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Post by jense927 on Jul 1, 2018 6:29:17 GMT -6
So at my first MFM consult the doctor recommended I double my dose of baby aspirin as a precaution to my previous placental abruption with DS. Then she ordered a bunch of genetic testing for clotting factors etc to see if she would need to put me on lovenex.
This was June 13th. I got an email on the portal that all my testing looked normal proceed as we had previously discussed. Then today I see that I have a new test result. She wrote me a long note (saying she couldn’t reach me by phone) that I have two mutations of factor V Leiden and I am at risk for blood clots. I need to go on lovenex.
I am freaking out and just wanted to write it all out and see if anyone here had anything similar. I am just so upset that I can’t be a normal pregnant person. After all the IF bullshit we went through this just seems unfair. Now I am so worried that we somehow won’t get a take home baby out of this. 3 of my group of 6 best girlfriends are also pregnant and it has been so awesome that we are all pregnant at the same time but now I am jealous of their “normal” pregnancies and worried that this will end badly for me.
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Post by charlotte on Jul 1, 2018 6:54:14 GMT -6
I won’t pretend to know anything useful about this, but I just wanted to say I’m sorry for the stress you’re under. I hope you’re able to talk to your doctor soon and ask lots of questions. I’ll be thinking of you! You’re right, it isn’t fair.
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Post by sarcaztic10 on Jul 1, 2018 11:48:53 GMT -6
I know several people that have the Factor V mutation and have had to be on Lovenox for each of their pregnancies. Most of them had the mutation discovered either during IF treatments or repeat loss tests. They have had healthy pregnancies and healthy babies. I know it can be scary, and it sure does suck, but it’s good that it was discovered and now it can be treated!
I hope you are able to start on the Lovenox soon and now your MFM can have a better treatment plan for you. Sending you lots of positive vibes!
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Post by tbirdlove on Jul 1, 2018 13:00:47 GMT -6
Hi jense927 😊 I hope you don't mind my intrusion - I'm from Sept/Oct 2018. I was diagnosed with a blood clotting disorder, anticardiolipin antibody syndrome, in 2015. It was discovered in testing for repeat losses. I am on Lovenox/Heparin (and baby aspirin) throughout my pregnancies and then also through six weeks postpartum as I am still at a higher risk of blood clots during that time. I'm expecting #2 so this is my second round with the Lovenox/Heparin/Aspirin routine. While I can't give any advice about your specific diagnoses, I'm here if you have any questions about the Lovenox. I felt so angry and alone and freaked out when I was diagnosed and then when I had to start the injections the first time, so I just wanted to reach out and offer support. Hugs!
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Post by sunshiney on Jul 2, 2018 0:57:27 GMT -6
Hey, lurker from Jan/Feb 2019. Diagnosed with PAI-1 mutation after multiple losses. I'm on baby aspirin and lovenox daily. For me, I feel most sad about not being able to have lovely baby bump pictures because I'm already covered with massive bruises at 5.5 weeks. But what has helped me is thinking about how amazing it is that medical science can test my DNA... When they just mapped the human genome in my lifetime... And what a blessing it is that I can get this treatment to save my baby's life, something that wasn't available for countless women in generations before me who must have had such pain from not being able to carry to term. Not as a guilt trip, but for me at least focusing on what I can be grateful for helps calm the intense feelings of unfairness. Wanting a normal pregnancy experience that our friends have is such a normal desire. Especially after requiring IF treatment.... It's like a different world from people who have the privilege of naively having sex and making a child! I try to keep in mind that everyone has their own struggles even if it looks like everything is perfect from the outside. But give yourself time and freedom to grieve this new diagnosis, it's a big deal and not at all what you were expecting for your pregnancy. Commiserating with others who are going through the same thing maybe can help... It definitely helps me to talk to others who went through it and did great and it was not fun but it was fine and baby is healthy. I am counting down my shots, and that helps me to feel like it's not interminable. I'm also using a lot of ice! And pepping myself up mentally that this makes me some kind of strong warrior woman.
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Post by summerrain on Jul 2, 2018 6:51:37 GMT -6
I’m sorry jense927. I have no experience with your specific complication, but I know how hard it is to not have a normal pregnancy when everyone around you is. Please know we are here to listen anytime you need to vent or just need some hugs or hair pats. I hope you are able to get more answers from your doctors soon.
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Post by jense927 on Jul 2, 2018 7:53:05 GMT -6
Thank you everyone (and special thanks to the lurkers!) It really helps knowing that I am not alone. I'm just so scared and hope that I am starting this in enough time to make a difference. I am still so upset with my OB office. When I called today to get the scoop the nurse didn't even know what I was talking about. Apparently the doctor didn't send the message along to the team just left me a note in the online portal. Such a nightmare. Now there isn't an MFM on staff today and they don't know the dosage so...yeah. I don't know what to do. Changing practices at this point seems like such a hassle but at the same time WTF.
Mostly I am mad that I specifically sought out a specialist two years ago to do any testing or get any advice on getting pregnant again after my placental abruption and this wasn't found. I just don't think they have their shit together...
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Post by lolacachia on Jul 2, 2018 8:03:25 GMT -6
I am sorry you are going through this. At the very least I would be finding out why the office is such a jumbled mess so you can feel confident and trust them moving forward. How do they send you normal results and then you get a further note that all is not normal?
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Post by Dramaphile on Jul 2, 2018 8:18:29 GMT -6
I can't imagine finding out like that about such a stressful medical issue! It's definitely not right for your doctor to tell you about it that way with no way for you to immediately get more info, especially after initially telling you everything came back normal. Sorry you're going through this, hopefully you can get things sorted out with your doctor or find a new one.
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Post by expatmama11 on Jul 8, 2018 19:22:23 GMT -6
I'm so sorry you are having to go through this. I do have a friend that had the same issue and was also on the same medicine for her whole pregnancy. She now as a very healthy and lovely one year old little girl.
The great part is the issue was identified and you can be monitored closely.
Hang in there momma!!
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