OHS: for my Mitral Stenosis

[Diesel]

Hi everyone,
I am new to this forum. I just wrote in a thread that asked about Which heart problem/desease do you have....
Anyways, i Am writting to find out if anyone has Mitral Stenosis?? Iam a 25 year old female, who is going to have OHS to replace my valve. I am scared as Heck to make a decision on which valve to have.

At such a "young" age, i just dont know what is best. I would love to hear from people who have gone through this at a young age as well. What kind of valve did you choose, and how long as it lasted.

Right now if i choose mechanical, i wont have children of my own. Im not sure if im ready for that decision. BUT i do know, to lead a better healthier lifestyle, i need my valve replaced. Ive already had one open heart, and two balloon surgeries to try and fix/repair my mitral valve. It jsut didnt work. SO replacing it now, is my option.

I would love some feed back. Thanks for your help.

Diesel

 

[geebee]

Diesel,

Welcome to our family. You will get lots of help here.

I do not have children. When I had my first surgery, my surgeon was convinced he could repair my valve so we did not discuss valve replacement. Had I known about needing the valve replaced, I probably would have chosen a tissue valve since I was so young and unsure of whether I wanted children. Unfortunately I did not have a choice. I assume, to this day, that the valve I got was simply the one that was in the hospital when the surgical team had to scatter and find one.

If I were in your shoes and unsure of future pregnancies, I would seriously consider a tissue valve. Although there have been successful pregnancies on coumadin, they are very high risk. It would be preferable for you to not be on coumadin if you are pregnant.

There are a couple of other things to remember when considering a valve.

1). Getting a tissue valve does not guarantee you will not need coumdin. A very small percentage of people with tissue valves need coumadin due to a-fib or other issues.

2). Getting a mechanical valve does not guarantee you will never need another OHS. I am a walking example of that one.

3). Getting a tissue valve does guarantee you will need at least one more OHS in your lifetime.

4). Life on coumadin is not a horror story aside from the pregnancy issue. I have been on coumadin for almost 25 years with little problem.

You need to weigh your thoughts on your future and make the decision that works for you. Now, tho, you have some additional information.

BTW - you will feel terrific after surgery.

Please let me know how else I can help.

 

[Diesel]

Scarry desisions

Scarry desisions

Gina:
Thank~You so much for the warm welcome into "your" family. As a new user i am deffinately scared. Scared that maybe, i'll find my answers, scared that maybe i'm not alone anymore making desisions!!

I can't thank you enough for your information that you provided. I am going to see my cardio on wed. So im going to ask about the Tissue valve. It hasnt come up in our conversations so I'll bring the topic to him!!!

I'm definately interested in hearing from many people who have had thier valves replaced. I know that with having this one done, i will no matter what have another OHS, the question is....... how sooon do i want the one that follows this one??

Im anxious to hear from people. I definately would love info from people who have tried all different valves. I need to know what WORKS!!!

Everyone have a great day until i hear from you all!!
Diesel

 

[ALCapshaw2]

Welcome to our world Diesel!

Here is some more information that should be of interest to you.

As you know, Tissue Valves do wear out and need to be replaced. Unfortunately for you, they tend to wear out FASTER in YOUNGER people. In older patients, porcine valves may last 8 to 15 years. The Bovine Pericardial Valves have a good history with 90% durability after 15 years and many early recipients now approaching 20 years. As you would expect, most of these patients are considerably older than you.

There IS another option that is well suited to eligible YOUNGER patients and that is the ROSS PROCEDURE. There is a separate website for ROSS patients which you can find doing a SEARCH either on VR.com or Google.

The ROSS procedure takes YOUR native Pulmonary Valve and uses it to replace your defective valve. Then another tissue valve (homograft or bovine or porcine) is placed in the (low pressure) pulmonary position. We have some ROSS recipients in our membership (see the STORIES section on the main page or do a search for ROSS). I am not familiar with the longevity of this procedure, but believe it *can* last longer than tissue valves placed in the aortic or mitral position.

Not all surgeons do the ROSS so you will need to seek out a surgeon with the necessary experience and good track record. You will probably need to go to a MAJOR Heart Hospital such as the Cleveland Clinic (#1 rated Heart Hospital), or Mayo Clinic (#2), or Johns Hopkins, or DUKE, etc. This would be a good topic to raise with your Cardiologist.

Best wishes with your decision! Regardless of what you choose, your quality of life will definitely improve after your defective valve is replaced. Success rates in young patients is extremely high and most have good uneventful recoveries.

'AL Capshaw'

 

[hensylee]

mornin, Diesel. Welcome to VR. Grab a cuppa and read a bunch of posts and you will find that many others have the same problem about selection as you have. We have several who are younger than you are; they have faced the children issue, too. There will be many answers to ALL your questions, so stick in VR and wait for them to come along. It's the weekend so some may be off enjoying the weather but they'll be along soon. It's a wonderful group you have found.

 

[bvdr]

Welcome Diesel,

I had my mitral valve replaced for a St. Jude's mechanical and it works.
Really all the valves available are pretty good choices. A couple I ruled out because of the sounds they made. I wanted one that was quiet and that if I could hear it at least was soothing. For me, I made the right choice.

I too had mitral stenosis but couldn't have a balloon valvotomy since I had too much regurgitation and my surgeon said rheumatic valves are just not worth repairing. I'm older and therefore did not to consider childbearing and the problems encountered with pregnancy and the inadvisability of carrying a child when on warfarin. There is a very high risk of birth defects so an alternate method of anti-coagulation is used. It is difficult but doable from what I have read.

