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

[Zara0006]

You could get lucky, your odds of the tissue lasting are pretty low because of your young age and at that point when you are still very young they’re very unlikely to do a taco. I would make the assumption that you are definitely having a second OHS to put in a mechanical valve. Did you ever get to talk to a perinatologist / high risk obgyn? What did they say?

Hi, no I haven’t had a chance yet. In the UK it’s quite difficult to get a referral to specialists and they all have long waiting lists, so I probably won’t be able to before the surgery. I do work in a hospital though, so I guess I could try and track one down and ask them!

 

[dornole]

Hi, no I haven’t had a chance yet. In the UK it’s quite difficult to get a referral to specialists and they all have long waiting lists, so I probably won’t be able to before the surgery. I do work in a hospital though, so I guess I could try and track one down and ask them!

Heck ya, I would def try to pull some strings and get an informal consult. Clearly some women on this board have had successful pregnancies with a mechanical valve. It would be a shame to set yourself up for repeat surgery if the most up to date and expert knowledge says it’s manageable. You really do need an expert.

 

[Protimenow]

I have already gone through one bowl of popcorn on this string. 8>)

Popcorn on a string. Sounds like you're getting ready to decorate a tree.

 

[Survived03]

Popcorn on a string. Sounds like you're getting ready to decorate a tree.

My "bowl of popcorn" post was a tongue in cheek comment about the entertainment provided during posts from pages 2&3.

 

[Protimenow]

Of course. So was my comment about putting the popcorn on a string to decorate a tree.

I understood your message.

 

[Varago33]

"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 thank you for your info I will listen to the people that have advised me on this for 25 years. But YES for sure it can change fast but over reacting can make it worse.

You’re giving a lot of advice for someone who doesn’t believe anyone should be following it.

I did not want to reply to this BUT, I would like to say, A thinking person would read what I wrote and come to his OWN conclusion why would you assume other wise?

Dave

 

[pellicle]

A thinking person would read what I wrote and come to his OWN conclusion why would you assume other wise?

perhaps because a thinking person wouldn't make a post telling people to think and may assume there was some reason why the place isn't a spam fest or over run by bots.

And perhaps there is some moderation happening and some approval systems for members joining.

. For all we know you could have 10 names, do you really think that everyone has only one account with one name?

because of the aforementioned approval system.

Perhaps you aren't as thinking person as you may think you are?

If you assume people are adults (instead of what you did) you would assume that people can make up their own minds and don't need you to spoon feed them with implications that they should see it your way.

But don't believe anything anyone ever tells you on this forum.

Best Wishes

 

[Varago33]

Protimenow thank you for your info I will listen to the people that have advised me on this for 25 years. But YES for sure it can change fast but over reacting can make it worse.

I did not want to reply to this BUT, I would like to say, A thinking person would read what I wrote and come to his OWN conclusion why would you assume other wise?

Dave

perhaps because a thinking person wouldn't make a post telling people to think and may assume there was some reason why the place isn't a spam fest or over run by bots.

And perhaps there is some moderation happening and some approval systems for members joining.



because of the aforementioned approval system.

Perhaps you aren't as thinking person as you may think you are?

If you assume people are adults (instead of what you did) you would assume that people can make up their own minds and don't need you to spoon feed them with implications that they should see it your way.

But don't believe anything anyone ever tells you on this forum.

Best Wishes

It seems like you have a need to embellish a LOT.
Someone once told me looooooooong** ago that if you feel the need to embellish then you dont really have an argument.

Dave

** yea I am that old

 

[pellicle]

It seems like you have a need to embellish a LOT.

I thought I needed to make it obvious. However not to worry, these problems are easily solved.

 

[Elcarim]

Hi everyone, thanks for the replies and advice. My surgery is planned for Jan and I still have not decided. I had planned to go for the mechanical one, but the surgeon called and asked me to reconsider if I ever want to have children.

Now I am back to being undecided - I’ve read Pellicle‘s suggested threads which were helpful, but my surgeon and cardiologist believe it’s probably too risky to consider pregnancy on warfarin. I also have an underactive thyroid and apparently warfarin and levothyroxine don’t work well together, but I’m yet to research this further. I’ve been advised to consider the bovine valve for now, and a mechanical one next time. The comment someone made about risks of each surgery does worry me, especially regarding the effect on cognitive function, so I think I have some more research to do!

Hi Zara, I can't believe I missed your question as this is something I have experienced and have a LOT of thoughts about.

