If anyone has this blood clotting disorder, please reply. I would like to know how you are doing with the disorder and any problems you have had. This is a hereditary disorder which causes the blood to clot more than the normal person.
I have a very similiar disorder called Factor V Leiden...different disorder but same outcome of clotting and possible deep vein thrombosis. If you read the post here entitles Von Willebrand's sufferer you can see some of the info I posted about it....in one post I mention a friend of my bosses who had a disorder similiar to mine....I believe she had what you had.
I am not undergoing any type of treatment for it....are you? Do you have kids? How were you diagnosed?
I was diagnosed when I was about 14 years old. My mom suffered from a TIA (a mini stroke) and that is when they did tests to see what caused it. Since it is hereditary, my sisters and I were all tested (all positive). My mom was placed on Coumadin and had problems with the medication so she was switched to Plavix.
I have one child, 2 year old girl. While I was pregnant I had to take Lovenox shots (small dose of heparin) throughout my pregnance, and switch to the full dose of heparin injections the last four weeks of pregnancy.
My sister, about to give birth, had problems when she got pregnant. She developed a blood clot in her leg (she didn't know what it was) that moved and formed a pulmonary embolism. She was hospitalized in time and put on heparin to disolve the blood clot. She was then placed on Lovenox (a higher dosage than I was on) for her entire pregnancy. She goes to the hospital Sunday so that she can be induced on Monday.
My other sister has had no problems.
My uncle had two blood clots in his legs and is now on coumadin.
In short, we have determined that my grandfather was the carrier of the gene for Protein C Deficiency, however, he was never tested for it. He had symptoms though that lead to our assumptions. My grandmother has never showed any symptoms of the disorder.
Wow, your family has been through alot with this disease.
I was diagnosed about 2 years ago after many miscarriages. My doc told me I'd have to do blood thinner injections as well if I were to get pregnant. But I opted out since I am also diabetic, Rh Negative, and pushing 40. Sometimes I regret it but I think I did the right thing.
One of my sisters just got tested and she has the same thing I do, but she never had any problems with her pregnancy, so go figure.
So you don't take meds unless you are pregnant, like maybe a baby aspirin? I take one when I think of it cause I also have very high cholesteral and diabetes so my chances for artery problems are very high. But I take the aspirin on my own...no doc has ever instructed me to.
I am currently taking Plavix. It keeps the platelets in the blood from sticking together. I started that withing the last 6 months. I used to be on aspirin.
Angela,
My doctor put me on Plavix in July, 2001 to prevent possible stokes. I have had diverticular problem in the colon for many years. In February I had diverticular bleed and loss about 1/2 (4 to 6 pints) of my blood in 4 1/2 hours and passed out in the ER.
I was given a Vitamin K shot that stopped the bleeding. My hemoglobin went from 15+ to 8.4. I had a colon exam and 2 units of blood and sent home that day. Stopped taking Plavix--- 2 weeks later the bleeding returned and after a few tests I had half of my colon surgically removed on March 4, 2002.
It has taken me 5 months and alot of Iron for my Hemoglobin level to get back to the 15+ range and my ferritin level is still low.
The reason I'm telling you about this is that Plavix can be dangerous---it almost killed me. And, after much reseach since then---I don't think it'll work any better than asprin to prevent stokes or heart attacks.
I think---a more reasonable approach is a baby asprin every other day. I certainly think it's worth discussing with your Doctor!!!
I wish you well!!
God Bless---Harry
[This message has been edited by Harry (edited 08-18-2002).]
Thank you Harry for the information. However, I was on an aspirin treatment. Due the the incidents of blood clots in my family, I really need to be on the Plavix. I'm sorry you did not have a good experience with the medication.
My mom suffered bad side effects from being on coumadin. It was hard to regulate the clotting time of her blood, and she ended up with a clot in her kidney, and one in her abdomen that has almost taken a year to disolve. She is now on Plavix and has not experienced any problems.
I have protein s deficiency very similar to protein c deficiency.
I had a deep vein thrombosis and a pulmonary embolism both at the same time,this was back in 1987 I was then diagnosed after these two events with protein s deficiency. I have been told I will have to take Warfarin (Coumadin) for the rest of my life.
I have had two beautiful children, but this did have to be planned and I had to come off the Warfarin and have daily heparin injections in my abdomen. Both of my children will have to be tested when they get older.
There isn't very much info about these blood disorders, but I did find a good web site about these deficiencies [url="http://www.protein.org.uk,"]http://www.protein.org.uk,[/url] there are quite a lot of people who have joined the web site. I have found it very useful to speak to people in my situation. I hope you get on ok.
------------------
The Following User Says Thank You to tinasyn For This Useful Post: loolee (09-07-2012)
I have been affected by this as well. My sister has since recovered from 6 blood clots in her lungs when she was 22 and pregnant. I have also recently lost a 34 year old sister in-law to DVT which carried to her lungs. It would be nice to talk to other families that have been affected by this hereditary deficiency. We haven't figured out what side of the family mine came from and my husband's family is in the midst of testing. Thanks for the web site.
Originally posted by alocke: If anyone has this blood clotting disorder, please reply. I would like to know how you are doing with the disorder and any problems you have had. This is a hereditary disorder which causes the blood to clot more than the normal person.