 

[Karlynn]

Welcome! I had my mitral valve replaced at (what I now call) an early age. At 32 . However, I had 2 children by that time. There are so many factors that weigh into your decision at your age.

Do you have a significant other right now that would lead you to think that having children in the next 5 years would be a possibility? Or do you just know that someday you will want children, with a special somone, and don't know yet whether a bio child or an adopted child is preferable.

My personal opinion (which is just offered as one scenario) would be to have a tissue valve if I was fairly certain that children would be coming within 5 years of the replacement. If not, I'd be concerned about an additional valve surgery looming in the future, possilby closer to the birth of a child, or near the time the child possibility arises. Children are pure joy, but they do also fill your life with physical and emotional demands that make it hard for room for other concerns. Of course people have these other concerns thrust on them when they aren't planning them. My mechanical valve allowed my children to grow up, graduate from high school and attend college without having to put another large life event (valve replacement) in our already busy lives. The trade off is that I'm on Coumadin and I'm not putting on my money on the bet that I will never have to have a resurgery. (But praying I won't)

To be even more confusing (sorry ). If you should choose tissue and don't have children by the time it needs to be replaced, the technology may be out there with either life-long tissue replacments, or mechanicals with no need for a medication as toxic to developing fetuses.

On the "scared" aspect - we all know the feeling. Just remember that this is a procedure that will make your life much healthier and you will feel better.

 

[Diesel]

Me again....OHS SOON!

Me again....OHS SOON!

Hi everyone!

Well i just went to my cariologist yesterday. It was an okay event. I told him how i found the website and i was trying to absorb all kinds of information. I asked if i was a canidate for the "Ross Procedure" and he said unfortunately no.

SO i went on how i learned that not only is there pig valves out there but cow valves.... My cardio realizes i am doing my research and trying to figure what valve i truely want.

I know that at my young age my cardio would like to see me with an mechanical only because i want to be so active and he is afraid that a tissue valve would only last 6-8 years. Ive had ohs before and then ive had two other procedures that just havent worked.

Some good news (well kinda good) is that they possibly can cut out the membrain that has formed itself inside and outside of my mitral valve and also across the top. So im having a hard time recieving the correct amount of blood flow, and it pools in my lungs. SOOO i might be able to advoid the mechanical if they can keep me going once they cut out the membrain. They will then take me off the heart/lung pump and see how my pressures react. if they see a sugnifficant difference than they will sew me back up. BUt if my pressures in my valve dont change then out comes my valve and in goes a new one.

SO one last thing. Ive been reading up on some of the different mechanicals. IS there really that much differance in them?? Please i would like to hear from all..

Oh and before i have been worried about children. Since i havent had any yet, and possibly if it was right down the road to have them. i know that once i have a mechanical i shoudnt. so when i talked to my cardio he has reasured me that he has sussefully helped 8 different women have children while having mechanical valves. He said that he will deffinately help me if the time aproaches. sounds scarry, but i have no reason to trust him......... i think..........

thoughts..........???
Diesel

 

[Barry]

Wondering if your heart problems are hereditary. If so that may give you a different perspective on having v. adopting children. My severe mitral valve prolapse apparantly was inherited from my dad - killed him.

You'll find that asking around here what's the best valve is a bit like asking a bunch of baseball fans who's the best team.

 

[geebee]

Diesel,

A couple of things come to mind. First, the pregnancy issue - many people have had babies while on coumadin. It is definitely VERY high risk but it does happen. I would think your cardio would not be able to state he had helped 8 women if he had not. I would be a bit encouraged by such a statement. I would also ask him if you could contact those patients.

As far as mechanical go, there seem to be 2 that keep coming up in discussions - On-X & St. Jude. The On-X seems to be promising for eventually using only aspirin therapy BUT that is very far in the future if at all. The St. Jude is the tried & true mechanical. There are others out there but these 2 seem to be foremost.

I have a St. Jude and have had no problems with it or coumadin.

 

[Diesel]

Many Decisions!

Many Decisions!

Barry and Geebee:
Thanks so much for writting back to me this evening. Just to let you all know, my condition was not inherited by any other family member. My type of mitral stenosis is just a major deformity. My valve is shaped as and works like a Parashutt (sp??)

So my mitral valve has a few different problems with it, causeing it more difficult to decide which typ of surgery is best for me. I am very lucky though that my cardio is very positive and has always been upfront and honest with me and my family. He has tried all possible routes before having to have my valve actually replaced. So i thank him for that. Even though i am not yet on cumidan i am on LOTS and LOTS of other medication, that he is very hopefull i can go off after this surgery!!! I sure do hope so I am very tired swallowing all of my meds. But we'll see when the time comes...

Thanks for all of your support, it has been very much needed and also appreiciated.... I hope to keep hearing from you all..

Diesel

 

[ALCapshaw2]

Glad to see you doing your 'homework' Diesel.

It would have been nice if your Cardiologist had told you WHY he did not consider you to be a viable candidate for the Ross Procedure. At least he knows you are aware of the options and are studying the tradeoffs.

The Bovine Pericardial Valve is a good tissue valve made from the Pericardium of a Cow's Heart and has a better longevity record than Porcine BUT, it will still deteriorate more rapidly in a Young recipient.

Look into the On-X Mitral Valve and the St. Jude Regent. Both are the latest generation of mechanical valves and theoretically have a lower risk of clot formation than the standard mechanical valves. Because of this you MAY be able to get by with a lower INR (and therefore less Coumadin) than for the standard mechanical valves. Studies are underway in Europe to determine if alternative (aspirin) therapy is sufficient for the On-X valve.