I am not trying to be flippant. You have given me a lot to think about. I am going to call my surgeon's office tomorrow morning and see if I can get one more session with him to discuss more fully the options. . .

This is an awfully big decision. Where is Solomon when you need him?"

 

[amerz73]

Good Luck!

Good Luck!

Rick,
Its been exactly 1 year since my surgery. I can't tell you how different my life has been since my surgery. I have more energy, fun, excitement, and work to do(thanks to my wife) than before.
Regarding your selection of mechanical vs bioprothetic or a repair. You have to look at your lifestyle to make that decision. My wife and I had decided that if the surgeon had to replace we chose a mechanical. I can remember vividily talking to the nurses in the pre-op anethesia room that at my age (32) and lifestyle, active, being on coumadin would not be recommended. In a matter of seconds I chose a horse valve as the replacement. Luckily I had a repair and nothing was needed. I do recommend The Cleveland Clinic. My cardiologist is Dr. William Stewart and my surgeon was Dr. Lars Svennson. Both are great.
It is a very difficult choice but it will be easier as time goes on. Have a good one.
Aaron

 

[Marguerite53]

Welcome to our wonderful commuity. I'm sure you will have and will instigate valuable insights and information to share, so thanks for joining us.

You are lucky to have time to consider all of your options. Then again, the more you learn, the more you can drive yourself nuts trying to decide. Waffling will become a new verb in your life!!

You definitely want a surgeon who is very experienced with valve replacement or repair, or ROss procedure to do the work. If you have questions about the Ross, perhaps you should have a consultation with a Ross surgeon to gather more information and statistics. Surgeons are very good with statistics!! Their success depends on it these days! If your insurance will cover it (or if you just want to pay cash) my experience has been that surgeons are very willing to have you in for consultation. Yes, they're busy, but you are a potential customer and they are very forthcoming with their experiences. Keep in mind, though, they may see you as readier than you are ready to be!! And, they may see it as somewhat "cart before the horse" if you arrive pre-angiogram, or ahead of the cardio's referral. But, if you want information.....they're the guys to see!

Ultimately it is you and your family who will live with your choice. I had an instinctive reaction to my choices when I first learned of them. I've tried to be logical, visionary, and welcoming of other's ideas since Sept of 2003, but in 2 weeks, I'll be going with my gut.

The wonderful thing is that for most of us, whichever choice we make, we still get to feel the sunshine on our faces and continue on with our lives.

Good luck on this journey. We're here anytime you need us!!

Marguerite

 

[Mike C]

Once you make a decision be careful how or why you change it, specifically if it is about coumadin, many uninformed people.

my opinion is many times its best to avoid multiple surgeries, each one carries some risk and each multiple one carries more risk. Some people breeze right through it and others struggle. going mechanical has best shot at avoiding this. however, you may or may not tick and will be on coumadin. lots of threads on both issues.

 

[Karlynn]

I can remember vividily talking to the nurses in the pre-op anethesia room that at my age (32) and lifestyle, active, being on coumadin would not be recommended.

Aaron,
Would you mind sharing with us what type of lifestyle you have and activities you do that made the nurses tell you you shouldn't be on Coumadin?

Many medical people who think they know all about Coumadin know very little in reality and have no reason (or authority) to be making the recommendations that they do - such as those pre-op nurses. If that were me in that circumstance I would have been furious with those nurses and reported them to the hospital and my surgeon. That was incredibly irresponsible, if not bordering on practicing without a license. Your surgeon should have been the one to inform you if he felt there was a problem not a nurse who met you for the first time in the pre-op room.

Aaron, this is not a criticism of you. We are confronted with many things when facing surgery, so it's hard to know which direction to look next. One of our members, Randy, had a nurse make a comment about how horrible Coumadin was and that she couldn't believe he was making a choice that required him to take it. Fortunately, he had done research and knew she was speaking unintelligently and I believe he was going to report her.

Depending on how long it has been since your surgery, you may want to do the next soul that these nurses decide to give "advice" to a favor and let your doctor or hospital know what you were told, particularly at the time your were told it. Maybe a tissue valve would have been the right choice for you, but these nurses had no real way of knowing it and certainly didn't know as much as they believed themselves to know. After having made such a decision I would not have wanted a nurse telling me I'd made the wrong one right before going in to surgery.

