New to this site and looking for advice

[Kitty]

Hi all

I'm a 29 year old girl with a thickened bicuspid valve with fusion of the right and left coronary cusps and reduced cup excursion. I have servers aortic stenosis and moderate aortic regurgitation. My last echo shows a peak gradient of 86 and an aortic valve area of 0.77. This is a congenital condition and I was diagnosed shortly after birth, so none of this should be a suprise but knowing about its one thing.......

I've always tired easy but was quite fit despite my limitations. Under the advice of my cardiologist we had our first child 5 months ago. Got through most of the pregnancy without trouble but became symptomatic in the last 2 months which resulted in a lenghty hospital stay. I'm now mostly symptom free. The tiredness is worse and I'm now only able to walk, no stairs or hills, occasional chest pain and I sometime wake up at night short of breath. We're planning on surgery within the next 12 months.

I understand my choices, tissue valve means we can have more kids but will need to repeat the surgery, metal valve means no pregnancy and taking warfrin for the rest of my life.

So what im wondering if there's any woman who have made this choice and what they chose because I'm having trouble and am fustrated as I don't like either choices

Also how taking warfrin will effect my daily life?

Sorry for the essay, just would love to get some advice from people who have been through it

 

[Cooker]

Welcome Kitty ... can’t weigh in on the pregnancy issue ... as for warfrin it has been a non-issue ... I’m 6 years, 5 moths post-op ... good luck on your choice ... I’m sure some of the ladies will be around to share their wisdom...

 

[dick0236]

I understand my choices, tissue valve means we can have more kids but will need to repeat the surgery, metal valve means no pregnancy and taking warfrin for the rest of my life.

Also how taking warfrin will effect my daily life?

Welcome Kitty. Like Cooker, I can't help with the pregnancy question, but if you put "pregnancy" in the search box, you will access many older posts on the subject.

I have been on warfarin since I had a mechanical valve implanted when I was 31. I have not found the drug hard to manage, but it does require developing the regimen of taking the pill as prescribed and testing routinely. It has seldom interfered with my life and has not caused me to be unusually careful.

 

[Rachel]

Hi Kitty,

Just wanted to welcome you to the forum!

I'm very sorry that I don't have any experience with pregnancy either (never had kids, and now I'm too old)!!! But congratulations on your first born!!!!

I had surgery a year ago and now I have a tissue valve, I'm not at all bothered by another surgery in the future, as long as it's not in the near future

I hope someone with pregnancy experience chimes in soon for you!

Rachel

 

[bahlvarun]

Warf non issue totally, believe me that is probably blown out of proportions, it's just like if you drive on the road you may die, all i am saying is you should not be scared of warf, it's easy to use and monitor too...

 

[Lynlw]

Warf non issue totally, believe me that is probably blown out of proportions, it's just like if you drive on the road you may die, all i am saying is you should not be scared of warf, it's easy to use and monitor too...

That is NOT true, especially for young womn like Kitty who arre considerring pregnancy almost every doctor, will reccomend a tissue valve for women of child bearing years since having a mechanical valve and needing to be on anticoagulants, can be very dangerous- life threatning to both the mother and baby, including increased chances of having birth defects, including facial ones. There are other reasons that people would choose tissue valves to avoid coumadin, but wanting to carry/ have your own children is one of the main reasons tissue valves are reccomended

 

[Madsometimes]

Hi Kitty
I was also told to go for a tissue valve if I wanted more children, but recommended mechanical if my family was complete. It was easy for me, because I already had two children, and was 39. At your age and with one child, I may well have chosen tissue and then swapped to mechanical at a later date.

Warfarin is not a huge problem day to day - it does cause heavy periods, so I've just got a mirena coil - useful for birth control too.

 

[AmyBL]

Hi Kitty -
I love that name. If I would have had a girl, I would have named her Kitty!
The options before you are less than ideal -- tissue valve, chance for more kids but likely more surgery or mechanical valve, no kids and coumadin. Seeing as how I am 50 and have three boys (18 and 12 year-old twins) this is not an issue for me but . . . if I were in your shoes and thought I would want the chance for more kids, I would go with a tissue valve. It is difficult to know if you will want more children later as your child is quite young. Where does your partner stand in terms of more children?

 

[Superman]

Tissue is no guarantee of no warfarin and mechanical is no guarantee of no more surgery (see my signature).

If I were in your shoes (which, being a male - I'm decidedly not) I would base my decision on whether or not I want to have more kids. You not only have to consider the impact of warfarin on your personal safety during pregnancy but also the impact on your unborn child as I understand it can lead to birth defects. You may also want to discuss the potential of a repair to get you through another pregnancy and give you time to consider a more permanent solution. Don't know if it's even an option in your situation - but could be worth bringing up.

Good luck with whatever you decide. Just remember any choice you make is going to be better than what you currently have. You've got (at least) one child that you need to be there for. Congratulations on that.

 

[ktnctmb]

Kitty -
My name is Katie and i'm new to this site too. I have the exact same congenital condition as you found when i was 2. I am also 29 years old and i just had my 2nd aortic valve replacement on may 18th. I had a tissue valve(pig valve) for 8 years ( we were hoping for atleast 4 more). My husband and i began trying to have a family in september 2011 and in may when we still were not pregnant and then learned the news of needing the valve replacement... We were devastated. I was really hoping to get another tissue valve in order to have no complications with having a baby (i run marathons and have always been told that i would have a healthy pregnancy and am fit otherwise)
However, two days before surgery we learned that a mechanical valve would have to be the choice because a third surgery in the future could be risky and perhaps fatal. We had to make the choice for the mechanical and now i am desparately searching for options to have a family. I have heard it is doable with the mechanical valve just not ideal ....otherwise we are also looking into surrogacy and adoption.
I am really happy to be in a better place with hopefully no more surgeries but the woman in me wishes i could go back in time. Be so thankful that you have one beautiful child.(which i am sure you are) I think if i had one of my own and could adopt more i would do the mechanical valve. Since its your first surgery you are in a better position than me and this could not be an issue...i wish you luck and would love to hear how you are after surgery... Its rare to find someone who is a woman and my age going thru this.
I plan on seeing a perionatalogist (high risk ob) to know the realistic options on pregnancy myself so i can proceed with grieving the loss of that or considering it. I am happy to share what i find with you.
Katie

 

[Kitty]

Thanks Katie, I agree it is rare to find a female around my age with the same issues. My partner is really supportive and says he's happy with whatever I decide but I know he does want more kids. In the beginning I was considering the mechanical valve but the more I think about the more I think I might take my chances in a tissue one. I think im not ready to dismiss the possibility of more children.

 

[ktnctmb]

Kitty - i don't blame you - especially if this is only your first surgery. Do you have a surgery date set yet?

 

[Kitty]

No date set, my cardiologist thinks it will be in the next 12 months. We see him again at the end if the year so will hopefully have more idea on what the plan is then

 

[Kitty]

Hi Katie,

Just wondering if there was a reason your tissue valve only lasted 8 years as my cardiologist told us I could expect at least 10-15 years out of one. He did say that he has known them to wear out before then but that was a really small chance of happening. My partners worried that if we go go a tissue valve (which is what I've decided I want) that the pressure if being pregnant will wear throu it quicker and we'll find ourselves back in this position shortly after giving birth.

 

[derekzmom]

Kitty,

What about the Ross Procedure as another option? Has it been mentioned to you?

 

[Kitty]

No it hasn't, we're going to ask about it at my appointment with the cardiologist next month. I don't think it's performed in Adelaide yet though.