Recently told I need valve replacement but may not be able to take warfarin

[Zara0006]

Hi everyone,

I am a 35 year old female with BCV, and have been told the valve requires replacement soon. I seem to be in the minority with my age and gender, so finding it really difficult to decide on which valve. I’ve not had children yet and was advised that a mechanical valve is not ideal, due to being unable to take warfarin in pregancy, but I also don’t want to have multiple operations.

Any advice would be much appreciated!

 

[pellicle]

Hi

well firstly there are two types of prosthetic valve:

1. Bio-prosthetic
2. mechanical prosthetic

type 2 is a dead certainty for needing warfarin.

Warfarin management around pregnancy is possible but it needs to be managed. There are some threads here where women have discussed this.

Eg
https://www.valvereplacement.org/threads/mechanical-valve-and-pregnant.866326/#post-866326

https://www.valvereplacement.org/threads/aortic-valve-replacement-03-2016.888682/post-918474
https://www.valvereplacement.org/threads/pregnant-women-on-act.28233/

https://www.valvereplacement.org/threads/desperately-need-advice-on-tissue-or-mechanical.885461/
as well there is this literature.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9803450/
I hope this helps somewhat

 

[Zara0006]

He Pellicle,

Thank you so much, that is really helpful and I will have a look through those!
Yes sorry I meant bioprosthetic, have edited my post

 

[pellicle]

Yes sorry I meant bioprosthetic

and was advised that a bioprosthetic valve is not ideal, due to being unable to take warfarin in pregancy,

Actually I think you meant mechanical prosthetic. A bioprosthetic (type 1 above) is usually what is recommended to ladies, because it does not usually require warfarin. However it does require reoperation at your age between 10 & 20 years later. Mechanical is the type that is more durable but requires warfarin

HTH

 

[Zara0006]

Yes that’s it thank you! The cardiologist also mentioned some people go for the tissue valve initially and then mechanical one later on, but I’m not sure I want to go through this surgery again!

I wonder if anyone has had the minimally invasive surgery recently? I was leaning towards this due to a shorter recovery period but need to discuss it with the surgeon in a few weeks.

 

[Lisa2]

The cardiologist also mentioned some people go for the tissue valve initially and then mechanical one later on, but I’m not sure I want to go through this surgery again!

Hi, Zara. Welcome. ^ This is the approach that my cardiologist and surgeon recommended for my first AVR at age 31 in 2004.

I met my husband in my 20s, got married at 30, and was not yet a mom when faced with the dilemma of valve selection. We went with a homograft (human donor valve) and it served me well for 13 years. But only 13 years. And the kicker is that I didn’t birth any babies. I wanted children and it just didn’t work out. I have a stepson and grandchildren that i love dearly, but no babies that I birthed. I am fulfilled.

My second AVR was six years ago. I was adamant that I wanted a mechanical valve going into the 2nd surgery because I didn’t want to have any more surgeries. That did not happen. They implanted a bioprosthesis. Going into that surgery, I had no idea that there was any remote possibility that I wouldn’t receive a mechanical valve. This is an unusual scenario. I’m simply sharing because it can happen to others if it happened to me.

I also had a very hard time with the second surgery and recovery. I had cardiac tamponade two days after the surgery and had to go back into the OR. I suppose that means I’ve technically had open heart surgery three times (never thought of it this way until now). The ‘event’ happened shortly after the nurse practitioner pulled the pacing wires. Thank God my husband was with me. He recognized that something was not right and ran out of my room to get help. Next thing you know they were rushing me down the hall and back into the OR….the whole was surreal and something like you see in a movie or on t.v.

Luckily I only spent a week in the hospital but recovery was much slower that 2nd time around. I didn’t bounce back at 44 as quickly as I did at 31. Now, at age 50, I’m on the countdown for the 3rd AVR. My former cardiologist of 20+ years is concerned about the worsening of the stenosis ( moderate) to the bioprosthesis. I had an echo at the end of April. He retired in July but gave me firm instructions to have a repeat echo at the beginning of the year. It looks like my timeline is moving up since he wants me to have another echo in less than 12 months. I do regret not getting a mechanical valve 19 years ago.