If the scenario was the opposite, had Aaron chosen a tissue valve for a backup to a repair, instead of a mechanical and these pre-op nurses told him he was foolish for getting something that would make him have more surgery - that would have been equally as egregious.

 

[amerz73]

coumadin

coumadin

My lifestyle is very active. I have researched the side effects of coumadin and decided it was the best choice I could have made. I have come to terms with the fact that I will probably have another 2 surgeries in my lifetime.
I am very active. I am always doing something whether it be yard work, coaching fastpitch softball (been hit several times this year with a ball), phys ed teacher, basically I am always on the go. There have been several instances were had I been hit or injured I am sure I would have had to get emergency treatment. I have been researching different types of valves and I feel confident that a tissue valve in the future is just years away that will allow the patient to be off of coumadin.
I also have close friends who are on coumadin and they for the most part don't recommend it. A good friend of mine had a similar surgery 1 week after me and had to have a mechanical valve. It took her months to get the dosage right. I guess the biggest turnoff to me was having to adjust my lifestyle. I don't want to worry about what foods have too much vitamin K, or how many beers I can have with dinner.
Also, I actually had a very good surgery. I would not hesitate to have another one. The day after was not that pleasant but all in all I had a very good experience.

 

[Karlynn]

Aaron, as I mentioned my wasn't a criticism of you, but outrage at nurses giving valve choice "advice" to a patient about to have surgery.

Your "on the go" lifestyle would not be a negative to someone on Coumadin. Most of us live "on the go" lifestyles. All you need to do is take a look at the active lifestyles forum to see that. Getting hit by pieces of fast moving sporting equipment on a frequent basis could be a problem.

Unfortunately, those of us who take Coumadin know that the biggest problem with Coumadin is that there is still a lot of the medical community that does not have a firm grasp of how to manage the drug.

You may want to refer your friends to Al Lodwick's site www.warfarinfo.com He is a pharmacist (a member here!) and a registered anticoagulation specialist. He travels extensively speaking to medical professionals and has served as an expert witness in several law suits. He knows his "stuff" more than anyone I've run across. Quite frankly, people who have continuing problems with Coumadin management are probably relying on someone to manage it who doesn't know as much as they should. And this includes doctors. If your friends are telling you that they can't eat or drink certain things, tell them our mantra "Dose the diet, don't diet the dose". In otherwords, they should be able to eat what they like.

 

[twinmaker]

Welcome to the family, Rick! I'm sure you will learn a lot from all the folks on this site with all of our many experiences. I know I've learned a lot in the past several months since I joined. And I am someone who's had 2 OHS and have been on Coumadin for almost 25 years! After all this time, I'm still learning something new. The choice about valve types is one of the favorite topics around here. I have had a mechanical mitral valve for almost 25 years. I obviously feel that I made the right decision since I haven't had to have a third OHS (as of yet, anyway). And I'm sure that our folks that have had tissue valves implanted feel they have done the right thing also. Only you can ultimately decide what is right for you and your circumstances. Just try to get all the information you can. That's where this website comes in. The people here have pretty much been through it all. I will keep you and your family in my prayers as you make your decisions. LINDA

 

[aussigal]

Hi Rick... welcome from me too

I am a little younger than you @ 41 and am having my surgery in less than 2 weeks...

I am going Mechanical ... actually I wasnt really offered a choice but was very happy to accept my Cardios and Surgeons choice of a St Judes Mech.valve...I too dont fancy 2 or 3 turns under the knife and ice...I put my trust and life in the hands of these 2 guys and left it at that.

I am a busy young mum of 3 sons who have inherited my dodgy valve as well...I have things to do and a life to lead also a nasty little aneurysm in the way at the moment which is about to be removed!

Back in September '05 when I first stuck my head in here I had no-idea what I was in for ...Now I am very excited about my new life that begins in 13 days!...sure I have had plenty of why me what am I going to do moments and lots of depressing thoughts but I am well and truly over the worst of that due to the generosity and support I have found here amongst these wonderful people...

