Mechanical or Tissue/Pregnancy

[Shelba]

I was diagnosed with Severe Mitral Valve Regurgitation (caused by R. Fever) and mitral stenosis in 2001. I was told that I didn't need surgery until now, I just got the news on Jan. 2. It wasn't a shock though, because I was expecting it.

Here's the thing. I'm a 31 year old woman. I was told nearly two years ago to avoid pregnancy at all costs, that my heart would tolerate it. After many, many months of grieving the idea that I would never have a child, I came to terms that I would not carry a child. And came to embrace adoption. We were to start the adoption process this month, but when I went in for my 6 month checkup, my tests showed that my condition was deteriorating. So, to get a better idea of what is going on, this past Friday I had a cardiac catheterization which confirmed my doctor's prediction that heart surgery is in my immediate future.

Obviously, our adoption plans have been put on the back burner because of my upcoming surgery.

I met my surgeon for the first time on Friday, and he mentioned that my doctor told him that I am adopting. He wanted to know if I am doing so because I don't want to give birth or is it because of my heart condition. Then he told me that if I want to try pregnancy, I can. Instead of having a mechanical valve, that my cardiologist has strongly suggested I get, the surgeon said I could have a porcine valve, allowing me to go through a pregnancy.

I am floored. I have up on pregnancy awhile ago, and how I have this chance. And I have to make the decision on what I want to do. Go for the mechanical valve and have just one surgery/ plus a lifetime of coumadin and no pregnancy.
Or, porcine valve(I'm going to bring up bovine valves to him), try to get pregnant, and eventually have a second surgery.

I would appreciate any advice any of you can give me. I don't know what to do. I just don't know what to do.

Mechanical vs. porcine/bovine. Any of you had to have the second surgery to replace the animal valve with a mechanical one? Is the second surgery worse than the first? Anyone give birth with valve replacement? Anything, any of you can tell me.

I can't tell you how happy I am to have found this site. Finally people who have been through valve replacement! Yay!

I have yet to schedule my surgery, like I said, I just found out on Friday.

 

[fisher6476]

Welcome

Welcome

Shelba,
Welcome to this site. Others will be along soon to welcome you also and help get you settled in here! You have a choice that is a bit different from most of us, but I think you will find great help here. Sit back, relax and read as many posts as you can, ask as many questions as you can think of, and take heart that the right anwers will come your way. There are a WHOLE BUNCH of us us that will do our best to help you through. So glad you found this site.
Steve

 

[medtronic of borg]

I asure you that some of the lady on here that have had a replacement have children and will be along soon to let you in on a few things. I for one just wanted to welcome you to the group. This site is a good one!! And yes I have a mechanical aortic valve. Working great!! Coumadin in not anything more then a hassel (sp?) . I have a 15 second blood test every 30 days. The drive for me is the bummer. It is a long way to my hospital. Other hospitals laugh at me...not because of insurance or such...but because they don't feel comfortable handling a case such as mine.

So I hope you stick with us.

Medtronic of Borg aka Med

 

[Ross]

Shelba welcome to our home.

First things first. You do not want to go through this surgery anymore then you have to. Once is enough, but sometimes we are not afforded that luxury. With that being said, as long as you wish to try to conceive, mechanical should be placed out of the picture. I would recommend a Bovine tissue valve as they seem to last a very long time vs Porcine. The drawback with animal tissue valves is your age. The younger you are, the faster the valves calcify and require replacement.

There are no guarantees with ANY valve that your not going to have to have another surgery nor take Coumadin. Some tissue people still have to take Coumadin for a few months after surgery.

With each subsequent surgery, your risk of mortality increases. I'm just saying that with each surgery it is harder and harder to recover.

I'm giving you credit because I can place myself in your shoes and see the world the way you see it. You only have one life and you should be able to have children of your own, if you desire too. The question you need to ask yourself is, "Is having a child of my own worth risking my life for during another surgery?" Again, there are no guarantees that you won't have to have one anyway. It's a difficult decision, but you must be able to live with the choice you make.

Being that you haven't discussed this with a surgeon yet, lay all the cards out on the table when you do. He/She will be able to help you select what is best for you with the given circumstances.

Please stick around. Others will be along to help from the female angle of things.

 

[Neil R]

Shelba,

Welcome to the group. I am new here myself.

My aortic, replacement surgery is scheduled in about 7 hours!
I chose a bovine valve, but my situation is very much different from yours.
Never-the-less some thing you may want to consider:
There are no guarentees either for medication or additional surgeries.
The joy of children is something no-one should be forced to miss. My surgeon give a bovine valve an 80% probability of lasting 20 years. You are young enough that should a second surgery be necessary, your chances for sucess are good.
The choice of valve is a personal decision. Above all, be comfortable with your choice.