Zara, I wish you peace with whatever you decide. It is not an easy decision. You may consider adoption, fostering, or volunteering with a children’s organization as an alternative to childbirth. Just food for thought because we can’t predict what the future holds for us.

 

[dornole]

Hi Zara. In my case I was already pregnant (with twins) at age 34 when my mitral stenosis was discovered due to the cardiac demands of the pregnancy. Emergency c section at 27 weeks, my son and I both coded during the procedure and the first 2 years sucked but ultimately great outcome twins are 21 and in college now. I had a valve repair via balloon after I stabilized from the delivery and that has worked well too.

I was shocked back then to be told I was a “geriatric pregnancy” at age 34. Def whatever valve you get, I’d seek to be followed by a perinatologist rather than a regular ob gyn should you decide to get pregnant. Between your age and the valve that would be prudent I think. I remember from the threads pellicle linked that people have given birth with mech valves. You could could also book a consult with a perinatologist now as you are making your decision to better understand your risks with either choice.

The one thing I def don’t recommend is getting pregnant with a bad valve that doesn’t work. it’s shocking to have to deal with this stuff at age 35 but it happens, you’re not alone.

 

[Zara0006]

Hi, Zara. Welcome. ^ This is the approach that my cardiologist and surgeon recommended for my first AVR at age 31 in 2004.

I met my husband in my 20s, got married at 30, and was not yet a mom when faced with the dilemma of valve selection. We went with a homograft (human donor valve) and it served me well for 13 years. But only 13 years. And the kicker is that I didn’t birth any babies. I wanted children and it just didn’t work out. I have a stepson and grandchildren that i love dearly, but no babies that I birthed. I am fulfilled.

My second AVR was six years ago. I was adamant that I wanted a mechanical valve going into the 2nd surgery because I didn’t want to have any more surgeries. That did not happen. They implanted a bioprosthesis. Going into that surgery, I had no idea that there was any remote possibility that I wouldn’t receive a mechanical valve. This is an unusual scenario. I’m simply sharing because it can happen to others if it happened to me.

I also had a very hard time with the second surgery and recovery. I had cardiac tamponade two days after the surgery and had to go back into the OR. I suppose that means I’ve technically had open heart surgery three times (never thought of it this way until now). The ‘event’ happened shortly after the nurse practitioner pulled the pacing wires. Thank God my husband was with me. He recognized that something was not right and ran out of my room to get help. Next thing you know they were rushing me down the hall and back into the OR….the whole was surreal and something like you see in a movie or on t.v.

Luckily I only spent a week in the hospital but recovery was much slower that 2nd time around. I didn’t bounce back at 44 as quickly as I did at 31. Now, at age 50, I’m on the countdown for the 3rd AVR. My former cardiologist of 20+ years is concerned about the worsening of the stenosis ( moderate) to the bioprosthesis. I had an echo at the end of April. He retired in July but gave me firm instructions to have a repeat echo at the beginning of the year. It looks like my timeline is moving up since he wants me to have another echo in less than 12 months. I do regret not getting a mechanical valve 19 years ago.

Zara, I wish you peace with whatever you decide. It is not an easy decision. You may consider adoption, fostering, or volunteering with a children’s organization as an alternative to childbirth. Just food for thought because we can’t predict what the future holds for us.

Hi Lisa, thanks for sharing your story, it is comforting to hear from those who have been in a similar position.

I am definitely considering the mechanical option in order to avoid another surgery, I’ve had a look at the threads Pellicle suggested which have given me some hope! Plus I wouldn’t rule out adoption if that didn’t work out, so it’s something to think about.

I’m so sorry that having a child didn’t work out for you, I imagine it would’ve been difficult after you had made the decision to go with a bioprosthetic valve, but wishing you all the best for your next surgery, hopefully you’ll bounce back and it‘ll be the final one.

