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Old 05-07-2007, 06:48 PM   #1
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youngthree HB User
Protein C Deficiency & Pregnancy

1 year ago I had multiple PE's. The dr's originally thought it was a result of oral contraceptives but now have diagnosed it as a result of a protein c deficiency which is being treated with coumadin.

I'm currently planning my first pregnancy. My hematologist is not pleased with the idea at all and is insistent upon providing me with statistics about the dangers of pregnancy and blood disorders.

I would love to hear from anyone with this disorder or similar disorder who have had either successful and/or unsuccessful pregnancy's as to what to expect, what should I look for in selecting the correct medical providers during this time, given the opportunity would you do it again, etc.

Your help would be greatly appreciated!

Last edited by youngthree; 05-07-2007 at 06:49 PM.

 
Old 05-09-2007, 08:41 PM   #2
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ummok88 HB User
Re: Protein C Deficiency & Pregnancy

Hello there... Well, I don't have a protein deficiency that I know of yet. I was diagnosed 1-28-07 with a DVT left leg from my groin to my ankle. They are saying it was caused from birth control pills. The put me on coumadin and Lovenox too quickly in the E.R. and forgot to do the genetic testing before I was given any meds. Well, since I was off the birth control, I just recently found out I am 6 weeks pregnant. I was taken off the coumadin immediately and am using Lovenox injectons once a day. I still have a little bit of the clot left in my leg, but seem to be doing well with the pregnancy. I am seeing a perinatal specialist. They are high risk pregnancy OBGYN's... My doctor told me it's not impossible for people with clotting disorders to become pregnant, you just need to be monitored closely. You will be on Lovenox or some other form of heparin if you find out you are pregnant. Coumadin causes severe birth defects. They say that pregnancy, just like being on the pill, makes your blood thicker, making it easier to develop clots. I have a friend that is 6 months pregnant using Lovenox everyday and her pregnancy is going very well. Don't worry, just make sure you are seeing all the right doctors. Maybe you should see a perinatal specialist before you get pregnant, so you can get a better idea of what is in store for you! Good Luck to you!

 
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Old 05-26-2007, 09:22 PM   #3
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karrinbear HB User
Re: Protein C Deficiency & Pregnancy

Please forgive me I have not ever really spoken openly about my blood disorder before. I had an episode of DVT's when I was 18 years old, 50 small clots in each leg and one about cherry size in my inferior vena cava. The Dr's all told me it was because I was taking birth control pills while smoking. Two weeks shy of ten years later, I had another DVT in my knee. This was 10 years of not taking birth control pills. They then DX me with Protien C & S def. that was in 2003. Since then I have been on Coumadin and switched to Lovenox during a knee surgery. I'm a lifer with anticoagulant meds. In 2005, I went to my OB/GYN for normal check up. Since 1993 it has been a roller coaster on weither I could have a baby. First I was ok but would be bed ridden. Then I would only have to be bed ridden for the last trimester. Now they say I would not even be able to concieve at all natural it would have to be invetro. At that they only gave a 10% chance that would work.

I have heard of some women having both C & S def. having babies but there were alot of complications. Don't get me wrong, there is still apart of me that wants to try. That is something I want more than anything. I have been very blessed in my life though, I married a man who has custody of his three boys who now call me MOM. I'm not willing to risk that.

Thank you for letting my share my story. This is something alot of people don't understand.

 
Old 05-26-2007, 09:22 PM   #4
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karrinbear HB User
Re: Protein C Deficiency & Pregnancy

Please forgive me I have not ever really spoken openly about my blood disorder before. I had an episode of DVT's when I was 18 years old, 50 small clots in each leg and one about cherry size in my inferior vena cava. The Dr's all told me it was because I was taking birth control pills while smoking. Two weeks shy of ten years later, I had another DVT in my knee. This was 10 years of not taking birth control pills. They then DX me with Protien C & S def. that was in 2003. Since then I have been on Coumadin and switched to Lovenox during a knee surgery. I'm a lifer with anticoagulant meds. In 2005, I went to my OB/GYN for normal check up. Since 1993 it has been a roller coaster on weither I could have a baby. First I was ok but would be bed ridden. Then I would only have to be bed ridden for the last trimester. Now they say I would not even be able to concieve at all natural it would have to be invetro. At that they only gave a 10% chance that would work.

I have heard of some women having both C & S def. having babies but there were alot of complications. Don't get me wrong, there is still apart of me that wants to try. That is something I want more than anything. I have been very blessed in my life though, I married a man who has custody of his three boys who now call me MOM. I'm not willing to risk that.

Thank you for letting my share my story. This is something alot of people don't understand.

 
Old 06-14-2007, 01:00 AM   #5
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debra3188 HB User
Smile Re: Protein C Deficiency & Pregnancy

Hi, girls!

