Oops--forgot to mention...

[jackie]

I failed to mention--Mayo also found out I had Factor V Leiden Mutation (FVL). Which, from my understanding, might be causing clotting on that hole in my heart and giving me TIAs. It's hereditary and I have heterozygous, which is one mutated gene from my mom or my dad. (Homozygous is from both parents and it's more rare). If anyone knows about FVL or has it, I'd like to know anything you do to avoid clots.

Thanks again,
Jackie

 

[Swill]

Factor V Leiden

Factor V Leiden

I can look through my notes, I might still have information about it. Are you of Dutch descent? My understanding is that can be traced back to an area of Holland called Leiden, which is where my family is originally from. When I had a thrombosis event in my mid-30's I found out about it from my Dad (who is a doctor) and had myself tested. Turned out negative. But then my dad and both his brothers had thrombosis events within a month of mine. Yeah, I think heredity had something to do with it.

Anyway, that possibility has helped me decide that when the time comes I'll probably be getting a Mechanical Aortic valve, as I'll probably have to be on blood thinners anyway...

Try http://www.fvleiden.org/

 

[richie rich]

jackie

hi. my wife has factor five leiden. we found out about it this past July. unfornately our son died before we found out she had it. my wife had a complete placenta rupture at 38 weeks and my son died because of it. they could not save him. we found out that my wife had developed a clot between the lining of the placenta and her uterus. this forced the placenta to completely rupture from the wall. sometimes this happens and the child can be saved because the placenta is still attached to the wall partital. in my son's case the placenta completely fell off thus my son lost all oxygen. she had a very hard pregnancy but she never bleed prior to the morning of my son's death. it has been a vey sad time for us. this week was the six month aniversary of his death. my surgery last month was a breeze compared to the hardship that we suffer since Matthew's death last year.

my wife is homozygous which means that both of her parents carry the disease. their families both originated in Hungary. fornately i don't so my two other kids can only be hetozygous. ( of course now they have to be tested to see if they have bicuspid aortic valves, thanks to me). my wife belongs to an email list for factor five leiden. let me know if you are interested in join the list

best of luck
rich

 

[Nancy]

Hi Richie-

I just had a chance to read your post and I am so sorry at the loss of your little son Matthew. You have my deepest sympathy.

 

[richie rich]

thank you Nancy. it has been very hard for us. hopefully our trip to florida can help my wife feel some happiness. she always seems to be depressed.

rich

 

[alicia]

Richie, Im so very sorry for the loss of your sone. How hard it must be to carry on after that tragedy. I will pray for both of you. When is your trip to Florida? Are you takimg the kids to Disney? We went to Seaworld in October last year and it was awesome. You be careful and dont you overdo it. Your heart is still healing (in more ways than one) Take care my friend.

 

[jackie]

FVL List

FVL List

Hi Richie-

I'm very sorry about your loss. You both will be in my prayers.

I would like that FVL list so I can get more info. about this. I was just diagnosed a month ago and learning little by little.

As for the BAV, I'm glad I have the luxury of 4-5 years to decide on that. Who knows?? Huge advances could be made in that area by then.

Take care. Have an enjoyable vacation.

Jackie