Please allow me to introduce myself....

[Farid]

Hi,
I'm new here. Please allow me to introduce myself; my name is Farid. I'm 45 years old. I'm happily married and have a daughter, Jessica, who will be five years old in March.

I want to take this opportunity to say that this is a great site. Thank you all in advance for the support you provide here. I do not feel so lonely anymore. I’ll deal with the depression after I gain more knowledge.

Now, to my condition, I knew I had a murmur for a long time, which never bothered me. I use to lift weights 4 times a week for years, play handball for hours, and never had a problem.

My only problem was migraines since I was 17. When they hit, I would go in a dark room from a few hours to as long as a day. After seeing many doctors, I finally found a doctor who solved the problem in 2004. There is a reason for this background history.

Accompanied the migraines were always severe back, shoulder, and chest muscle pain. Once I took the medications the doctor gave me and the migraines were gone, all muscle ache / pain went away except for a minor chest pain.

My physician referred me to a cardiologist. In early 2004, he identified the leak. We agreed at the time on frequent tests (every six months) since I did not have any previous records. Although, all my previous doctors knew I had a murmur; none of them referred me to a cardiologist, and I never had a heart test.

Things were ok up to late July of this year, and then I got the news that I crossed a point. My cardiologist recommended and later performed a catheterization. I was diagnosed with a leaky aortic valve. I understand that it is called Aortic Valve Regurgitation. I was then referred to a specialist. And since then I saw two more. They said the same thing.

Now, I need to learn and make a decision on what kind of a valve to choose. I’ve been reading as much as I can before asking questions; but it is hard to absorb all the info in my state of mind. The more I read here, the more I know there is a lot more to know. This area is not my cup of tea. So, forgive me if in the future I ask unintelligent/ intuitive questions.

Sorry for the long write-up.
I'm so glad that you folks are out there.
(If this post is in the wrong place, please inform me.)

 

[Karlynn]

Welcome Farid! I'm glad you found us. It really is comforting to know and have access to many people who have been in your similar spot. Don't hesitate to ask questions. At 45 you are in a real gray are for valve choice. A tissue valve will guarantee you a redo in 10-20 years (covering best and worst case scenario). Mechanical valve could last you a lifetime, but you will need to take Coumadin the rest of your life. (Although the new On-X valve holds promise for a "lesser" form of anticoagulation.) There's a thread at the very top of the Anticoagulation forum that will give you a thumbnail overvier of Coumadin.

My daughter was 5 and my son 7 when I had my valve replacement. I was 32 years old. I'm sure your thoughts continue to go to your daughter and wanting to there for her for the long-haul, and I'm pretty absolutely certain that you will be able to be.

Take a look at the Active Lifestylses forum to give yourself assurance that life after valve replacement can be as active as you want it to be.

Ask any questions. There's no such thing as a dumb question here. I've had my valve for almost 15 years and I'm still asking questions.

Best wishes!

 

[Farid]

Karlynn,
Thank you for your input. I'm keeping a log of terms that i do not know and questions to ask.

Why do you say that I?m in a "gray area?

I need to look at "the new On-X valve holds promise for a "lesser" form of anticoagulation."

I see that from your profile that you had a Mitral Valve Replacement at 32 with a mechanical valve. How did you make that decision?

I?m flip-flopping on the hour.
I originally decided on a mechanical valve, and was trying to see if I could deal with anticoagulation. The more I learned about anticoagulation, the more I shifted toward at issue valve. I just do not want the ?severity? of anticoagulation. So now I need to look at "the new On-X valve holds promise for a "lesser" form of anticoagulation." The thing is I do not know what it takes to cause bledding/internal bleeding.

I?m working hard on avoiding a second operation. In other words, steer away from tissue valves. I am one of those people who hate the intrusion into ?my space/body.? I do not like to get examined, not even an eye exam, never mind an operation. But, I do it all biting the bullet.

That is not to say, I will not select a tissue valve, but 10-20 years means to me 15. I?m 45. If I?m cringing at an operation now, what I?m I going to do at 60.
I think I?m ranting.