I have FVL and Protein S Deficiency and just delivered my baby girl in February. I was on Lovenox throughout the prenancy and was tested every month. Before delivery, I was taken off Lovenox. Sadly, I threw a massive PE 3 weeks pp, but hemo says it was because I stayed on Lovenox when I should have been switched to Coumadin. I'm currently still on Coumadin.

The main thing was to find a team of doctors who understand these disorders and know how to "treat" them. My OB is a high-risk OB and my hematologist knew I wanted to get pregnant beforehand. They were very supportive and patient with me.

It CAN happen!!! Good luck!

 
Old 06-25-2007, 08:46 AM   #6
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holly35 HB User
Re: Protein C Deficiency & Pregnancy

Hi there

I too am having difficulty trying to get advice and information regarding accidently getting pregnant.

I am warfarin for life for protein c deficiency, 5.5 mgs a day. I have accidently and yes I know stupidly got pregnant. I am going for a scan tomorrow but I know I am 4 weeks.

I am getting very conflicting advice on where to go from here both from my doctor and consultant, with regards to stopping the warfarin or carrying on with it.

I know that many of you will disagree with my decision but my personal circumstances prevent me from carrying on with the pregnancy and I wish to have a termination.

My doctor disagrees but fully admits he knows nothing about protein c deficiency and only a little regarding warfarin and has referred me to a second doctor.

My consultant has told me off for getting pregnant while on warfarin and but has offered full support but has commented that as there are only three people at my hospital with this deficiency and the other two are men that I would be their first experience of dealing with a pregnancy, let alone a termination!

I need help and information, I dont know where to get it from there seems to nothing on the internet regarding my situation. It all seems to be about what to do before getting pregnant, rather than accidently getting pregnant while not wanting to be.

Please, can anyone help?

Thanking you in advance

 
Old 07-05-2007, 01:34 AM   #7
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bec_bec HB User
Re: Protein C Deficiency & Pregnancy

Hi there,
I am 5 weeks pregnant and was diagnosed with Protein C defiency last year. My gp said that I will have to begin Claxane Injections..... Im awaiting my hospital appointment. Could anyone shed some light on this subject... all I know is its to prevent blood clots, and I will start these shortly and continue to the end of my pregnancy, Im new to all the Protein C defiency information. My dad died of a PE (due to Protein C def) to the heart and lung, 13 years ago, and my sister and I were both diagnosed with it last year, after our mother died. Also what are the chances of any of my children having this??? I have a 11yo girl, 9yo boy and 6yo girl already. Any information that could ease my mind a little would be great as I said Im all new to all this, all i really know is Im protein c def' 5 weeks preggers and will have to begin these Claxane injections. I am 28years old.

Bec
(australia)

 
Old 07-14-2008, 11:08 PM   #8
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mamermarose HB User
Smile Re: Protein C Deficiency & Pregnancy

I was diagnosed with protein c deff about 6 years ago. My father had a series of clots in his leg and found out he has it. I was tested for it, to find out if I could be on birth control (birth control with hormones can further risk of clotting) I was positive so my hematologist said no birth control for me. That led to me getting pregnant in July 07. I did not see a hematologist during pregnancy. I was immediately put on 40mg/.04 Lovenox injections once daily and 81mg of asprin daily (had already been taking asprin since protein c diagnosis) I went to my normal appointments at gyno and every 4 weeks i had an ultrasound at a highrisk doctor for a more in depth look at baby. Once I hit 30 weeks i went to doc once a week for NSTs and then twice a week for NSTs at 36 weeks. The plan was to stop taking asprin at 37weeks and stop taking lovenox 24 hours prior to being induced after 38 weeks (lovenox is mostly out of system after 24 hours asprin takes longer) My doctor called a hemotologist at the hospital and he said as long as my PTT time (clotting factor) was ok (blood not too thin) that i could get an epidural if i needed one. I made it to my date and everything went as planned. I started back on lovenox 24 hours after delivery for 6 more weeks. (you are at the highest risk for a blood clot for 6 weeks postpartum)

I was nervous throughout pregnancy that there would be a complication from the protein c. Everything worked out ok this time. The shots were a pain but I got used to them. However everything was worth it and now we have a healthy 3 month old girl.I want to have another soon, but i dont know if we will. There was a lot that could have went wrong. If i went into labor before the induction date my doctor said i might bleed too much from not being off the blood thinners. in that case she said a transfusion may have been neccesary. there is also a small risk of a hematoma from the epidural however i was on the lowest dose of lovenox so my doctor said i shouldnt worry about that (i still did)

Last edited by mamermarose; 07-14-2008 at 11:24 PM.

 
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