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Undecided about Trying To Conceive


Guest SDebe

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Hello,

My name is Sandi and I am new to this site. I was diagnosed with PSD about 3 months ago because my mother had a clot and was diagnosed with PSD...we were all tested and myself and my oldest sister have it. I have always been very active with no problems and would have never known about this unless my Mom had not had her clot. Once my doctors diagnosed me they took me off of Birth control but, I am not on any meds for PSD. I am writing because my husband and I have been turned upside down on the thought of pregnancy now due to this condition. I realize it is possible to have healthy pregnancies and since I have never had a DVT and have no symptoms it is a blessing to know this in advance but, it is a bit scary. We have all but decided we aren't meant to have children. My Hematologist said he would likely put me on Lovenox if I were to get pregnant. Are there side effects to Lovenox other than pain at injection? Are you able to continue to be active---I worry I will not be able to excercise or that I will be limited in some way? Since I know about this now and I am not pregnant, I am wondering if any of you were in this position? and how did you get past your fear to just go for it? I would love your thoughts.

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Hi Sandi,

Can't really help you with the Lovenox or the possible restrictions on activity. Just writing to say that you are not alone in this dilemma and it is a very difficult decision to make.

My husband and I are deliberating about whether or not to try for another baby and are seeking as much advice as possible from my haematologist. Like you I have PSD, but I have had 1, possibly 2 PEs. I have 2 children and went through both pregnancies unmedicated as had no idea I had any kind of medical problem. As a result I had a PE 5 weeks after my second child was born, and probably had a PE 8 weeks into my first pregnancy (wrongly diagnosed as kidney stones at the time). I am aware that any future pregnancy would be high risk for me. Having read all the posts about the daily injections (I would be on heprin) the prospect fills me with trepidation. Moreso as I have a history of problematic pregnancies anyway.

Having said all of this, despite the problems I have had I am very glad I had my 2 children. For me, so far, the benefit of having the baby at the end of it, has been worth the pregnancy strife.

At the end of the day it's a personal decision, and I suppose depends how much an individual is prepared to go through to have a baby.

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Welcome Sandi! I too was diagnosed with PSD because of a family members problems and have never had a clot myself.

You shouldn't need to restrict your physical activities any more than the average pregnant woman ask far as I know (ask your doctor to be sure). The possible long terms risks of lovenox are very, very low and include things like osteoperosis but they apply much more to people on high doses and/or on the medication for long periods of time. Suprisingly enough my OB and hemotologist say 9-10 months is not considered prolonged use of the drug. Because you have never had a clot you will most likely be on a very low dose, reducing the negilible risks even further.

My first baby was a suprise and I was diagnosed with PSD during the pregancy, so I just got thrown into the deep end so to speak. My husband and I debated for more than a year about having another (after not even considering it for 2 years after Alyssa's birth! :( ). I asked my OB a lot of questions and prayed a lot. Finally I just decided that life itself is risky. We take a risk every time we get in a car, and there are so many risks we can do nothing to prevent. If we think of all the things in life there are to be afraid of we'd be paralized with fear!! Knowing I've never personally had a problem and that there's something I can do to help prevent it felt to me like the equivilant of making sure my car has airbags and that I drive carefully. My daughter had added so much joy to my life, I can't imagine not having her! I always pictured myself having more than one child, and I refuse to let my fear change that dream.

Edited to add: I was going to post a link to a medical paper about different thrombotic disorders (like PSD) and their risk factors in pregancy, but in rereading it I remember it's very complicated and unclear. But, basically it said that PSD is so rare it hasn't been studied much as far as pregancy blood clot risks go. . In more common thrombotic disorders the rate of blood clot development in pregnant women with no previous history of clots is still quite low (under 5%). It was less than 1% in actual pregnancy and slightly higher during the 6 weeks postpartum. But the studies we very, very small. Those other thrombotic disorders are also known to contribute to twice the rates of clots than PSD is known for. The paper also strongly suggests that genetic factors are only part of what contributes to a clot. Lifestyle and other such factors play a very large part. So if you're active, a healthy weight, and otherwise in good health you're doing quite a bit to reduce your risk. Hope that helps.