God Bless

as I often say...ask us lots of questions and you shall get lots of answers

 

[Karlynn]

Ton and Rick, my children are the biggest reason I am happy with my mechanical valve. I was young (32) when I had my valve replaced - but more importantly for me, my children were young as well (5, 7). My replacement allowed me to take back a "normal" life from one that had been seriously debilitated do to the bad valve. I was so glad I didn't have to worry about a deteriorating valve (and putting my kids through another time of Mommy not being able to do many things with them) as they grew. I figured I probably would have been going through the decline and replacement of a tissue valve at the time my children were in high school. This was, by far, the most busy, hectic time of their lives - for me (They are in college and still busy and hectic - but I'm not )

Mechanical worked (and is continuing to work) for me. It gave my family a normal life after my children having to spend their first years of their life living with a "sick Mommy".

Rick - a post above mentioned the possiblity of having to stay close to a Coumadin Clinic. I highly recommend home testing (or travel testing ). I test once a week with my home monitor. Some people only test once a month, so even if they go to a clinic, having to stay close isn't an issue. I've traveled to Europe twice with no worries. Coumadin does not keep me tied to my home town.

 

[Ross]

One thing people often over look about multiple surgeries. Your heart is traumatized each and every time it's monkeyed with. There is scar tissue to deal with, new areas to be cut on that could lead to additional troubles with arrhythmias and so on. While some people can go through one surgery with no trouble, that may not be the case the next time. In fact, some people don't have a good experience there first time and even less so the second time. I've been on this side of the ship and I can say with 98% certainty that I would not make it through a 3rd surgery, so please take all of this into consideration.

 

[hpuehler]

Rick,

I am 36 years old and I had an AVR with a St. Jude mechanical on January4,2006. My surgeon was Dr. Samual Durham from the Medical College of Ohio. In Toledo. When I asked my surgeon what he would get, he said a pig valve. He is in his 50's. Then he said at my age mechanical would probably be best. Keep in mind the younger you are the quicker your body can use up the tissue valves. The ticking was a HUGE bother for the first 2 months. Now, I hardly hear it unless I am working out or am sitting quitely at the computer. The Coumadin really has not been any big deal other than the lab draws each week, then every two weeks. Soon it will be once per month. I am not a big drinker so that was not an issue, although i wish I could tie one on now that I can't. Oh well, I feel better than I have in five years. I didn't realize how bad I felt before.

Good luck with your decision. It is yours to make. Go with your gut! You can rationalize all of the options, so it comes down to what is right for you and your family.

Heather

 

[KAJ]

Welcome Rick,

I was in the waiting room for almost 4 years. Like you, a doctor heard murmur when I was about 18 but he stated it was a "functional" murmur (whatever that is). I spent 20 years in the military and not one doctor ever heard the murmur. It became noticable in my early fourties. I just had my surgery a year ago this past March, two weeks after my 47th birthday.
About the last 8 months or so before surgery, I could not stand up for very long when we sang songs at church. I would get very tired.
I wanted a tissue valve but surgeon strongly recommended the mechanical. Due to my past history, he felt I might not survive another surgery.
Despite my initial fears, coumadin has not been any big deal. I honestly do not think I have ever felt better. I now have more energy, I no longer have to sit down while singing in church, and I more laid back.
Please do not hesitate to ask any questions.
Take Care and God Bless!
Karl

 

[Geo]

Welcome

Welcome

Rick,

welcome. This brings back some strong memories. I am 9 weeks post op for an AVR. I know for me trying to decide on tissue vs mechanical was the toughest decision I have ever had to make. Even with my wife having two OHS and living through it with her, it was like starting from scratch. she has a mechanical valve. I chose a tissue valve, at age 47. I had done so much research I was getting dizzy with all the pros and cons for both choices. I chose tissue based on my cardiologists and wife's advice. I have a back that tends to give me trouble and staying away from coumadin would give me more choices for dealing with my back.

I was ready to go back to work at the 6 week mark and ended up throwing my back out. I think it was from all the inactivity, but I have been on naproxen and a muscle relaxant. I feel like I made the right decision now, for me. It is such a personal choice based on your life style and other health issues that you may have. I do not look forward to another surgery but I hope to get as much time from this valve and live each day to the fullest.

Best of luck in your decision. Once you make it, you will fell so much better.

George