My operation is schedule for 07 November. That is less than 30 days away..

 

[Karlynn]

Gray area - means that you are at an age where the choice gets harder. A tissue valve will last you longer than it would if you were 30, but you are still guaranteed another replacement if you live a long life.

I would add, however, that for me, part of my decision (which wasn't such a big one since I was 32) was the fact that I had 2 young children and I didn't want to put them through more of Mom's heart surgeries and recoveries. I figure that we were in Europe as a family right about the time I would have been dealing with either a deteriorating tissue valve or recovering from another replacement if I had chosen a tissue valve.

The On-X valve still requires you to use Coumadin right now, but they are doing aspirin trials. If I were to have a replacement now, it would most likely be my choice. If I were to need another valve replacement right now I'd still go mechanical. 10 years from now, when I'm in my later 50's, I just don't know.(Going mechanical doesn't guarantee that you won't need another replacement. The valve itself won't fail, but there are instances of scar tissue or clots causing problems.)

What I don't have knowledge on is whether your particular aortic valve issues would qualify you for the Ross Procedure. Basically, the Ross is where they take your Pulmonary valve and put it in the aortic position and use a homograph tissue valve in the pulmonary position. The pulmonary valve is under much less pressure than the aortic, so a tissue valve there is put in hoping that it will last a very long time. The Ross, if done, is done hoping it will last a life time. Others who know a lot more than I do about this will be along to give you the story on the Ross Procedure.

As a Coumadin user of almost 15 years, I can tell you that it hasn't inhibited my life at all. I home test once a week and do my own dosing. Take a look at our Active Lifestyles forum to get an idea of just how physically active some of our mechanical valve members are. And don't forget to read that first thread in the Anticoagulation forum.

 

[twinmaker]

Welcome to our site! We're glad you found us. I have a St. Jude mechanical mitral valve and have had it a little over 25 years! And I've been on Coumadin all that time. I had my replacement (which was my second open heart surgery...the first one was a repair) when I was 29 years old. My surgeon back then didn't even give me an option of the type of valve I was going to get. It was going to be mechanical, so the only choice I had was which mechanical. I decided on the St. Jude even though it hadn't been approved by the FDA yet. My surgeon told me that the St. Jude should last me the rest of my life. If I had gotten one of the older valves, he assured me that I would probably have to have surgery number 3. After already having two, I knew I didn't want another if I could help it. I guess my decision was rather easy, since back in 1981, there weren't all the choices there are now. We didn't have the internet, so that made research kind of hard although I did go through my old nursing books from college and made trips to the library. You have come to the right spot for support and information concerning your situation and the decision you have to make. You can learn a lot in the next 30 days. And then whatever decision you make, look ahead and not back. You have a wonderful future ahead of you. I know how you feel with having a young child. Our children were 5, 3, and 3 at the time of my replacement. That's right...we have a daughter and twin boys! A big reason why I didn't want to go through another surgery. The people on this site are like a second family to me. We all have the same thing in common and that alone makes one feel better. Not to mention that everyone here is just wonderful, caring, and willing to help in any way possible. Don't think twice about asking a question. There's a wealth of information here and people who care. Keep us informed about how you are and again WELCOME! LINDA

 

[lilbit]

Welcome Farid...

I am 30 and I chose to go with the On-X valve. I also have young children 10 and 5 years old. And I did not want to be having another surgery when they were in their teens God knows it will be stressful enough without having to worry if my valve will fail lol..With that said do your research on different valve types and ask lots of questions. Here is the website to read about the On-X valve www.onxvalves.com. Good luck

 

[hensylee]

Welcome to VR. We had a published article some time back about migraines being a signal that there can be a heart problem. Many of us have found it must be true.

Hang in here and you will get all your answers, information and support. Lots of it the doctors don't even know.

 

[chrisgreen500]

Hi Farid

Hi Farid

Welcome to our little community.

I am aortic regurge too, and had a migraine this very morning, so I know where you are coming from.

