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Joined
Oct 16, 2011
Messages
10
Location
Oshkosh, WI
So I'm 35 and was born with BAS and Reg. it was always very mild and was never suppose to effect me or so I was told.... My last Echo was 3 years ago and there had been no change since I was a little girl. UNTILL a month ago... I was 12 weeks pregnant and super excited, had my echo and my world turned upside down! It had turned into a very severe and I was told that they needed to get me in ASAP and could not keep my baby alive for many weeks yet, and didn't think that i would even make it that long. So last week at almost 16 weeks we had to terminate. So this week I will be doing pre-op and it is sounding like next week will be surgery.

So there is my sad story and now I look for info, inspiration and any words of advise that anyone can give me! I am still going back and forth on what type of valve, I thought mech. But then my np said that they have made so many advances in the pig/cow valves that by the time I needed it replaced it would be more like a balloon... Any thoughts? Aftercare?
 
Carla,

Wow! That sounds really rough - so sorry about the pregnancy.

I'm 41 years old and was very conflicted about whether to get a tissue or mechanical valve. Ultimately, I chose mechanical (you can use the "Advanced Search" under my username to see in detail why, but the bottom line is that for me, I preferred the risks and lifestyle associated with anticoagulation therapy to the prospect of a reoperation. On the average, according to at least one study I read, tissue valves don't last quite as long in younger folks than in folks over 65. My research led me to believe that I would likely need another valve replacement in about 12 years if I got a tissue valve. So I went cyborg :) But, if I were a woman and having children were important to me, and a tissue valve greatly simplified that, I could see having made a different decision. Everyone on the site will tell you it's a personal decision. My wife said if she were me, she would have gotten a tissue valve (and believe me, she had all the same information I had). For her, that would have been the right decision, in part because she is terrible about remembering to take pills. I'm more type-A, so I wasn't as worried about forgetting to take my coumadin. The good news is that both options (tissue or mechanical) are VERY GOOD! I don't think you can make a wrong choice here - either way, you will be infinitely better off I think. I asked a lot of people who didn't need new valve what they would do if they were me. I got a whole spectrum of responses. Some liked tissue better because "it's more natural and works more similarly to the way the body already works". As far as the prospect of a valve-in-valve (balloon) replacement down the road, the technology definitely seems to be advancing on that front. Right now, it's only used in folks who have a high surgical risk, but someday it may be commonplace. I think most on the site would tell you that there are no guarantees, but that advancements related to both tissue (last longer; possible valve-in-valve in the future) and mechanical valves (lower-risk anticoagulation; valves that don't need as much anticoagulation) are being made at a steady pace. So the future looks bright for both. My surgeon even advised me to get a tissue valve. He believes that the new tissue valves will last even longer than the ones in most people today (search for posts by Norm-of-the-North - he did his homework and picked a great valve - he's also a case study in a journal paper now). Eventually, my surgeon agreed to give me a mechanical valve when he realized I had already successfully self-managed coumadin for another previous issue. But he installs 99% tissue. The nice thing about tissue is that for many people, once it is in, you forget about - and life goes on. A key bit of wisdom I got from this site is that there are no guarantees with either valve. With a tissue valve, you might end up needing coumadin anyway (if you get atrial fibrillation, for example). And with a mechanical valve, you might end up needing a reoperation anyway (due to pannas growth, for example). So with either valve, you are placing a bet. But they are both good bets. And if you still want to have a child, the decision may be determined primarily by that. I think others on the site would be much more knowledgeable than me on that point.

Anyway, sorry for rambling on, but by posting here you have done a wonderful thing for yourself - you've opened yourself up to a very supportive and knowledgeable community. I don't know what I would have done without them. You still have to think for yourself and make your own decisions, but there are smart and caring people who have been through every angle of this stuff that you can imagine, and they want to help you get through this.

Best of luck and welcome,
pem
 
Thank you Pem! I can really say all info at this point is very helpful... The past 2 weeks I've been so devastated just on the idea of terminating that I couldn't even bring myself to think of this part of things... Now it's going to be here fast and I want to be prepared for the next few weeks!
 
Carla, I'm so very sorry for everything you've been through in the last couple of weeks. I can only imagine how devastated you must be. Do you have any plans to try and have more children? I only ask because if so, that would play a huge part in valve choice for me. Having children with a mechanical valve is very risky at best due to the required use of coumadin. With a tissue, it shouldn't be a problem. If that is not in your future plans, and depending on your age, it could go either way. I think more and more of us are seeing Dr.'s who are more convinced that percutaneous replacement of tissue valves will be the norm in the future, including me. At the end of the day though, valve choice is a very personal one that each person needs to make for themselves. Which ever way you go, it will obviously be better than what you have now.

I really wish you the best with everything that is going on right now.

Kim
 
My heartfelt condolences on your loss!

I think I would have to agree with pem's point..."... The good news is that both options (tissue or mechanical) are VERY GOOD! I don't think you can make a wrong choice here - either way, you will be infinitely better off ..."

Read everything you can here on this forum...I know everyone has the same question, which can only be answered by you once you have gathered enough intel to make an informed decision based on what YOUR needs/wants are. If you have specific questions, please ask as I can almost guarantee someone who has come before you has had that same question. Good luck to you regardless!
 
