Lurker/TTC/Factor V

Danimarie525

Hello Everyone! I have been a lurker for a while now and figured it was a good time to post. When I was 16 I was informed that I have Factor V (heterozogous) which is why I could not be placed on BC. I was having terrible periods of cramping where I would pass out and be down for days. My grandfather has had a few blood clots and my mom is the carrier of the gene, but never had issues when she was pregnant with all 3 of her children and never had a miscarriage. I was never placed on any type on medication or injections for the Factor V, just told will have issues when I become pregnant. I was placed on a low estrogen BC pill for 10 years and recently stopped.  Fast forward 12 years to now and considering TTC within the next year. I moved to a new area and my OBGYN said she would prefer I see a High Risk Doctor when I get pregnant. When I asked if I should consult with someone ahead of time since I haven't been to the Hematologist since the original blood work (12 years ago) or see a OBGYN before planning she said I probably do not need too and most doctors will probably refuse since I am not pregnant. Any suggestions of how to approach this or who to talk with? I do not know anyone who has Factor V or been pregnant, just have the original paperwork from the first testing. I don't believe I have any other blood related issues associated with FV. Of course I google and everything that comes up is the worst case scenario. I still have some months where my cramps are horrible and I am down for a day, but nothing a to-go heating pad and Motrin can't fix. I am just trying to be prepared since I have had dreams of the worse case situations happening and know I will be stressed out to the max while pregnant not knowing what to expect.Any advice or recommendations are greatly appreciated. I would love like every other lady in the whole to experience pregnancy, informing family and friends of expecting, and seeing something I created. Just do not want to put myself and someone else at risk.

alylove11

Hey, I have Factor V (heterozygous), and I'm on baby #2. Once I found out I was pregnant with #1, I called the OB and they called the hematologist who I saw for consultation. He recommended Lovenox/Heparin entire pregnancy and 6 weeks post to make sure to reduce risk. I am 4 weeks now with #2, and I just started Heparin since it is significantly cheaper. It was a pretty easy transition, the nurse called in the meds and I went to the pharmacy to pick them up. Hope that helps! 

Merocket59

I'm usually a lurker as well but I'm in the same boat. I am homozygous for factor V but have never had a blood clot either. I was on BCP at the time so the first call I made was to the GYN to get off that. At the time she recommended I see a hematologist. I went as a formality but understood there was no reason for medication, just monitor my risk factors. When I started to think of TTC I discussed it with my GYN and she recommended seeing MFH doc prior to conceiving. So I went to see him and he recommend lovenox as soon as I have a positive test. Which has not happened yet, so the rest is to be determined. My current concern is who will be the one to prescribe the lovenox because my GYN does not do OB and the heme and MFH spots were just consults. I have a feeling it will be a game of pass the buck until I get in with an OB but I'm sure someone will cave and write the script since they all documented that is what should be done.

bsckgb7

I am lurker (but High-Risk when I get KTFU).  I reached out to our local MFM and they saw me for a "pre-conception" appointment.  I had to have all my records sent and once they reviewed them, they said I qualified.  You may to call around to MFM (the high-risk OBs) and ask about pre-conception appts).  That way once I get preggo, they will already know my history.  

amypann

I had a blood clot at 18 when I was on birth control, haven't been able to take it since. I tested positive for FV, also heterozygous. I had my first child at 28, started on lovenox injections immediately after positive test and continued until 6 weeks post baby. I had a miscarriage earlier this year but I believe to be unrelated, and became pregnant again immediately after and am now carrying a healthy baby at almost 11 weeks. I am 30 now and will be 31 at delivery. I am back on lovenox injections once daily. Though I don't enjoy giving myself injections in the stomach every night, it is completely worth it to be able to remain healthy for my pregnancy. Yes, I may pass this on to my children, but I may not, and since we know there is a chance we can manage their health accordingly. I hope this helps. Good luck to you!

Monicagail1

I'm not F V, but do have another pre-ex condition that puts me in the high risk category. I second pp's suggestion of researching OBs and/or MFMs now, and setting up a pre-conception appointment. I found it immensely helpful to sit down with the MFM ahead of time, go through my medical history, and map out a treatment plan for when I became pregnant. That way I knew exactly what my responsibilities were, and what my treatment plan would be ahead of time, and I felt much better about my health and baby's health during the early stages of pregnancy.

Good luck!