I am pre-op (not impending) also so have asked the same questions as you. Information is power for people in our position. Get yourself informed and don't just accept all that the medical people say to you. They are talking statistically, you are talking about yourself.

Have they said that the valve is bicuspid? The reason I ask is that this a common cause of regurgitation, and because you mention back pains. If they have said so, I would suggest you take a look at this link:

http://www.bicuspidfoundation.com/Medical_Information.html

It discusses Bicuspid Aortic Valve Disease, which is a connective tissue disorder, and bad backs can be an indicator. I know this all seems scary, but if you are anything like me, you are just scared of what you don't know. Once you have the information you will gain much greater control of yourself in response to your situation.

Finally I would like to say there are lots of people who have been through your journey, and you will survive and carry on, just like they did.

I wish you all the very best of luck

Regards
Chris

 

[Marguerite53]

Welcome, Farid! Happy to meet you.

I, too, was born with BAV but the murmur was never detected until I was in my 20's. With the guarantee that I probably would not have to even think about it until I was in my 70's, I danced through life heeding the cardio's advice, but not thinking a second thought about it. Ha! At 50, it caught up with me. Mine, however, is (oh!! I mean was) stenotic, or closing up due to hardening and calcification. Pesky bad valves....they can go in many directions!

Last April I had a very textbook-like AVR and got the valve I had chosen in a traditional open heart surgery. I chose tissue because I am 52, my children are all in college and for me, that particular choice was easy. My surgeon, of the same age, thought he would probably go with the same valve I chose. Everyone has a different experience. My sweet friend, here, Tonia from Perth, Australia had her surgery a day or so later and truly had a frightening and horrendous experience. Now, of course, she is fine! She is a few years younger than you and chose mechanical. She had a host of other considerations going in but truly is thriving wonderfully now. Everyone is different.

As you make your valve choice, please have thorough discussions with your surgeon. He is the one who does the 2nd and 3rd surgeries, too! His experience with re-do's could be very illuminating. Keep in mind, when/if the tissue valve fails in 15-20 years, it doesn't do so overnight. While you may not have been experiencing symptoms beyond the migraines (which is not technically a symptom of BAV, I don't think.....though the visual or occular migraines are quite prevalent amongst this group), on the way down toward your second valve job, you may. Many of us are very tired and out of breath and have other hinky sensations for years, waiting for the valve to "need" replacing. Then there would just be the living with it day by day....is it time? is it time? For me, I'm not a terribly active person. By the time I'm 65 I don't think I'll be taking up mountaineering.....I'll be slowing down, anyway. I'm hoping I decided right for ME. Of course, I may very well regret it, too. But I made the decision and stuck with it.

At some point, here, you are going to fill up your tender brain with too much information and not enough time or resource to process it all. We've all been there!!!! You will want to run screaming from the computer. When you get there, you need to shut it down, take a walk in the sunshine, play with your daughter and feel life to its fullest for a few days. You can't possibly learn all that you "think" you need to know. Don't worry. Whatever choice you make, you will undoubtedly have been blessed with another chance at living your life normally. That is the thing you need to keep forfront in your mind. You will be living. You will be breathing. You will be normal. It's all gonna be okay.

Best wishes as you navigate these next few weeks. Please start as many threads as you wish with as many questions as you have. We want to help you through this. When you said that you did not feel so lonely anymore when you found us, that comment sunk right into my heart. That is exactly what we can provide here. And we do it really well, too!!!!

Take care.
Marguerite

 

[Persianlady05]

to Mr. Farid

to Mr. Farid

Salam, I dont know if your middle eastern,I lived in iran for 10 yrs this is a great place with pple who will help you so much support we have here if you need anything let us know welcome here Ms. ANSARI

 

[Farid]

Thank Yu All Again

Thank Yu All Again

To All,
Thank you for taking the time to share your personal experience with me. It means a lot to me to be able to talk to first-hand experienced people.

I'm trying to work and can?t stop thinking about making a decision, mechanical or tissue. As I stated before, if I look at the best odds (10-20 years before replacement) with a tissue valve, I would need an operation, let?s say after 20 years. The dilemma is.....I'm OLDER in 20 years AND would have to go thought it again.

