Valve choice. No clue what to do, and I would like to hear your opinion!

[bw00]

Hi everyone,

I would like to hear your opinions. I posted once before but I will give a short update. I am a Dutch eighteen-year-old girl that is waiting for an aortic valve replacement. I recently got my test results back and my doctor decided that I will need surgery somewhere in March or April, which was disappointing since I hoped I could wait till summer since that would have been easier with school. I live an active live. I have not had my meeting with the surgeons yet, that will be somewhere in the next two weeks. My problem now is that I have to choose between a mechanical or biological valve, but every doctor seems to advice differently. I was first leaning towards a biological valve more, since you could still get pregnant with that, but then I heard that on younger people they tend to last less then 10 years. I am very passionate about school and about having a successful career so I think I would not want to have children before I turn 30. Saying that a biological valve would last 7 years on me, that would mean that I would need 2 open heart surgery’s before I have any children. Since a biological valve also has trouble with pregnancies that would also mean that after my first pregnancy I would immediately need a new valve as well. Basically that means 3 open heart surgeries all because I could possibly want one child in the future. That seems very stressful to me. If I would have been older it would have been different. But then there is the chance, that it will be possible that at the time I will need another replacement, the minimal invasive surgery is a possibility. Which would mean I would have less open heart surgeries, and then the choice is very different. My doctor says she can not promise anything, but she would not be surprised if within 15 years the minimal invasive surgery would apply on me. Now that makes me confused, because I feel like I am making a choice on something that is not certain. On the other hand I am afraid that I will regret it if I take a mechanical valve, because having children with that is possible but very risky. And after reading the risks, I don’t think I would be willing to risk my life to have a child.
Because of the above I feel like choosing for a mechanical valve more. Yes, I will need to live my life on blood thinners, but it would save me all these extra surgeries. There is always adoption etc. Plus some women do have children with a mechanical valve. With choosing a mechanical valve, I will save myself a life full of surgeries. I will choose for my own health, not for possible children.
I have the opinions of several doctors and they all advise something different, and the more information I find about it, the more complicated the choice seems to get. I am at a point where I just have no idea what to do and I am getting frustrated. Not only that I don’t know which valve to choose, also that I feel like at this point in my life my main concern should be whether to go out at night since I have a lecture or class early in the morning, you know. I feel like I am not able to make this decision at this point in my life, and I am stressing out over it. I don’t know whether I want children and I feel like I am too young and lack some life experience and knowledge to make this decision. Now I would like to hear your opinions. I will not base my decision on your opinions, I am just interested to hear what you have to say! Sorry for the long story, and sorry for any English mistakes. English is not my first language. I wish you all a good day / night!

X Berit ( I hope I posted this in the right thread, if not sorry!)

 

[Superbob]

Berit -- Your English is fine, you have posted in the right thread, and you will receive a lot of opinions here (which will probably be as varied as those you have received from the doctors.)

I thought I had a tough valve choice as a male when I was age 63 (9 years ago).

That was nothing compared to being a 18-year-old female faced with the mechanical-or-tissue choice.

You obviously are an intelligent person who has done a lot of research on these issues.

I think that with good cause you have distilled the question to one of how important child-bearing is as a priority in your life. I think you are wise to think about adoption as an option down the road, too.

For longevity of valve at your age, I think the research clearly says mechanical. However, a tissue valve is safer for pregnancy and child birth. You already know these things.

I don't really feel qualified to offer you an outright opinion. So much depends on your highest priorities.

As I concluded when I was making my own decision, life would be simpler for us heart buddies if we had a crystal ball so we would know how type of valve might comport with what we are doing 10, 15, or 20 years down the road. The best I can do is to suggest making a written list of the pros and cons of each valve choice after doing all the research you can. And then make your decision in confidence that you will have a full life ahead.

All blessings to you!

 

[Lynlw]

Hi I don't really have an opinion to offer, both choices have pluses and minuses, I know it is very hard, and only you can decide what is important for you,
Have you checked out any of the forums for Adults w/ Cogenital Heart defects? IMO that would be a good place to find out about other people who had valves at a young age and some have had children. and what choices they made and why. http://www.achaheart.org/ a US site with members from all over or http://www.thesf.org.uk/ UK org *** is somewhat easier for guys your age, since pregnancy isnt an issue, .altho for alot of young guys they have trouble deciding too.

