anyone have Factor V issues?

Re: anyone have Factor V issues?

• QueSrah member

  March 2010

  Not sure if this will help since I don't have Factor V issues, but...

   My mom was hospitalized for pulmonary emboli two years ago, and the doctors determined she had some genetic predisposition toward clots.  I discussed it with my OB at one of my first pg visits and she referred me to a hematologist.  (It's also an oncology practice, so that totally freaked me out somehow.)  Anyway, while my results came back not at all scary, I was under the impression that the hematologist would have managed that part of my care, at least for a while, if shots had been necessary.  (I was totally convinced I was going to need those daily shots for a while, too.)

  I assume your regular doc can talk through some of your questions, but it might depend on your particular OB for how he/she wants to handle it.

  

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• MrsSstrug

  March 2010

  aha! i did have a pulmonary embo. like eight years ago (no more pill for me...whoppee!)...i did see a hematologist at the time. i totally forgot about that until you just reminded me (just lots of blood draws really, nothing major)....thanks

  
  

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• membrn

  March 2010

  We've talked briefly in the past but I have a Prothrombin Gene mutation.  Sort of like Factor V but a different process in clotting. No PE but resultant stroke.  We consulted with a perinatologist last spring at UVa (Dr Saller) and he gave us the go and said that it is pretty run of the mill now for women to be on Lovenox (or heparin) while pregnant.  He is letting our local OB GYN manage me (I'm going to the one that takes the high risk cases of the practice, not peri, just manages high risk).  I will be referred to the peri that comes through our area one day a week (we also aren't in DC anymore). 

  So far, I am impressed with how easy my pregnancy has been (considering my stroke history, the morning sickness was not cake) because I always imagined a huge nightmare pregnancy.  I give myself the shot daily and that's the only thing that's really different. 

  My cardiologist, hematologist, and GYN (who's an NP) all kind of skirted around the issue so I pretty much had to ask outright for a perinatology consult.  I really recommend that.  When we met with the guy, I basically asked, "Can we have kids (is it safe for me) and how will I be managed if we can."  Things pretty much rolled along from there and cardiology and OB are following this guy's guidance. 

  Since I have had a clotting incident (three actually), I am on a pretty high dose of Lovenox (80mg daily).  A lot of women that have Factor issues with no clotting history are on 40mg daily.  So you might want to clarify which dosage they would want you on considering your PE.  Lovenox can also help prevent miscarriage and stillbirth (Factor issues can cause intrauterine growth restriction) in addition to keeping you clot free.

  Hope this helps and let me know if I can share anything else!  Sorry for the novel!
  

  
  

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• MrsSstrug

  March 2010

  i knew i had emailed with a nestie about this at somepoint but could not remember who. perinatologist is a new term to me. but this is useful!

  
  

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• WinesNotWhines

  March 2010

  A good friend of mine has a similar clotting disorder, but it wasn't discovered until after she had her first child. When they were TTC #2, she had 2 miscarriages, so her doctor ran some tests and discovered the clotting problem. When she got pregnant again, she had to give herself daily injections. She wasn't thrilled about the shots, but she had an uncomplicated and healthy pregnancy after she started them.

  

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• tracy042206

  March 2010

  Factor V runs in DH's family, not mine and luckily he is not a carrier but his mom is and had 4 successful pregnancies before she even knew about it.  I agree with pp about probably needing to see a perinatologist for a high risk pregnancy.  There are some good ones right on Shady Grove that I saw for both of mine (high risk for other reasons) that I can rec when the time comes.  For me I saw my regular OB in addition to the high risk since there was nothing high risk about my delivery so my OB did the deliveries.
  

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• MrsSstrug

  March 2010

  thanks for everyone's replies. the miscarriage risk associated with this is on the long list of why not to ttc (not the sole reason but not sure i could handle that). i will talk to my doc next week and see what the next steps are.
  

  
  

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• zeptattoo member

  March 2010

  I have Factor V hetero.  In addition to my GYN and PCP, I also had an MFM and hemotologist.  You will be considered high risk, so yes you will probably need this small army of docs.  It was well worth it though.  I've known I've had this for about 10 years so if you would like more info, just PM me.  It is hard to filter though all of the info.

  

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