I was diagnosed with a bicuspid aortic valve at 19yo. I had my first OHS at 22yo, where after a lot of pressure from family members I had a tissue valve put in so that I could still have babies. This valve lasted only 5 years, and I managed to squeeze in two pregnancies in that time. I was very young.

I had a mechanical valve put in when I was 27yo. I ended up with heart block from the surgery and I have been pacemaker dependent for the past 18 years. That would be fine, but one of the leads interferes with my tricuspid valve, so I now have heart failure from tricuspid regurgitation. I also spent years suffering from PTSD due to the whole debacle. I'll probably need another surgery to address the tricuspid regurge at some point, the thought of which absolutely gives me the horrors.

From my point of view, I feel like my long-term health was sacrificed for the benefit of children I wasn't even sure I wanted. If I had known the risks of multiple surgeries and how awful surgery would be, I definitely would have done things differently. In my 30s I looked into having another pregnancy on warfarin, and while my doctors were happy to 'give it a go' I decided that the risks were too great. The threads on here about women's experiences of pregnancies with mech valves make for harrowing reading.

There is a very good chance that if I'd had the mech valve put in first time around my tricuspid valve would be fine now and my heart would still beat on its own. I suffered from severe anxiety for decades, and it is only in the past couple of years that I have been able to afford to get help for it.

Think very carefully about what each course of treatment could mean for you long term. You are older than I was when I had to make the decision, but to this day I greatly resent the way my ability to reproduce was prioritised over my ability to live a normal, active, healthy life. I'll never get my health back, but there are other ways to be a parent other than birthing your own children, if that is important to you. Of course I love my kids, I am fortunate that they are healthy and also that they are good people. But I'm only 46yo and the amount of support, time, effort and money it takes to keep me functional enough to enjoy my life is often overwhelming. My children's father has never expressed any gratitude for what it cost me to have them. He is still 100% healthy.

Mine is just one story, but it's a big decision, and women are so often pressured into doing what is best for others, not what is best for ourselves.

All the best for whatever you decide.

 

[Zara0006]

Hi Zara, I can't believe I missed your question as this is something I have experienced and have a LOT of thoughts about.

I was diagnosed with a bicuspid aortic valve at 19yo. I had my first OHS at 22yo, where after a lot of pressure from family members I had a tissue valve put in so that I could still have babies. This valve lasted only 5 years, and I managed to squeeze in two pregnancies in that time. I was very young.

I had a mechanical valve put in when I was 27yo. I ended up with heart block from the surgery and I have been pacemaker dependent for the past 18 years. That would be fine, but one of the leads interferes with my tricuspid valve, so I now have heart failure from tricuspid regurgitation. I also spent years suffering from PTSD due to the whole debacle. I'll probably need another surgery to address the tricuspid regurge at some point, the thought of which absolutely gives me the horrors.

From my point of view, I feel like my long-term health was sacrificed for the benefit of children I wasn't even sure I wanted. If I had known the risks of multiple surgeries and how awful surgery would be, I definitely would have done things differently. In my 30s I looked into having another pregnancy on warfarin, and while my doctors were happy to 'give it a go' I decided that the risks were too great. The threads on here about women's experiences of pregnancies with mech valves make for harrowing reading.

There is a very good chance that if I'd had the mech valve put in first time around my tricuspid valve would be fine now and my heart would still beat on its own. I suffered from severe anxiety for decades, and it is only in the past couple of years that I have been able to afford to get help for it.

Think very carefully about what each course of treatment could mean for you long term. You are older than I was when I had to make the decision, but to this day I greatly resent the way my ability to reproduce was prioritised over my ability to live a normal, active, healthy life. I'll never get my health back, but there are other ways to be a parent other than birthing your own children, if that is important to you. Of course I love my kids, I am fortunate that they are healthy and also that they are good people. But I'm only 46yo and the amount of support, time, effort and money it takes to keep me functional enough to enjoy my life is often overwhelming. My children's father has never expressed any gratitude for what it cost me to have them. He is still 100% healthy.

Mine is just one story, but it's a big decision, and women are so often pressured into doing what is best for others, not what is best for ourselves.

All the best for whatever you decide.

Hi,

Thank you so much for sharing, and I’m sorry that you had to go through this, hopefully it’ll get better for you.

It’s really difficult as I think women have more to deal with in terms of hormones etc, and effects of warfarin aren’t really great. For a male I think it’s a much easier decision to make, and theoretically a mechanical valve would be great to avoid further surgery.

My operation has been delayed so I have a little more time to decide at least!
Thanks for your input, really appreciate it!