The hardest thing is not the going thru the operation it is the time after the operation, the recovery period. Am I crasy for making this decision based on that type of fear. I say that because, I recently had an operation, In&Out the same day, and was in bed for four days summed to a week at home. My friend had the same operation and was back at work on the third day. So I know myself.....I have to avoid that second operation. Am I crazy for making this decision based on that type of fear.

It seems like a mechanical valve is the best choice for me.

I e-mailed my surgeon and asked:
1. Do I have choices of different mechanical valve manufacturers? Who is the manufacturer(s)?
2. I have heard that there is a new valve called On-X valve that holds promise for a "lesser" form of anticoagulation, and maybe just aspirin? Have you used it? What do you think about it? If you have not used it, should we consider it? Here is a link to the web site, FYI, www.onxvalves.com
3. Do I need to schedule some kind of a test to see if part of the aortic needs to be replaced?
4. Can I see the valve and hold it? As an engineer that means a lot to me.
I can not wait until I hear back from him.


Some questions for the group here:
 Who keeps statistics about specific valves, failure rate, failure cause, failure analysis, failure mode?
 How do I get that info?
 Do different mechanical valves for the Aortic Valve replacement require different anticoagulation? (what is the unit for measuring anticoagulation?) or, is the anticoagulation based on the specific persons chemistry?
 How do I even chose a valve? I know this is a loaded question, but beside the engineering and statistical data, I do not know what else from a physiological aspect to consider?

What else I need to know?

 

[pipersmith]

Welcome Farid

Welcome Farid

I can see that your mind is reeling right now - as most of us when we got here. You have found the right place - full of support and information; and you are doing the right thing - becoming an informed patient.

From my perspective - your choice is less about a valve - and more about the choice between:

• another open heart surgery / recovery period
• a lifetime of using warfarin

I am 34, also with aortic regurgitation. I have four children (12, 11, 9, & 3). I have known about the problem for about a month and a half. Since I started researching - my mind/ heart/ gut pretty much just leaned towards mechanical. I DO NOT want to have another surgery if possible. I am not too worried about the warfarin. My surgeon is having me get a tubal before the procedure, as warfarin causes birth defects.

As you read, I think you will probably feel pulled toward an option. Whichever you chose - will be better than your present ailment - so either way - you are helping your body to live.

Please continue to read, and to ask - no stupid questions here - and TONS of info and support.

Best of luck!!!

 

[CathyK.]

Welcome Farid,
I am in the same boat as yourself. I am 44 and am looking at surgery at the first of the year. I, too, was confused, not sure what to do, where to go, what questions to ask. You are at the right place. This site and these people will help you along the way and tell you like it is, non of the beat around the bush business! They have been there or are headed there!

Since you are already leaning toward the mechanical, that is probably what you will end up decided after wading through everything. I, myself, was leaning toward the tissue and that is what I have decided on going with. And the decision you make will be what is right for you, what your gut is telling you. No wrong choices here!

You will eventually feel more comfortable about your situation and be al little more calm about things. I know what you mean about it taking up all your thoughts! It has done the same thing to me when I found out that surgery was here. It still takes up alot of my thoughts throughout the day. People here say the waiting time is the worst!

Good luck in your researching and let me know if there is anything I can help you with. The people here will become like your family after a little while and know exactly what you are going through!

 

[Farid]

How did you make the decision?

How did you make the decision?

Thank you Kathy. Thank you all one by one.

How did you make the decision?

The engineer in me keeps telling me to tabulate the choices, write the advantages, disadvantages, give each a weight and finally sum it up to get a handle on the outcome. The weight is the factor that puts a personal touch to the outcome. It is a process I learned in a Problem-Solving and Decision-Making class (it is a real class). Am I going nuts here?

 

[ALCapshaw2]

Valve Selection is probably the most difficult decision to make. Just keep reading / browsing in the Valve Selection Forum to see what others have written and experienced. Eventually, you will hopefully find a decision that 'feels' right for you. ALL valves have some positive and negative attributes. It seems that people who choose their valve, select the one whose negative aspects they believe they can best live with.