I do want to add, ALMOST everyone would reccomend IF you think you MAY want to carry your own child then get a tissue valve. Yes there are people who have been lucky and had healthy babies and didnt have any problems, butt many people including several members here, ran into alot of problems during their pregnancy and right after they had their baby.

YES tissue valves last shorter times in people in their 20s, but I wouldnt count on needing it replaced by the time you are 30, there is a chance it last 7 years it also may last longer or shorter.. I also wouldnt agree that "Since a biological valve also has trouble with pregnancies that would also mean that after my first pregnancy I would immediately need a new valve as well" Yes they usually don't las as long as someone who didnt have a child, but a few people have had 2 or more children w/ their tissue valve and others didn't need their valve replaced for a few years after their baby. They usually arent an emergency surgery like could happen w/ a mechanical valve clotting.

But as far as needing to have the valve replaced right afer having the child, the only people I know who have had to have their valve replaced right after (some times hours) having their baby where people w/ mechanical valves http://www.valvereplacement.org/for...Willow-s-Pregnancy-after-MVR&highlight=willow she had 2 pregancy w/ 2 different mech valves and 2 different anticoag plans thru out she had problems but has 2 healthy children altho they were a little early
and http://www.valvereplacement.org/for...nd-Valves-Women-Please-Read!&highlight=willow KMB got an ON-X valve it is a newer mech valve and she got it planning on having babies but had problems

the label on Lovenox still says .7 Pregnant Women with Mechanical Prosthetic Heart Valves
The use of Lovenox for thromboprophylaxis in pregnant women with mechanical prosthetic heart valves has not been adequately studied. In a clinical study of pregnant women with mechanical prosthetic heart valves given enoxaparin (1 mg/kg twice daily) to reduce the risk of thromboembolism, 2 of 8 women developed clots resulting in blockage of the valve and leading to maternal and fetal death. Although a causal relationship has not been established these deaths may have been due to therapeutic failure or inadequate anticoagulation. No patients in the heparin/warfarin group (0 of 4 women) died. There also have been isolated postmarketing reports of valve thrombosis in pregnant women with mechanical prosthetic heart valves while receiving enoxaparin for thromboprophylaxis. Women with mechanical prosthetic heart valves may be at higher risk for thromboembolism during pregnancy, and, when pregnant, have a higher rate of fetal loss from stillbirth, spontaneous abortion and premature delivery. Therefore, frequent monitoring of peak and trough anti-Factor Xa levels, and adjusting of dosage may be needed [see Use in Specific Populations (8.6)].

The other thing is IF you want to get pregnant with a mech valve and Coumadin, you really should plan and have your doctors work with you. One of the problems w/ Coumadin in the first trimester, is it can cause face deformaties, so they may put you on some other anticoagulant for a while

to be fair there are people who had good pregnancy , http://www.valvereplacement.org/for...81;-EXCITING-NEWS!!-Orangebrittainy-🎉


at this day and age there ARE risk BUT IF you chose a Mechanical valve now, who knows "maybe" by the time you want a baby, there will be drugs that are safer for both the Mom and Baby.

 

[mina]

Berit, it's an impossible choice for a young woman. I was fairly young, too, when I had to choose, and I didn't have children. I also had no time to prepare or consider in advance. I landed in the hospital never before having been told I might need surgery one day. I agonized and agonized. I even resorted to picking options from a hat (which didn't work, by the way). I was fortunate to have a patient surgeon, he told me I could pick as late as while being wheeled to the operating room. The right choice finally did come to me, the night before surgery. The right choice for you will come to you, too.

I know you said you were fearful about the risks of having a mechanical valve and being pregnant. Yes, there are serious, life threatening risks. But women with mechanical valves in the aortic position, especially if the valve is one of the fancy newish pyrolytic carbon valves (like On-X), can have successful, relatively safe pregnancies if carefully managed by good doctors. A couple of women on this site have recently mentioned their successful pregnancies with mechanical aortic valves. Again, it's not without risk, but one can have a positive outcome. There's not a ton of information out there, but there is a study or two my cardiologist found for me, and my surgeon follows the European research closely. They both discussed different options for pregnancy with me (heparin through the whole pregnancy, heparin for the first 12 weeks and then back to warfarin, or plavix and aspirin through most of the pregnancy). There are options, and I am fortunate to have an excellent team who discussed them with me.

