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Factor V Leiden gene and protein C deficiency...scared and it's only early days.

(8 Posts)
LottyLikesWindows Wed 01-May-13 14:49:15

Hi everyone, this is my first post. I've found out on Monday that I'm 4 weeks pregnant and my initial excitement has been dampened by worry. In November I had a delayed miscarriage four days before my 12 week scan - scan showed that the embryo stopped growing at 6+2. I have been diagnosed with Factor V Leiden gene and Protein C deficiency many moons ago and did not even think to link this to pregnancy. My GP didn?t either!

Since then I've had a consultation with the recurring miscarriages team at my local hospital and I?ve been told that I would be classified as a high risk pregnancy in future due to my blood disorders. I called to make an appointment as soon as I got my bfp ? I will be seen on 17th May for a scan to ascertain a heart-beat. I am so scared that they won?t find one. They are also likely to start me on heparin or something similar. I?m worried that 17th May will be too late. Am I being a ridiculous worrier and should I just leave it in the hands of professionals, or call back and beg them to see me earlier?

Any advice or hand holding would be hugely appreciated.

kitty555 Wed 01-May-13 16:57:05

Hi Lotty! Sorry to hear about your MC last year.
Since you are pregnant again I wouldn't leave the appointment that long and ask to be seen earlier. I have Factor V Leiden as well and was told by my GP to contact them straight away as soon as I have a BFP as they would put me on daily clexane injections. Someone in my family has the same problem and is a few weeks pregnant, taking the clexane injections every day since the beginning of her pregnancy and has a scan every two weeks as she is classed as high risk.
Hope you get it sorted and someone will see you earlier. And congratulations by the way smile

LottyLikesWindows Wed 01-May-13 17:47:34

Hi Kitty - thanks so much for replying. I called the hospital team again this afternoon with my concerns but they are adamant that I should continue taking Aspirin for now and that they couldn’t start me on heparin/clexane injections until they can see a heartbeat and ‘until the pregnancy becomes viable’. I hate that word more than 'moist' now and that’s saying something. Getting shivers down my spine just thinking about 'moist'.

They are going to monitor and scan me every two weeks too - that really does help. It also helps to know that you've gone through similar thing - I don't know anyone else who has Factor V Leiden or Protein C deficiency.

I might call my new GP and see what they recommend. Keep fluctuating between feeling all positive and strong one minute to being on a verge of tears the next. I guess I just know how hard the MC hit me last year and I can't help thinking that I might have to go through it all over again. Thank you for your message again. I’m feeling the MN love and support already.

kitty555 Thu 02-May-13 16:51:05

You're more than welcome Lotty. Obviously I am not a doctor, that's just what I've been told. As long as they are monitoring you regularly that's good I think. After spending a long time researching online I figured that almost everybody has a different opinion about it anyway. I am sure you have noticed that as well - some doctors say don't do anything, some say take aspirin and some put you on these injections so it's confusingconfused..
I don't know where you live, but do you have the possibility to get a referral to a haematologist maybe? As they're obviously specialists and in theory should know best smile

SuiGeneris Thu 02-May-13 17:26:32

Hi Lotty, congrats on the bfp! I can understand your worry as I too had FVL and protein C deficiency. However, I am typing this after breastfeeding DS2 to sleep, so be reassured!

In terms of pregnancy, with DS1 I was seen by the high risk antenatal team within 2 days of bfp and was on aspirin until well into the third trimester, with many scans (a dating scan, 12 weeks, 20 weeks, then every four weeks until 40 weeks) and switched to clexane for 6 weeks before and six weeks after delivery. Was classified as high risk and under a maternal medicine physician as well as an ob.

With DS2 (different hospital and 2 years later) it was normal risk, aspirin from bfp until 5 days before delivery and clexane one week before and one week after delivery. Two scans (12 and 20 weeks).

A friend in another country was on clexane throughout the pregnancy (and now has a DD).

I guess what I am saying is that it depends on the team- where are you?

LottyLikesWindows Sat 04-May-13 17:12:30

Hi Kitty and Sui - sorry for such a late reply. The last few days have consisted of work and sleep. Cannot seem to stay awake for long. I'm in Greenwich and I'll be going for my scan at Lewisham Hospital. They've called and arranged for a scan on the 13th now again confirming that they would not want to start me on any further meds until they can see a heartbeat. Kitty you are definitely right - I think it's treated differently depending on the health provider.
Sui it's so reassuring to hear you've had healthy pregnancies and two lovely boys, even with the FVL and protein C deficiency. I really hope it happens for me too. I've been a bit of a mess with worry post my MMC - woke up today with hideous cramps and was convinced my period is coming.
Must get better at this positive thinking malarkey!

Gorja Sat 04-May-13 17:16:57

Hi,

I have exactly the same conditions as you and I have four wonderful healthy children.
I was started on clexane as soon as the initial scan showed a heartbeat, then had them daily until six weeks after birth. I also had to wear some lovely support stockings!
I was considered high risk due to have a previous DVT.
The hospital kept a very close eye on all the pregnancies and I had extra scans.

Try and relax and enjoy your pregnancy, there is no reason why you won't have a lovely newborn in about eight months!

LottyLikesWindows Sat 04-May-13 17:58:59

Thank you so much Gorja - I am willing to wear and do whatever they say, just so I can have a lovely newborn soon. Thank you so much for your encouragement. I can't tell you how much it all means.

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