Good Luck,
Neil R

 

[Nancy]

Hi Shelba-

Welcome to the site. Wow! You've had a lot of life-changing things thrown at you from all directions. Talk about heavy-duty decisions.

Yes, yes you can have second surgeries and more. My husband has had 3, and others have had even more. It does become more difficult with each additional one because of scar tissue, adhesions and the body's ability to bounce back again and again. So if you consider having a tissue valve put in now, think about having a mechanical the second time around. Third surgeries start getting into the more risky zone.

There are women on the board that have been in your position, and I hope they'll be along soon to give you some insight. Your surgeon and OB/Gyn should be consulted as well. Get opinions from all the sources.

The more you know, the more informed decision you can make.

Wishing you all the best with your decisions.

 

[Karlynn]

Shelba,
Wecome!

I had one miscarriage and 2 full term pregnancies. The second full term pregnancy did in my health. I had Mitral Valve Prolapse and knew it going in to the pregnancies. It wasn't severe and I had no symptoms. Then along came my second child. Boom!

As Ross said, it is your decision and you should be able to have your own children if you want to. Here are some of my thoughts:

-I would question the doctors on what data there is on women successfully bearing children with a tissue valve replacement. Pregnancy is tough on the body, any body, and what would be the issues of pregnancy when dealing with a tissue valve?

-How long would you need to wait after replacement before you attempted a pregnancy?

-a tissue valve doesn't completely rule out having to be on coumadin. If you happen to become someone who has to deal with bouts of atrial fibrillation after replacement - you'll need to take coumadin and it's no-no during pregnancy.

-would the stress of pregnancy shorten the amount of time between your 1st and 2nd replacement? I'm sure you are already thinking that your number one concern is to be the healthiest mom you can be, whether it's to a bio baby or an adopted baby. I went through valve replacement surgery when my children were little and it was very hard emotionally for all of us. I had some issues over not being able to be "the Mom they deserved".

Before I had my own children, I was caught up in the desire to bear a child of my own. I thought that would hugely impact my life. After having 2 bio babies, I can honestly say that having actually carried them doesn't mean a whole lot in the grand scheme of things. It's the loving and caring for them after the birth that makes someone a true parent. My best friend has 2 adopted children. I know without a doubt that she is just as much a Mom as I am. And she got to do it without stretch marks!

I'm sorry that you have such a tough choice to make. But you seem like you are already weighing things very heavily and wisely. Best wishes to you and keep us posted.

Karlynn

 

[Creed3]

Hi Shelba!
Welcome to this wonderful site. My situation is different than yours. I am 35 years old. I have 2 children. 5 years and 2 years. My pregnancies contributed to my heart problem. I would have eventually had trouble as I became older, pregnancy just sped up the process. In a way it was truely a blessing is disguise. Anyway, the surgeons gave me a mechanical valve. They gave me a mechanical because of my age and to try not to have surgery again. I am on coumadin for life. The docs told me that I shouldn't think about having anymore children. They said that it isn't impossible, it is just a higher risk pregnancy. In my case there are two reasons. One is the coumadin. The coumadin can cause major birth defects early on in the pregnancy (when you don't even realize you are pregnant yet). I guess if you were trying to get pregnant, you may be able to take heparin shots twice a day. That way you would be off of coumadin if you were to become pregnant. You most likely would have to take the heparin shots throughout your entire pregnancy. I have known some women who had to take heparin shots during their pregnancy. Two, is that the docs never really knew what caused my problem to begin with. They think it was just a congenital weakness. If I were to get pregnant again and there is another congenital weakness, it could cause alot of problems. Then again, I may not have anymore weaknesses. My decision was a little easier than yours because I have two children already. I think you should definately talk to your cardio, your surgeon and your ob/gyn. Lay everything out on the table and see what they all have to say. Alot also depends on how you feel about having another surgery. I agree with Nancy, if you go with a tissue valve the first time, you should consider a mechanical the second time around. The more surgeries you have the harder it is on your body. Good luck with everything and please keep us informed on how things go. If you want to talk you can send me a private message.

Take Care!
Gail

 

[Harpoon]

Granted, I'm a guy so I don't know any better on this one as far as getting pregnant and carrying a child to term, however I've always thought adoption was a VERY nobel thing to do and it seems to me that getting pregnant is only a small part of what it is to be a mother...


But that's just me.



Oh, ummm.... My wife has a three year old son, he's not "mine" biologically but he is in every other sense of the word. After Erica and I have been married twelve months (this coming September) we can start the proceedings for me to adopt the kid which I fully intend on doing.