 

[Zara0006]

The one thing I def don’t recommend is getting pregnant with a bad valve that doesn’t work. it’s shocking to have to deal with this stuff at age 35 but it happens, you’re not alone

Thanks so much, it’s definitely nice to know I’m not alone! I’ll also consider speaking to a perinatologist, thank you! It’s a lot to process as I wasn’t aware that mechanical valves require warfarin until the cardiologist told me on the phone that I’d need the replacement, and also mentioned that you can’t be pregnant on warfarin.

I am having a CT angiogram next week, so I guess I’ll have more information after that about how soon I need the operation.

 

[V__]

I wonder if anyone has had the minimally invasive surgery recently? I was leaning towards this due to a shorter recovery period but need to discuss it with the surgeon in a few weeks.

I guess it depends on how "recent" you'd like it to be. I had one 11 months ago, and it was for a different valve.

FWIW, my understanding is that indeed the recovery time is faster with the minimally invasive surgery. The breastbone is either not cut, or only partially cut. And the bone takes a long time (~10 weeks) to heal. The soft tissues are recovering faster than this.

However, I think it's much more important that your surgeon is skilled in whatever approach they end up using. So if somebody always does OHS, I would not want want them to suddenly use a minimally invasive surgery on me. Everything takes time to learn, including the surgery tools and techniques. And they are different for the OHS and the minimally invasive type. It's not a simple switch.

Similarly, if somebody is always doing the minimally invasive surgery, I would not want them to use OHS.

You may want to ask the surgeon about what they use, success rate, and how often they do this exact surgery type. The valve surgery is sort of a "sub-specialty", it seems. The results tend to be better if the surgeon is doing the same surgery type more often.

 

[mina]

Hi, Zara0006, and welcome! Pellicle helpfully posted most or all of the threads to which I've contributed on this over the years - I had two successful pregnancies on a mechanical valve after having an unexpected emergency AVR at 32. If you have questions after reading the threads, don't hesitate to ask. Best wishes and good luck!

 

[Chuck C]

Yes that’s it thank you! The cardiologist also mentioned some people go for the tissue valve initially and then mechanical one later on, but I’m not sure I want to go through this surgery again!

Hi Zara.

I think that planning to go tissue on the first procedure and then mechanical on #2 is not a bad plan, if you desire to have children. You will still be young for #2 and most young people do fine on #2, although it is a little higher risk, due to scar tissue. Going mechanical for #2 would probably mean that this would be your last. The statistics would suggest that you would probably need this reop at about age 43 to 47.

But, as Lisa's story suggests, sometimes planning for 2 leads to 3 surgeries, with unforseen complications or events, such as endocarditis or the discovery of a new aneurysm years later. Of course, planning for 1 surgery, in going mechanical, you still could face these same events down road, which lead to another procedure. But, at least that way, you plan for 1 surgery, and if some unforseen event happens down road, perhaps your 2nd will be your last. So, there is the argument to plan for as few procedures as possible, because life does throw us curveballs and it is not uncommon for people to end up with one more surgery than they planned.

Not an easy choice and desiring to have children does complicate things.

I wonder if anyone has had the minimally invasive surgery recently? I was leaning towards this due to a shorter recovery period but need to discuss it with the surgeon in a few weeks.

Yes, I had a mini-sternotomy a couple years back, in which only the top 3.5 inches of my sternum was cut, instead of the full sternotomy. Quicker recovery, but in the big picture, I'm not sure getting back to things a few weeks earlier is worth the trade off. Many here will point out that having the full sternotomy gives the surgeon better access in case there is a complication, and I think that there is merit to that argument. If I had to do it over again, personally I'm not sure that I would advocate for a mini again, although mine went very well.

I wouldn’t rule out adoption if that didn’t work out, so it’s something to think about.

My wife had complications after her third pregnancy, which left her unable to have any more children. We wanted one more and so we adopted. It was a great decision for us and would be an option for you if you choose mechanical and decide to avoid the complications of pregnancy while on warfarin.