My first choice was for a Bovine Pericardial Tissue Valve but because of mitigating factors, my surgeon inplanted a St. Jude Mechanical valve. If I were to do it again, I would give serious consideration to the On-X valve. If you select this valve, you will likely be put on anticoagulation at the 'standard' ranges. Perhaps in a few years when results of the on-going studies come in, lower levels may become the 'new standard' with third generation valves. Even it that does not come to be, it would be comforting to know that you have a valve that is less likely to produce clots and therefore have a lower risk of stroke.

'AL Capshaw' (another engineer)

 

[PJmomrunner]

"The engineer in me keeps telling me to tabulate the choices, write the advantages, disadvantages, give each a weight and finally sum it up to get a handle on the outcome. The weight is the factor that puts a personal touch to the outcome. It is a process I learned in a Problem-Solving and Decision-Making class (it is a real class). Am I going nuts here?"

No. I think that if you're a highly analytical person this approach is the only way you will be at peace with your decision. When all is said and done, I think a good case can be made for a tissue valve or a mechanical valve or a Ross Procedure. I believe the deciding factor is highly individualized and personal. For example, your belief that you do not tolerate surgery well, I think, should be considered.

I have two parents and at least one grandparent who have/had arrythmias for which they are/were on anticoagulation therapy (two more grandparents died of stroke and the fourth of pulmonary embolism) AND I have a blood hypercoagulation disorder that causes many who have it (but, so far, not me) to be on ACT (just aspirin) AND yet, I am a person who does horribly with routine in the long run--which will cause problems with controlling INR because of missed doses AND my surgeon assures me my familial history has no bearing on what my future holds and recommends tissue. I feel that I have to know the ramifications of every known factor to make a decision. The unknowns are just that--unknown--and I can accept those knowing that I did my level best with the known.

Everyone seems to agree that once the decision is made--and acted apon--people are generally at peace with the decision. Everyone has a different personal standard, though, as to the level of information one requires to make the decision. As long as you satisfy your personal informational needs--and that could be influenced by the time you have available--you will make the right decision for you.

By the way, are you familiar with PubMed? It's a database of published medical studies:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

The Bicuspid Foundation website Chris Green mentions is also a great resource even if your valve is not bicuspid--it has some links to excellent general valve info too.

 

[Farid]

...My first choice was for a Bovine Pericardial Tissue Valve but because of mitigating factors, my surgeon inplanted a St. Jude Mechanical valve. If I were to do it again, I would give serious consideration to the On-X valve. If you select this valve, you will likely be put on anticoagulation at the 'standard' ranges. Perhaps in a few years when results of the on-going studies come in, lower levels may become the 'new standard' with third generation valves. Even it that does not come to be, it would be comforting to know that you have a valve that is less likely to produce clots and therefore have a lower risk of stroke.

'AL Capshaw' (another engineer)

It appears that I?m going into this direction, i.e. a Mechanical valve.
I just need to do more research on the St. Jude vs. On-X.

BTW, I found out that my surgery had to be postponed. I called to check on whether or not needed any test to determine if a portion of the aortic needs to be replaced. I was told that the surgeon ?not available during the week of 6 November.? So, it is on for Monday 13 November.

?a portion of the aortic needs to be replaced.? What is that called?

Do the On-X valve come with an attached ?root??

 

[Karlynn]

Do the On-X valve come with an attached ?root??

I don't believe they do, but I could be wrong.

 

[CathyK.]

Farid - I came to my decsion just by my gut feeling for me. It is a very personal decision. I did alot of researching and listening to all here and eventually made my decision. It was the decision I was leaning toward the whole time. You will eventuallly get there. I don't want to let you know my rationality for what I decided because I don't want to sway you in any direction. It really has to be what you feel is best for you! Do your research and got with your gut!
Good Luck!! No wrong choices, just what is best for you and your lifestyle!

 

[Farid]

I understand. Thank you.