Last week I received my test results from my visit with the high-risk pregnancy specialist. It showed I had a Prothrombin 20210 Mutation (Factor II Mutation); It is a kind of blood clotting disorder. So yesterday Josh and I met with a Genetic Counselor. She was super nice and answered all of our questions before we even had time to ask them. We met with her for over 2 1/2 hours.
They determined that I got it from either my Mom or my Dad. So one of them has it. They went through my whole family medical history, but nothing sticks out on either side, so we don't know which side it came from. However, it does not always cause problems for people who have it. That is how you could have it and not know. It was only discovered within the past 10 years.
Prothrombin is a protein in the blood that is required for the blood to clot. Blood clots are composed of a combination of blood platelets and a meshwork of blood clotting protein fibrin. I think Prothrombin is the meshwork. If someone has too much Prothrombin, blood clots may form when they shouldn't. This website has additional information:
http://www.circ.ahajournals.org/cgi/content/full/110/3/e15
I learned that even if someone knows they may have a Prothrombin Mutation they aren't treated unless they have a history of having a blood clot. The risk of putting someone on blood thinners who may not need it is more dangerous. Like I said, not everyone who has a Prothrombin Mutation will for sure have a blood clot. So if they put all pregnant women who have a Prothrombin Mutation on blood thinners who have not had any history of having a blood clot more women and babies would die than be saved. It kind of sucks I had to find out THIS WAY!
So since I have a history of a blood clot now, she suggested I take one baby aspirin a day for the rest of my life. Since they now know what caused Katlyn to die they said I can try and get pregnant again whenever I am ready since it has been over 3 months, but Josh and I are gonna wait awhile. Once I get pregnant, they will get me in for an appointment within 2 weeks and then will teach me how to give myself Heparin injections everyday for the duration of my pregnancy. I will also have ultrasound's every 4-6 weeks. They will monitor my blood clotting levels throughout and adjust the Heparin intake accordingly. Once I've given birth they will put me on warfarin (which is a stronger blood thinner, but dangerous to babies) There is a stronger chance of clotting after giving birth so they put me on that once the baby is out and it can't hurt the baby. I will be on warfarin for about 6-8 weeks and then go back to the baby aspirin. This will have to be done for all my future pregnancies.
She said it doesn't necessarily make me more susceptible to heart attacks or strokes, but it does make me more susceptible to deep vein thrombosis (DVT), which is a blood clot deep in your calf. It also makes me more susceptible to pulmonary embolism (PE), which is a blood clot in your lungs. But they said if I ever get any symptoms I just go in and they can dissolve it. They said if I ever get into an accident or need major surgery I should let the doctor know I have a Prothrombin Mutation so they can give me blood thinners.
I am not too keen on the idea of giving myself daily injections of Heparin, but I will do whatever I have to if it will save my baby. So it sucks that I have this clotting disorder, but at least now we know what happened.
11 comments:
Jenny,
I'm happy that you have the answers you need and nthe information to go forward when you are ready.
hugs
Colleen
That is great that they were able to diagnose you so quickly. I have a good friend who has the exact same thing and has lost 3 babies in the second trimester due to the exact same blood clotting disorder. She now has a healthy baby boy. I also have a blood clotting disorder but it isn't as serious and I just take an aspirin a day, even while pregnant, no blood thinners. Good luck to you both and hopefully your mom will keep me posted!
Angie
I'm so glad to hear that this is manageable. You can move forward when you are ready!! I'm glad you are taking time to heal. All the best to both of you and your future kids!! :)
Take care of yourself!!
Angie, I have some questions for you, can you post your email? or email me mickeyj_3@ayhoo.com
The daily injection thing. I would not worry - you are way way stronger then you think you are and maybe it is just a tiny prick needle thingy.
lv rm
Jenny, I just sent you and email.
Jenny, I am thinking of you, and glad you have some answers. I've had genetic counseling before, and it's stressful even if it gives you the answers you seek. Good luck when you decide to pursue another pregnancy.
I'm so happy for you Jenny. Sounds scary, but I'm sure a relief just to have some answers. I can't wait to see your little young'uns, you are going to be such a good momma. I love your sensitive heart...
b
Hi Jenny
My friend just went through this, and she said it was a lot easier than she thought it was going to be.
She has a blood clotting disorder (not sure if it is the same), but the dr was worried about her miscarrying, so she had to give herself injections of heparin twice a day during pregnancy, and then for a few weeks after that.
At first, she had a lot of bruising, and swelling where she gave the injections, but she said she got used to it quickly. Apparently you have to give the injections in your skin on your abdomen, in different areas. So she had all these little bruises for quite sometime.
However, she is thankful for everything....even the bruises as she just gave birth a few months ago.
I hope that when you and your husband are ready, that everything goes well for you. You deserve it!
vicky
Vicky,
Thanks for the info. It's nice to hear about success stories. It gives me hope!
Anytime Jenny! I helped her through most of it in the beginning bc she was so scared, but it all worked out for the best! I hope everything works out for you too.
vicky
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