Best of luck with your decision.

 

[carolinemc]

Hi everyone,

I am a 35 year old female with BCV, and have been told the valve requires replacement soon. I seem to be in the minority with my age and gender, so finding it really difficult to decide on which valve. I’ve not had children yet and was advised that a mechanical valve is not ideal, due to being unable to take warfarin in pregancy, but I also don’t want to have multiple operations.

Any advice would be much appreciated!

Warfarin can cause Birth Defects, so Mechanical valves required Warfarin is not advisable to a young person who looks to have children. I was 36, single and no kids and did not want kids. So, St. Jude's valve was my route to take.

 

[tommyboy14]

Hi Zara,

I can only share my story: I had first AVR with tissue valve at 34. Then 8 years later (last may), I had a mechanical put in.

I think that you need to be aware that there some side effects and risks of repeated surgeries that are not mortality, so are not necessarily played up by the doctors, but are still there. In my own case, the drugs they put me on while in hospital stayed in my system for a very long time (I am thinking must have been almost 12 month). The first time around It took me around 4 months to fully bounce back. This time around it was more like 12. I feel like mentally I am not quite as sharp as before, but perhaps this is just my own impression (I havent taken any tests to prove/verify this). Anyways, this is something I would like to keep in mind.

Having said that, if you want to have kids, that is something you need to discuss with the doctors. In Germany, people were having kids by switching to Heparin injections for part of the pregnancy. However, Germany is also the country that has pushed self-management as the optimal solution to warfarin management, and this is pretty much the standard there. So it isnt surprising that the medical system there is more ready and comfortable to give people Heparin injections to adminster at home during pregnancy.

So I the right move in your decision is to get all the information from your doctors whether the German approach would be feasible, what they think risks to Baby are and so forth. This will inherently make your decision more complex and you may decide that the Bio valve is the one for you, but it is way better to have all this information before the surgery than after.

Best of luck with your choice and your surgery

Tommy

 

[Varago33]

Hi everyone,

I am a 35 year old female with BCV, and have been told the valve requires replacement soon. I seem to be in the minority with my age and gender, so finding it really difficult to decide on which valve. I’ve not had children yet and was advised that a mechanical valve is not ideal, due to being unable to take warfarin in pregancy, but I also don’t want to have multiple operations.

Any advice would be much appreciated!

I would get the mechanical valve because of your age. I have the St Jude** mechanical valve that will out last the soft valve by a long time. There is a lot of info on this.

This is your choice, dont let ANYONE talk you into something you dont want.

With the soft valve you will probably need it replaced at some point maybe a few times.
With mechanical value you will have pleasure of listing to the CLICK CLICK CLICK and have a hard time getting to sleep for a few months, so will your bed mate

The most PAINFULL thing in my life was at home after the operation. I was in the most pain I have EVER felt. I would sit on the couch and cry, I had not cried for many years, think pre teens. At one point I swore to myself I would NEVER EVER do it again. You can live with taking pills. This is something that will affect you the rest of your life.

GET OTHER OPTIONS

When I was young my GP NEVER told me about the heart murmur. At Army basic training the doc said I had a murmur but nothing to worry about. Then when my GP retired, the new one told I had a heart murmur and it needed action now. I saw a new cardiologist the next week and he said "let me know the soonest you can check in and the next week I was on the table.

I missed two things about taking warfarin are the INR testing once a month, its just a finger prick and when ever you are in the hospital you MUST let them know + any military service.

** insertion date 2008 15 years ago.

 

[pellicle]

I missed two things about taking warfarin are the INR testing once a month, its just a finger prick and when ever you are in the hospital you MUST let them know + any military service

For safety test weekly, a lot can happen in a month

 

[3mm]

I was adamant that I wanted a mechanical valve going into the 2nd surgery because I didn’t want to have any more surgeries. That did not happen. They implanted a bioprosthesis.

Lisa2 - I am very sorry that you did not get the valve you wanted in your surgery. Why did the surgeon not give you a mechanical valve?
Thanks for educating me!