My surgeon put it this way. He told me that a pregnancy with a mechanical aortic valve was high risk, but if I waited until my mid-thirties to have children I'd be facing a high risk pregnancy anyway, simply because of my age. He also said, though, that although the risks go up with each surgery, if you have a skilled surgeon the risks are lower than for the average person, especially if those reops are done while one is young. Someone who is used to doing multiple reops, such as a pediatric surgeon who also does adults, knows techniques for dealing with the scar tissue that regular heart surgeons may not, my surgeon said. I'm not saying my surgeon's logic is for everyone, but it made sense to me.

My surgeon never made a recommendation, he just patiently answered all my questions and let me choose. I made the choice that was right for me, and I have been happy with it. I know you will have the same good fortune, too. Unfortunately, these types of reassuring words don't help ease the difficulty of your decision.

[PS - edited to add, I think most, if not all, the women on this site who have had difficulties with mechanical valves had them in either the mitral position or both the mitral and aortic positions. Again, I'm not saying having a mechanical valve in the aortic position and being pregnant is without risk, but according to my doctors there is less risk than if the valve were in the mitral position or if there were two mechanical valves.]

 

[Duffey]

Have you discussed this with your parents, siblings and friends? You might start there.

 

[ottagal]

Berit,

Just wanted to wish you all the best with your decision. It is a difficult one! Other members have provided you with good input and I really have nothing to add. I hope once you make your decision, you find peace with it and move forward.
Keep us posted!

 

[Agian]

What a difficult choice for someone so young. I'd contact an experienced obstetrician and ask about pregnancy on Warfarin. This information might make your decision a little easier.

 

[Lynlw]

I wanted to mention this study, since you havent had your valve replaced yet, maybe your doctor could contact the doctors who wrote it. (BTW I dont know if you discussed the possibility for a repair or not, if not i would ask about it) anyway here is about a small (40 patients) pilot they did w/ young Female who wanted to have children but needed their Aortic valve replaced,
They believe even tho there ARE risk, in a certain group of patients, IF they needed a lower dose of Coumadin to get into range, it MIGHT be possible to have a safe pregnancy. pretty much they were put on a trial of Coumadin before their valve surgery http://content.onlinejacc.org/article.aspx?articleid=1201206#Results to see how much is needed to reach the recomended INR and depending how it turned out they had a Algorithm to what kind of valve was reccomended tissue or mechanical if they wanted to have children, there is a flowchart explaining it.

Do you go to a Cardiologist who specialises in Adults w/ Congenital Heart Defects, or Congenital heart defects? If Not is there any in the area? They would be most up to date on pregnancy w/ he various CHDs and valves etc.

 

[Freddie]

Hard decision to make granted, but I think you've answered your own question without realizing it:

Hi everyone,
.........
Because of the above I feel like choosing for a mechanical valve more. Yes, I will need to live my life on blood thinners, but it would save me all these extra surgeries. There is always adoption etc. Plus some women do have children with a mechanical valve. With choosing a mechanical valve, I will save myself a life full of surgeries. I will choose for my own health, not for possible children.

 

[pellicle]

just recently a 25 year old ladie jouned here who had a mechanical valve and who said that she had had children with that valve and while on warfarin without complications

 

[dornole]

I feel like I am making a choice on something that is not certain. True. There's no certainty about any of it. You've done a great job of looking for options though.

I feel like at this point in my life my main concern should be whether to go out at night since I have a lecture or class early in the morning, True also. Not ideal but you've got the situation you've got.

I feel like I am not able to make this decision at this point in my life, Not sure I agree. You have the option to give this decision (by which I think might I want a pregnancy) to someone else. But I am sensing you want this for yourself to be the one who decides. Either way, I think you're someone who WILL BE all right. Not to say that everything will turn out the way you plan. But that you will adjust to circumstances as they happen and build a beautiful life - with or without children, who may be adopted or via surrogate or born from your own body . . . with or without the career you first imagined on the timeline you imagined, or whatever else may occur. There is no wrong way to build loving relationships and a productive and worthy life. If logic fails try your intuition - what feels heavy or light? I think you will decide and go on boldly from there.