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Guest LindseyJ

My story was just like yours!! I was diagnosed two weeks before I got married, and promptly taken off birth control. I have had two healthy pregnancies, and now I'm on my third. During both pregnancies I took Lovenox (starting about week 10 until a few weeks after birth) Lovenox has no side effects, but I did get some big bruises at the injection site. It is extremely expensive, so make sure your insurance is good (I estimate about $1000/ month in the US)

during my pregnancies I regularly had blood drawn to make sure I was taking the right amount of medicine, and I had about 3-4 sonograms to make sure the baby was growing correctly -- there is more of a danger, from my understanding, of the baby not growing right in the final months.

But, in all, I had two wonderfully uneventful prenancies. My hematologist said I do not need to take any injections unless I'm pregnant.

FYI - I was told to take alot of calcium and exercise to prevent osteoporosis, because I will never be allowed to take hormone replacement therapy after menopause

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Hi Sandi

Firstly Think positive! If you want to start a family don't let PSD get in your way. Knowing that you have it is a blessing in disguise; you can be monitored carefully and treated appropriately which will minimise your risks.

Secondly Your mum had you and she has PSD so it must be possible to have children right? (I'll add my three children to that total too so that's even better!) As you will have read on the forum, there are some of us who have had uneventful pregnancies and several children and others who have had mcs. The more people I know the more I realise that this reflects the reality of the general population (those who don't have PSD) too.

I have had only one non-pregnancy related clot (aged 30) and had all three of my children before that happened. We are thinking TTC in a year or so and PSD does figure in our decision but our desire to have another child in our family is greater than the theoretical risk of any problem. Having children already, I know that injecting every day is just the beginning of the sacrifices that you make for your children and 9 months is a blink of an eye.

Life is full of worries and doubts and sometimes those can cloud our judgement. Let it all sink in, arm yourself with advice and support, let it become part of your life rather than a scary thing then consider again.

Good luck, we are all here to support you if you decide to take the plunge.

Rachel

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  • 2 weeks later...

Sandi,

I am brand new to this site. Just found it tonight!!!

I had a PE back in 1991 while on the b/c pill. I then was followed by a hematologist after being hospitalized and on a heparin drip for a week. coumadin for 6mos. That was it. Years later I was tested and diagnosed with PSD. As a matter of fact, my S protein is practically non-existent.

I had a m/c at about 8 or 9 weeks without being on anything. When my dh and I became pg in 2000 I was put on Lovenox injections. Then coumadin for 6 weeks. I then developed a DVT several months after she was born. I was then put on coumadin for the rest of my life. I had a surprise pregnancy that ended in m/c early - around 5 or 6 weeks. I didn't start injections. Then in 2003 I started injections when we started ttc - I became pregnant and delivered a healthy boy (that's 2 healthy kids!). I just had another "surprise" pregnancy that sadly ended in miscarriage again. That's 3 for me. I started the Lovenox right away as I had some left over from my ds. I am so sad that this happens. I am 32 and do want one more baby. I feel blessed to have the two we have. I hope to start injections as soon as we start trying the next time and will hope for another healthy pregnancy and baby.

With all the injections and doctors visits . . . it is so worth it when I look at my two beautiful children. It is not that bad. There really aren't side affects to the Lovenox. And other than being followed a little more closely, the pregnancy is not that far from "normal" pregnancies. I had epidurals with both of my children and pretty "uneventful" vaginal deliveries.

I wish you luck in your decision.

Kerry

Mom to Casey 4 and Jack 20months

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  • 3 weeks later...
  • 1 month later...

Hi Sandi,

Firstly Think positive! If you want to start a family don't let PSD get in your way. Knowing that you have it is a blessing in disguise; you can be monitored carefully and treated appropriately which will minimise your risks.

I was diagnosed back in 1987 with PSD after a DVT and PE.

I now have two beautiful children. I was told not to conceive whilst I was taking medication. Once pregnant I was put on to fragmin injections twice a day, there was no other pain other than that when injecting.

I will of course have to have my children tested for PSD when they are old enough, I was told that they would have to be tested before puberty.

If you are really serious about have children dont let the PSD get in your way.

My best friend lost her baby because she did not know she had PSD but once she was tested and diagnosed she tried again and was treated with injections the same as I was.

She has never had any episodes herself other than when pregnant.

I hope this helps in some way, if you need to talk please email me.

Yours

Tinasyn

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