Maybe he's not genetically mine, but that never really mattered to me. He's my son and I love him dearly and I'm the only father he knows.

Adoption gives a family to achild that has none, that's gotta account for something and if havinga child of your own involves so many risks, the alternative (adoption) can't be THAT bad can it???

 

[Shelba]

Thank you for all of your thoughts, I'll take all that I can get.

When I woke up Friday morning, I believed with all my heart that I would get the mechanical valve. And I never considered that a bio child was a possiblity. Like I said, I laid to rest the child that I will never have a while ago. It was a rough road, but I made it through. Before I couldn't have discussed any of this without bawling, now, I can talk about it easily.

I've come to accept adoption, and even though I've yet to adopt, it has become part of who I am. Because of this, I suppose I could say that my decision has been made. Go mechanical.

But, I have to admit the idea of carrying a child inside of me is so tempting. I would love to have that experience. Even though I've come to terms with the idea of never having a child, I still can't help feeling jealous of pregnant women, knowing that I will never have that. But just like that, I have the opportunity. I have yet to allow myself to celebrate the idea openly, but inside I'm doing a jig. And I say, Go Bovine! Moo! When I see the cows on the side of road, I want to park my car, and kiss their slobbery faces.

But I don't know. I don't know. What I do know is that all of you are helping. It helps to hear your opinions, because while you may not have pregnancy on the brain, as I do, you have had to make decisions about which valve, and you have gone through heart surgery, or you love someone who has. You offer great insight, that I am in desperate need of.

If I had a child today, I would go mechanical. I'm sure of it. And that is something to consider.

I'm calling my OBGYN right now to talk to her, as well as our adoption agency.

And I am supposed to call my surgeon this week to further discuss all of this, so I appreciate all of the questions you have given me to ask him.

Oy, my head is spinning.

 

[Christian]

Shelba:

My wife is 30 and has moderate-to-severe mitral regurgitation. We went to four different doctors in the last six months seeking advice on babies: a heart valve specialist at the Cleveland Clinic, a general cardiologist here in Pittsburgh, a cardiologist here in Pittsburgh that specializes in taking women with valve problems through pregnancies, and a high risk obstetrician.

The result was unanimous: we could proceed with only a "slight" increase in risk. So we're going to give it a shot.

Of course, your own condition may be different, and I'm not a doctor, so please take what I say with a grain of salt. But it's food for thought. *edit* I didn't notice at first that you also had stenosis. I think stenosis creates additional risk.

If, for some reason, we'd have to go in for surgery, the Cleveland Clinic folks intend to repair the valve. If they can't, they were going to give her a Carpentier - Edwards Perimount Mitral Valve (bovine (cow) tissue). These valves have proven to be quite durable (we're told to expect 10-15 years) in young women. And you can have a baby with one of them. I'd ask about that valve as a potential option instead of a porcine valve. Check out this link:

http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/pericardialvalvestory.htm

I've read up a ton on this particular valve, and we decided that based on our situation, it would be our best option. All of our doctors agreed.

Again, this information was all tailored to my wife, who's been followed at Cleveland since 1998. But again, it may be food for thought.

We were also told to expect a repeat surgery with either a mechanical or a tissue valve -- 10-15 years for the tissue, and 25 years with the mechanical. Every time I post this point, I get a lot of questions about it, but I don't have any answers as to "why." I didn't bother asking, because it wasn't a "hot" issue at the time. My guess is that the "One Valve For Life" slogan doesn't apply if you're under a certain age.

I'm 31 myself, and I know how you feel and what you're going through. Drop me a line if you'd like to chat. [email protected].

 

[Ross]

And I say, Go Bovine! Moo! When I see the cows on the side of road, I want to park my car, and kiss their slobbery faces.

That's the spirit!

Write down every question that you can possibly think of to take with you to the surgeon. Also if possible, take someone with you so they can hear the answers too. Sometimes we go deaf and they pick up what we didn't.

 

[MelissaM]

Hi and welcome to the site!

Your head must be spinning. I am 30 years old and a bout of bacterial endocarditis trashed my mitral valve. Like you, I wanted to have biological children and saw that dream become much more challenging with the possibility of a mechanical or a porcine valve.

After much (much!) research and persistence, I decided to see Dr. Cosgrove at the Cleveland Clinic to attempt a repair of the mitral vavlve. This repair (if successful) would allow me to have one surgery and bear children naturally. Don't know if this is an option for you. . .but it is worth asking.

Melissa

 

[dwfreck]

Shelba,

Welcome! And, WOW, what an interesting and complex question you're facing!