 

[Varago33]

Hi, Zara. Welcome. ^ This is the approach that my cardiologist and surgeon recommended for my first AVR at age 31 in 2004.

I met my husband in my 20s, got married at 30, and was not yet a mom when faced with the dilemma of valve selection. We went with a homograft (human donor valve) and it served me well for 13 years. But only 13 years. And the kicker is that I didn’t birth any babies. I wanted children and it just didn’t work out. I have a stepson and grandchildren that i love dearly, but no babies that I birthed. I am fulfilled.

My second AVR was six years ago. I was adamant that I wanted a mechanical valve going into the 2nd surgery because I didn’t want to have any more surgeries. That did not happen. They implanted a bioprosthesis. Going into that surgery, I had no idea that there was any remote possibility that I wouldn’t receive a mechanical valve. This is an unusual scenario. I’m simply sharing because it can happen to others if it happened to me.

I also had a very hard time with the second surgery and recovery. I had cardiac tamponade two days after the surgery and had to go back into the OR. I suppose that means I’ve technically had open heart surgery three times (never thought of it this way until now). The ‘event’ happened shortly after the nurse practitioner pulled the pacing wires. Thank God my husband was with me. He recognized that something was not right and ran out of my room to get help. Next thing you know they were rushing me down the hall and back into the OR….the whole was surreal and something like you see in a movie or on t.v.

Luckily I only spent a week in the hospital but recovery was much slower that 2nd time around. I didn’t bounce back at 44 as quickly as I did at 31. Now, at age 50, I’m on the countdown for the 3rd AVR. My former cardiologist of 20+ years is concerned about the worsening of the stenosis ( moderate) to the bioprosthesis. I had an echo at the end of April. He retired in July but gave me firm instructions to have a repeat echo at the beginning of the year. It looks like my timeline is moving up since he wants me to have another echo in less than 12 months. I do regret not getting a mechanical valve 19 years ago.

Zara, I wish you peace with whatever you decide. It is not an easy decision. You may consider adoption, fostering, or volunteering with a children’s organization as an alternative to childbirth. Just food for thought because we can’t predict what the future holds for us.

Lisa2 I MUST say you should talk to a lawyer, it is very VERY unacceptable for any doctor to this unless it was talked about FIRST. The thing is some doctors think of themselves as demi GODS and above us lessor mortals. The only way some people learn is when it cost them MONEY, think about it.

BEST OF LUCK
Dave

 

[Protimenow]

I would get the mechanical valve because of your age. I have the St Jude** mechanical valve that will out last the soft valve by a long time. There is a lot of info on this.

This is your choice, dont let ANYONE talk you into something you dont want.

With the soft valve you will probably need it replaced at some point maybe a few times.
With mechanical value you will have pleasure of listing to the CLICK CLICK CLICK and have a hard time getting to sleep for a few months, so will your bed mate

The most PAINFULL thing in my life was at home after the operation. I was in the most pain I have EVER felt. I would sit on the couch and cry, I had not cried for many years, think pre teens. At one point I swore to myself I would NEVER EVER do it again. You can live with taking pills. This is something that will affect you the rest of your life.

GET OTHER OPTIONS

When I was young my GP NEVER told me about the heart murmur. At Army basic training the doc said I had a murmur but nothing to worry about. Then when my GP retired, the new one told I had a heart murmur and it needed action now. I saw a new cardiologist the next week and he said "let me know the soonest you can check in and the next week I was on the table.

I missed two things about taking warfarin are the INR testing once a month, its just a finger prick and when ever you are in the hospital you MUST let them know + any military service.

** insertion date 2008 15 years ago.

The INR test should be done WEEKLY, not once a month.

INR can change from day to day, and waiting a month to detect changes could be extremely dangerous.

 

[Protimenow]

The INR test should be done WEEKLY, not once a month.

INR can change from day to day, and waiting a month to detect changes could be extremely dangerous.

Pellicle - I didn't see your post that said the same thing.