 

[Lynlw]

just recently a 25 year old ladie jouned here who had a mechanical valve and who said that she had had children with that valve and while on warfarin without complications

Was that the lady who was asking about a GI Bleed? Mom2 something I dont remember?

 

[AZ Don]

I have the opinions of several doctors and they all advise something different, and the more information I find about it, the more complicated the choice seems to get. I am at a point where I just have no idea what to do and I am getting frustrated. Not only that I don’t know which valve to choose, also that I feel like at this point in my life my main concern should be whether to go out at night since I have a lecture or class early in the morning, you know. I feel like I am not able to make this decision at this point in my life, and I am stressing out over it. I don’t know whether I want children and I feel like I am too young and lack some life experience and knowledge to make this decision.

I've found that if you ask enough Dr's you will get opinions supporting just about anything that you want. I think there is a point of diminishing returns with additional opinions. I understand the frustration with the overload of information. It gets to a point where it feels overwhelming. I suggest to focus on what are the key points for you. You don't have to research this all yourself. You can ask your Dr's these questions, and even ask them what the latest research says. They should have access to research that you do not.

I'm sorry that you have this issue, and a tougher decision than most of us here, but don't forget that you have a condition that can be fixed with a prognosis for a long life. Regardless of age I don't think anyone is ever truly prepared for such a decision. The thought that you have put into this process evident in your post shows that you are well qualified to make this decision, ready or not.

Because of the above I feel like choosing for a mechanical valve more. Yes, I will need to live my life on blood thinners, but it would save me all these extra surgeries. There is always adoption etc. Plus some women do have children with a mechanical valve. With choosing a mechanical valve, I will save myself a life full of surgeries. I will choose for my own health, not for possible children.

I think this is a very reasonable choice. I'll suggest another thought: you could "kick the can down the road". For example get a tissue valve now and perhaps next time a mechanical. Rather than a lifetime of surgeries, perhaps only 2. I'm not recommending this, just pointing out you don't necessarily have to face a lifetime of surgeries even with a tissue valve. Whatever you choose, don't second guess it once it is done. You are carefully considering your alternatives and making the best choice that you can based on the information that you have. With hindsight there will always be more information that would influence your decision if it was available to you now - but it is not.

 

[pellicle]

Was that the lady who was asking about a GI Bleed? Mom2 something I dont remember?

no, her nic was something different. She was from somewhere in Asia

PS ... Ahh found it
http://www.valvereplacement.org/for...tions-from-a-new-member-)&p=549413#post549413

I had mis remembered, she switched away from warfarin during pregnancy. Anyway read her post ;-)

 

[Paleowoman]

But then there is the chance, that it will be possible that at the time I will need another replacement, the minimal invasive surgery is a possibility. Which would mean I would have less open heart surgeries, and then the choice is very different.

Hi Berit,

I couldn't advise what valve to choose as it's a very individual choice as others have said. I'm writing because you mention "minimal invasive surgery" as being "less open heart". I think you must mean the transcatherter method which is in developeent where they thread a valve through an artery and up into the heart - this is very new and only used, so far, for people who cannot undergo open heart surgery. "Minimally invasive surgery" is a bit of a misleading term I'm afraid. "Minimally invasive surgery" is still open heart surgery, there's really not much "minimal" about it, but it does mean that the incision is a bit smaller than the traditional incision. I just had "minimally invasive surgery" and the sternotomy cut is 10 cms instead of 14 cms (I posted a photo of my incision here: http://www.valvereplacement.org/for...463-Second-post-op-report&p=548240#post548240). My heart was still stopped and cut etc and I was still on the heart lung machine. Because the sternum is not cut the full length the time of healing of the sternum, is, in theory, shorter………

I hope you get some good advice from your cardiologist and surgeon.


Your English is very good ! I'm half Dutch, my mother was from Holland and I have loads of relatives there, but I'm afraid I can't speak much…..tot ziens !

