I just received an email from my RE regarding the blood tests ordered yesterday. I'm not really sure where to go from here.
"You have an abnormal Factor V Leiden gene. This means you are at increased risk of blood clots and miscarriage (as we suspected from your mom's history). You will need to be on heparin and baby aspirin with future pregnancies. I would like you to see Dr. K who is a specialist in Hematology and Oncology. He will probably do much more blood testing to determine if there are any other abnormalities. You should be aware that you have an increased risk of blood clots on the birth control pill and you should not take it."
As if a busted uterus isn't enough for me to handle right now...another hurdle gets thrown onto the track.
7 years ago
13 comments:
Sorry I can't offer any advice on dealing with an abnormal Factor V Leiden gene but I just wanted to offer my support. That totally sucks! I hope you are able to get some advice from others with clotting factors. Send a note to Mel and ask her to post it on L&F. I am sure there are others in the ALI world that have dealt with this and can offer lots of helpful advice.
I'm so sorry. Sounds like the RE is doing some good things, even if they are a lot of diagnosis testing requiring lots of waiting, etc.
I've never even heard of Factor V, but I would echo kittx comment to post it on L&F. It's a great way to get feedback from the IF world - and probably someone out there has had it too.
Thanks for welcoming me back!!
I love the idea that you can email your dr (nurse) and set up apts. I have that with my primary care, but not my RE. It would be so nice...
Hi, its me, your friendly fellow clotting mutant!! I know you've visited my blog before- I've got Lu.pus An.ticoagulant, which is pretty similar to Factor 5. . And I'm 5 weeks pregnant with more than doubling betas right now, more than likely due to my daily blood thinner shots. (I'm on baby aspirin too, but was for the last preg too and that obviously wasn't enough). I'm really hopeful this time because of these meds!
Anyway, let me know if I can answer any questions for you. I must admit, I have amassed a ridiculous amount of knowledge about thrombophilias. I'm a geek that way. :)
Sorry that you found out about this - it must feel like getting slammed with a brick wall I would imagine. It seems so unfair sometimes when somethings are so easy for others - and just so darn hard for the rest. I hope someone else can chime in with some advice - I know there are others out there with this. But I unfortunately know little of it myself. I will email Mel to post it for people on L & F so hopefully someone can shed some light on it for you. Again, I am sorry for this additional brick being tossed your way..and I'll keep you in my thoughts and prayers. ((hugs))
I am sorry to hear that your issues are compounding... But you KNOW! And that is half the battle. Your RE was perceptive enough to pick up on this history and test you. Without this knowledge TTC would probably have been even farther.
I know it sucks being stuck in the constant research phase, trying to understand what is going on. But you'll get there. You will.
Hoping you get all the answers you need as fast as possible.
I'm sorry, sweetie. Sucks that you are getting more hurdles to jump! It's your summer Olympics. :(
It's good that you are being sent to a specialist, though. Can I also mention how jealous I am that your RE emails you??!
It seems clotting disorders are one of the better investigated/managed/treatable causes of RPL and it sounds like your RE is really proactive.
Hello m'dear. As requested, here are some bloggers I know of with related issues:
amaybestory.blogspot.com/
railyuh.blogspot.com/
nathalieherron.wordpress.com/
aliceintotherabbithole.blogspot.com/
The last two I don't read all that frequently, but I found them on Mel's blogroll. If you're looking for more, she may know of some that aren't listed under 'clotting and immunology'. I probably should be there, but I'm under recurrent loss instead. Or maybe she could post for you on L&F to reach out to others with F5?
I'm sorry about the result. These are very detailed blood tests you are going through. where I come from, we don't have such detailed blood tests. Good that you are going through tests to pin down the possible problems which will preventing from conceiving. Brace Brace!
I'm sorry.... but if there's a will there's a way, right? I'm glad fellow IF bloggers can lend some support and encouragment right now, and I also hope blogging has been a great release for you! Blessed luck on your journey!
i know someone who has this and is currently pregnant, doing heparin shots and doing really well. so i know it can be done! it's really great that you have this information! i wish you the best!!
http://emilythehopeless.wordpress.com/
I found you through L&F.
I was diagnosed with the MTHFR enzyme mutation that causes clotting as well. I don't want to sound all "oh, don't worry about it", but this is doable. It is workable. It's a hurdle that will have to be dealt with, for sure, but there are many of us who have been or are going the same and it's working. Really really working.
The shots are way uglier than painful. They leave bruises that had me calling my RE to ask if it was normal. But they didn't hurt (teeny needle). It just sucked to have to do them.
I came over from Mel's 'lost and found, connections abound' - just to say that my sister had a uterine septum (surgically corrected after a miscarrriage) AND has factor five leiden (heparin & baby aspirin). AND she aslo has MTHFR enzyme mutation. my sister ALSO HAS my two year old spectacular and perfectly healthy nephew (born prematurely but just perfect now). he is the light of our lives. i wish that for you.
thank you for your kind comment, i needed that! i've met two people that have had blod clots disorders that have lost babies very close to term. a baby aspirin and heparin shot regimen was prescribed for them. they each went on to have healthy babies. just stating that to give you some perspective, but i'm sorry this is yet another factor that you have to deal with. you will come to terms in time, it just has to sink in.
i'm sorry for your loss. really.
Post a Comment