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Recooperating from PE's


Guest Kristy

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Guest Kristy

Hi there. I have visited this forum once before a long while ago and I am absolutely thrilled that it's out there for people to glean knowledge from. My name is Kristy. I have PSD and PCD. I have an interesting story to tell. I was 17 years old when I developed my very first DVT (Deep Vein Thrombosis). Five years later when I was 22 and after the birth of my first child I developed another DVT which landed me in the ICU with a PE (Pulminary Embolism). Two and a half years ago on January 29th, 2003 I gave birth to my second child. He was premature and was born with Potter Syndrom. He was born with out kidney's and his lungs never developed. He died 40 minutes later. I am now again at a five year mark (wondering if this has any significance or not) I am now 27 years old and I just gave birth to a beautiful baby girl. She was 3 days overdue, they enduced labor at 2pm and I delivered her at 3:03pm. I tore an artery and lost a lot of blood. They said they would have to give me a blood transfusion and I managed to walk out of the hospital four days later with out a blood transfusion. I was taking Lovenox shots with my second and third pregnancy and I was not diagnosed with PSD until I had my first PE when I was 22. One month after giving birth to my daughter I ended up in the hospital ICU on Mother's Day with multiple clots in both of my lungs. I was getting pressure in my chest and tightness and I was coughing up blood. I have never been very good at taking my medication for this disorder. As a matter of fact I have been refusing to believe that I have a problem with it at all. I kept trying to make excuses as to why I got the other clots (ex: I slept in a chair with my leg hanging all night). I now know beyond a shadow of a doubt that if I do not take my medicine I will die. My father has PSD as well and his mother had a clotting problem also.

I just came back from visiting my perinatal doctor who tells me it is highly dangerous to my health to be pregnant and that either myself or my husband should have an operation making it so we are sterilized. This was not an option for me because I do not want to take away my ability to have children. He says it is highly dangerous for me to be pregnant and that it could kill me and that I should not have the operation done but rather my husband have it done. He says for me to have the operation is also very high risk. I had the doctor give me a copper IUD for the time being until we can figure out what we are doing. At this point I know that I should not have any more kids and that I have been blessed with three beautiful children. I also know that I have to take my medication as directed by my hemotologist or face sudden death. My peri says it is a miracle I am still alive because most folks who experience PE's die instantly. Both of my encounters have been far more fortunate. The next one may not be so.

I intend to have both of my living children tested for this disorder. My son Alex is 6 years old and he complains of tingles in his feet and his legs all the time. My daughter Brianna is now 2 months old and I'm sure I'll have to wait a long while before having her tested. I do find it odd that every time I have an episode it seems to be five years from the last one. Is this coinsidence? Probably.

Thanks for this forum,

Kristy

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Dear Kristy,

First of all congrats on your brand new baby girl! And welcome.

I have to say that you have been through quite a bit as have other members of this site. A lot of people here have had multiple clots in variouse places of their bodies and to this day are living very healthy lives... I would strongly urge you to take your medicine as the doctor tells you, if you do you will have a more "normal" life than what you have been going through! It is very unlikley to clot while on thinners. As for clotting after your pregnancy maybe your perscription was too lite I'm not sure what to say about that...I am not an expert by any means, in fact pretty much all I've learned is from this site. I just feel for you and hope everything works out for the best for you. Take care of yourself, remember your health is in your hands too not just the doctors, your decisions are ultimatley what matters. Do what is best for you and your family as well as your health ;)

Julie

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Guest Kristy

Thanks Julie,

I appreciate your encouragement and sentiments. I know why I clotted after my pregnancy and it's simply because I was so overwhelmed with family coming from out of state to visit the baby and being up all night long with the baby that between lack of sleep and not being home all day long entertaining family that I simply forgot to take my medication as I was told to. I now have 3 calenders to help me remember, I'm quite a scatter-brain and it's far too easy for me to forget things like that especially since I am not on a routine of doing it and never have been. With the help of my family and my three calenders I have been doing well with it for 10 days now.

I know my health is ultimately my decision and everyone makes it seem like taking the medication is just so easy to do... well it really is easy to do. I just have a problem remembering. I don't think I'll ever get it down to taking it at the same time of day every day but as soon as I remember it I jump on it and take it.

My family is very important to me and I know now that this blood disorder is not just going to go away like I pray for it to. My doctor described it as being born with brown eyes. That's just the way it is, you can't change it.

It is certainly interesting.

Kristy

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