I won't repeat what the others have said; they've all given good advice. However, here's something else to think about (as if you needed more): you aren't necessarily facing a choice between natural children and adopted children; you're really facing a choice of the timing of those two options as they relate to your heart's condition.

You may be able to do both: give birth to a biological child, then, some time later, adopt a child. A good friend of mine thought she would never get pregnant (for medical reasons very different from yours), and was in the process of adopting, when, SURPRISE!, she got pregnant. She put the adoption on hold, for obvious reasons, but didn't "cancel" it because she was a very high-risk pregnancy, and she realisticly doesn't expect another biological baby, but would like to raise more than one child. You may be able to do the same thing, depending on what your various doctors have to say about the stress of pregnancy and its effects on your heart.

Ultimately, though, your choice of replacement valve comes down to what feels right for you. Everyone here either has faced or is currently facing the same choice, and everyone has a different set of criteria to sift through. I'm likely having surgery some time in February, but I haven't set a date yet because I haven't made THE CHOICE yet (though I am very close).

With respect to your doctors' opinions, from my experience and the postings I've read on the forum, it seems to me that they will fall into two camps: the "avoid reoperation at all costs" camp and the "reoperation isn't a disaster" camp. It also seems to me that cardiologists are more often in the first camp, and cardio-thoracic surgeons are more often in the second camp. The same is true of many of the folks on this forum, the two primary examples being Ross and Nancy.

Hang in there and let us know how it goes.

 

[Andrea]

Shelba

Shelba

Sorry I emailed you before I saw this post. I think the most important thing is to take plenty of time to make your decision (if health allows).

I actually gave birth to my second and last child while I was considered 'severe' with my mytral. I had high risk docs and everything went smoothly. I had the valve job a year later.

You need to give your self time to think about this because you cant change your mind. There are good points about both paths. Decide which is best for you and your soul. Having your own baby is great, but so is giving a loving home to a baby who needs you. Either way, you end up with a child who loves you dearly

 

[Shelba]

Thank you for all of the great replies, I really appreciate them. Today, I am really leaning towards getting the mechanical valve. I talked to our adoption agency and they don't see any of this interfering with our adoption. It will obviously delay it for a couple of months, but we will be allowed to adopt. Provided my social worker and cardio approve, which I'm not too worried about.

I have a lot of friends dealing with infertility, a lot. And they are all living through weekly tests that scare the hell out me. I went through the whole grieving process already, and I've worked to accept adoption....if I had the bovine valve and experience infertility....I don't know if I want to deal with all of that again. Had I been given this choice when I first heard that I would never give birth, I wouldn't have had to think about it, I would go bovine, but now....I'm a different person.

And I'm really scared of that second operation. If I can avoid it, I'm thinking that I might want to. I worry that I'll come out of the operation and from then on out live in fear of the operation that I know is hanging out there.

Anyway, I could always change my mind. I still have to talk to my OBGYN this Friday, and my surgeon next week. I have a lot of questions.

Thank you!!!
Michele

 

[medtronic of borg]

food for thought

food for thought

We had raised three foster children untill the system found some parents. It is a wounderful way to first find out if you like being a parent...not everyone is. I had no Idea how much work a 10,11,12 year old would be. With me at home I was Mr. Mom. We wanted to adopt the two of the three but the load of three was going to be too much. The youghest one is now 17.

Med

 

[Shelba]

You're right, right, right. I don't know what I'm going to do. I'm waffling. I'm waffler.

 

[dwfreck]

Shelba,

I'm waffling too. One day it's, "no reoperation - give me the mechanical"; the next it's, "no coumadin - give me the Ross". Then the wind changes, and I'm on to a bovine. I think I'm just stalling...

As for the "load of three" that medtronic of borg talked about, my wife and I have definitely thought about that: we've got two now, and we're not willing to let ourselves be outnumbered!

As for infertility, just because your friends have that problem doesn't mean you will too. Your OB/GYN may be able to give you an idea if that will be an issue for you and your partner.

By the way, are your waffles Belgian, or regular? Do you do waffle cones as well?

 

[Shelba]

Well, Dale, my waffles are of the Le'go'of my Eggo variety.

I told my husband last night that I am assuming that I am infertile. Just assuming. I have nothing to base this on other than fear. I am seeing my OBGYN tomorrow, so I'm counting on her to suggest some tests.

I based yesterday's "choice" on fear. Fear of the second surgery, fear of being infertile, fear of giving birth even.

Today, I don't know what I'm going to do.

I called my husband yesterday, crying, and said, "I've made my choice. I'm going mechanical." He asked me, "Why are you crying? Don't you feel good about this choice?" "Yes" , I said, then started to bawl. I guess I really didnt feel too sure, huh?