Carla, I am so very sorry to hear about your baby. I have to agree with Kim, If there is any chance at all you want to have another baby, It wouldn't even be a quetion for me, I'd get a tissue valve. People HAVE had babies with mechanical valves and Anticoagulents, BUT it really isn't recommend by most doctors because it can be very dangeorus to both the Mother and baby.

If you don't want to have any babies, (well get pregnant and carry your own baby, some Mothers here have had their babies with surragate mothers) then the choice would be a little harder.
 
Carla,
Oh my these last few weeks must feel like such a kick in the stomach, and a roller coaster of emotions! I wish you peace and confidence in whichever valve type you wind up getting. I can only echo the others above. Your decision whether you want to try to have more pregnancies could be a big part of your valve choice. There's no guarantee with either, but it's not crazy if you go with tissue for now to try to minimize complications for future possibilities. You have to go with what's right for you . Good Luck
 
Dear Carla,
I am so, so sorry to read your post and can feel your pain so profoundly.

I was 24 when I had my first OHS in 1975 to replace both the aortic and mitral valves. Three months before I was suppose to undergo the surgery, the doctor told me I was pregnant and that neither I, nor my child, could survive the pregnancy in the condition my valves were in. So my pregnancy was terminated too....I was into my 7th week! And the worse part was that I did not have the support of my ex-husband nor his family. They all thought I gave up too quickly and perhaps I could have carried to term. There are NO words that can explain how I felt then. I was lucky my family was there, loving and supporting me, or I think I might have just ended it all right then.

When I did have the surgery, I was not given the option of tissue or mechanical valves; not even sure there was an option that many years ago. The surgeon also said that children were not a possibility, so many years later, I had a tubal ligation. The doctors felt that was the best option.

So what I have to say to you my dear, is that now there are options available to you. Discuss with your doctors what these options are and whether they think you would be able to have a child later on. Many women have had babies after OHS, so the hope is there!

Wishing you all the best and you are in my prayers!

Godspeed!
 
Carla,
My condolences on the loss of your baby. I hope whatever decision you make as to valve type is one that will give you peace of mind. Get as many opinions as you can cause as I understand it bearing a child is not out of the question with some of the valves on the market. I will be praying that you will come to whatever choice makes you feel comfortable in your heart.
 
THANK YOU everyone! This has helped a ton and has given me some really great things to think about! I have Pre op on thurs and looks like surgery will be Next week! It has been a rollercoaster of emotions in the past week and now the preparing for the next month has to start. My husband and I own a small family business so we have a ton to do in not enough days! So thank you for all the info!
 
Well the date is set...October 28th... Also my 36th birthday... Who gets a new valve on their birthday ;) this all has to be a sign...right? So after lots of reading and lots of questions ( thanks to that awesome list of questions) with my surgeon I will be getting a beautiful cow valve. Thank you everyone for all the help and great info!
 
Well the date is set...October 28th... Also my 36th birthday... Who gets a new valve on their birthday ;) this all has to be a sign...right? So after lots of reading and lots of questions ( thanks to that awesome list of questions) with my surgeon I will be getting a beautiful cow valve. Thank you everyone for all the help and great info!

Well Happy Birthday. It certainly will be on your remember. You're right not many people get to celebrate their Birthday and "vavlversary" on the same day. I think the cow sounds like a good choice especially since you want to have babies. I'm glad you dont have to wait long for your surgery.
 
Well "off you go, indeed!"

Like Lyn said, so glad that you do not have to wait much longer to get your new valve and new life underway. From that day forth, you will be celebrating the two biggest events of your life, so far....your birthday and valversary!

I will put you on the calendar and we will all wait with you!

Godspeed!
 
Carla, I imagine your valve will be the most expensive birthday present you ever receive!
You've really gone through alot, but hopefully the bovine valve will allow you to have a child, or two, or three.:smile2:
Best wishes!
 
Well the date is set...October 28th... Also my 36th birthday... Who gets a new valve on their birthday ;) this all has to be a sign...right? So after lots of reading and lots of questions ( thanks to that awesome list of questions) with my surgeon I will be getting a beautiful cow valve. Thank you everyone for all the help and great info!

So sorry to hear about your loss. To answer your question about birthdays, Me. I had my aortic valve replaced on my birthday this year too, and it was a cow valve too. I'm happy to hear you are getting tissue, it will make future pregnancies less of a risk. Good luck next week. I'll be waiting to hear the good news of how much better you feel and how it wasn't as bad as you thought. Your youth is your besggest advantage, and I'm sure you'll do great.:thumbup:
 
Carla, that is a very sad story. I'm sorry for your loss.

If you want children, you need to get a tissue valve. I don't want to sound like a naysayer, but I wouldn't count on that valve being replaced by catheter, as no one really knows how soon or how long this will come about. If it can be done that way for you in the future, great, but I wouldn't go into it at this time thinking it's a probability.

I think your biggest concern and deal-breaker right now is having children. If you want children, get the tissue valve and have your babies.

Wishing you all the very best for your surgery and future.
 
Best Wishes to you Carla from a fellow cow valver. I know that things are pretty crazy right now, but in another week you likely will be up and around with all this insanity behind you.

However, I must tell you that eating a hamburger will not be considered cannibalism (yikes) and that going past a newly moved field or lawn may cause you to pause for a minute (just kidding).

I will be thinking of you on the 28th. :)
 
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