 

[ManiSham]

Hi
I cannot advice you in your valve selection but I can share my story & hope it helps
I got a AVR (mechanical) at ,19.Doctors did not give me choice in the type of valve since I had severe Endocarditis & a VSD so they didn't want me to go for second surgery in the future I suppose. I had a baby when Iwas 25 but we found out I was pregnant within 10 days (through a hcg blood test) so I was properly managed from the very beginning. I switched from warfarin to innohep injections daily (my husband was taught to give it at home). At 38 weeks I had my baby through a c- section, I was in hospital for five days dur ing the delivery to ensure that everything was in place.

I didn't have any complications during or after my pregnancy. What I feel is a properly managed pregnancy with a mechanical is not impossible or overly risky. Having faith in God also helped me a lot

My daughter is 3 years now without a problem. Taking warfarin is also not a big issue I get it checked once a month,that's it. I go to the gym as well, I'm 28 now so things have been pretty ok for me.

 

[Lynlw]

no, her nic was something different. She was from somewhere in Asia

PS ... Ahh found it
http://www.valvereplacement.org/for...tions-from-a-new-member-)&p=549413#post549413

I had mis remembered, she switched away from warfarin during pregnancy. Anyway read her post ;-)

Yes I had read her post, I think it was in one of Berits other threads. I'm very glad she was able to do so well. I know Innohep is pretty much one of the only anticoagulants that is safe for both Mother and baby, almost every other choice if it is safe for the baby, its risky for the mother, and what is safest for the Mother is riskier for the baby. I think if im remembering right, you need to be close to a hospital that can do the testing quickly. I dont believe they use it in the US but since Berits isnt here that wouldnt matter.

I was just confused since you said children and the only person i remember recently who had more than one pregnancy and children was the Person who started the GI thread its mom2angels but she had some problems.

 

[bw00]

Hi everyone, thank you so much for all your responses! I am getting a bit emotional here reading all of your responses haha, they mean a lot to me, and reading other people’s opinions really helps me!
To reply to some of your comments:
- I have been talking to friends and family to hear their opinions. But outside of my parents, no one really knows a lot about heart diseases. Which also makes it refreshing to hear their opinions sometimes.
- I do go to a cardiologist that specializes in Congenital heart defects. I go to the only team of cardiologists and surgeons that specialize in this in the Netherlands, so that should help!
- Thank you for all the links to other people’s stories and studies and websites, I will read through them carefully!
- Kick the can down the road: great expression that I had never heard before! Yes this is something I am considering. For now choose the biological valve and see from there on. This something I should think about more.
- To Paleogirl. You are right! I did mean the transcatherter method. In my quick translation I assumed the minimal invasive surgery was the same thing, sorry about that. Your Dutch is great haha! I read through your threads after your surgery btw, hope the rest of your recovery will be good!
Thank you for all of your responses again!
X Berit

 

[markymark70]

Hallo Berit,
Heb je met je cardioloog overlegt of je klep te repareren is?
Het maakt ook uit waar je geopereerd wilt worden.
Ben zelf in Nieuwegein geweest, top ziekenhuis.
Je ziet ook vaak dat iemand met een biologische klep , bloedverdunners moet gebruiken.
Door de operatie kun je achteraf ritme storingen krijgen waardoor je als nog bloedverdunners moet gebruiken.
Laat je adviseren door een goede cardioloog/chirurg .
Op jouw leeftijd is zo'n operatie nog goed te doen, maar ik zou er zelf nooit voor kiezen om het nog 2 of 3 keer te doen.
Heb zelf 2 kinderen en maak me zorgen of ik er over 10 jaar nog voor hun ben.
Zou persoonlijk geen kinderen hebben gewild,als ik geweten had dat ik een hart probleem had.
Sterkte met je keuze .
Mvgr mark hendrikx

 

[tom in MO]

Berit,

I too heard your answer in your first post. I chose mechanical because I'd had past surgeries and did not want another if I can avoid it.

I agree that you can get too much information. It becomes confusing and hurts both the head and the "heart." If you pray or meditate, try using it to help you find your path. It helped me. It helped me focus on what is important to me now and how my choice will effect those things. Then the decision made itself.

Take comfort in the knowledge that if the decision is difficult, both paths have equal merit...so you cannot really make a poor choice.