Thanks,
Angela
hi my name is tanya and i am 27 years old. i have 3 children and 2 of them were born prematurely and left me with blood clots. i am currently on coumadin for a clot in my pelvis. have been for only 2 weeks. i also took it for 6 months after my first pregnancy. yesterday i got a call that i have a lifelong clotting disorder and am not really sure how to live with it or if its treatable. i know nothing about this disorder or how or if you even do live with it. because of my fears from the blood clots i am also taking anxiety meds for panick attacks.
Originally posted by alocke: I was diagnosed when I was about 14 years old. My mom suffered from a TIA (a mini stroke) and that is when they did tests to see what caused it. Since it is hereditary, my sisters and I were all tested (all positive). My mom was placed on Coumadin and had problems with the medication so she was switched to Plavix.
I have one child, 2 year old girl. While I was pregnant I had to take Lovenox shots (small dose of heparin) throughout my pregnance, and switch to the full dose of heparin injections the last four weeks of pregnancy.
My sister, about to give birth, had problems when she got pregnant. She developed a blood clot in her leg (she didn't know what it was) that moved and formed a pulmonary embolism. She was hospitalized in time and put on heparin to disolve the blood clot. She was then placed on Lovenox (a higher dosage than I was on) for her entire pregnancy. She goes to the hospital Sunday so that she can be induced on Monday.
My other sister has had no problems.
My uncle had two blood clots in his legs and is now on coumadin.
In short, we have determined that my grandfather was the carrier of the gene for Protein C Deficiency, however, he was never tested for it. He had symptoms though that lead to our assumptions. My grandmother has never showed any symptoms of the disorder.
i have 3 children. my first born at 32 weeks due to preclampsia and after delivery a bad case of dvt was found in my legs and pelvis. no trouble with second pregnancy but 3 weeks ago i had a 31 week baby. 2 days after leaving the hospital a clot was found in my pelvis. it was caught early and is being treated with coumadin. yesterday i got a call that i have the life long blood disorder but never knew it because i only clotted after pregnancy. how is this disorder treated being i'm already on coumadin
What is the name of the blood clotting disorder you have?
My sister (the one who had the pulmonary embolism) had her baby with no problems. Her doctor had her continue her Lovenox injections which she stops taking next week. Then her hematologist wants to take her blood. If it looks normal, he said she doesn't need to be on anything until she has another blood clot. Don't know if I would like that advice from my doctor.
Even though I haven't had any problems yet, it is a very scary thing knowing that with this disorder, you can develop a blood clot at any time. I am overly cautious when I get certain pains that I feel could be a blood clot, especially when the pain is in my legs or my chest area.
Originally posted by Lady^: I have a very similiar disorder called Factor V Leiden...different disorder but same outcome of clotting and possible deep vein thrombosis. If you read the post here entitles Von Willebrand's sufferer you can see some of the info I posted about it....in one post I mention a friend of my bosses who had a disorder similiar to mine....I believe she had what you had.
i have just been told i have this disorder after having blood clots after 2 pregnancies.i have a blood clot now and am on coumadin but am not sure of the treatment later on. is this disorder dangerous? i have 3 children who have to be tested. i dont know where it came from neither of my parents have it
I am not undergoing any type of treatment for it....are you? Do you have kids? How were you diagnosed?
Originally posted by alocke: What is the name of the blood clotting disorder you have?
My sister (the one who had the pulmonary embolism) had her baby with no problems. Her doctor had her continue her Lovenox injections which she stops taking next week. Then her hematologist wants to take her blood. If it looks normal, he said she doesn't need to be on anything until she has another blood clot. Don't know if I would like that advice from my doctor.
Even though I haven't had any problems yet, it is a very scary thing knowing that with this disorder, you can develop a blood clot at any time. I am overly cautious when I get certain pains that I feel could be a blood clot, especially when the pain is in my legs or my chest area.
I hope things go well for you.
Angela
it is a scary thought and i am on anxiety meds because of fear. i believe what i have is factor v leiden. but if i have this disorder why did only clot after pregnancy. and the clots were 8 years apart. now my children have to be tested. and i dont know where it came from because neither of my parents have it.
Originally posted by alocke: What is the name of the blood clotting disorder you have?
My sister (the one who had the pulmonary embolism) had her baby with no problems. Her doctor had her continue her Lovenox injections which she stops taking next week. Then her hematologist wants to take her blood. If it looks normal, he said she doesn't need to be on anything until she has another blood clot. Don't know if I would like that advice from my doctor.
Even though I haven't had any problems yet, it is a very scary thing knowing that with this disorder, you can develop a blood clot at any time. I am overly cautious when I get certain pains that I feel could be a blood clot, especially when the pain is in my legs or my chest area.
I hope things go well for you.
Angela
it is a scary thought and i am on anxiety meds because of fear. i believe what i have is factor v leiden. but if i have this disorder why did only clot after pregnancy. and the clots were 8 years apart. now my children have to be tested. and i dont know where it came from because neither of my parents have it.
what were your sisters symptoms of the pulmonary embolism? and how long was she in the hospital? on the was she already on blood thinner when she had it. and does the blood thinner make her heart beat fast?
Both my sisters have recently been diagnosed with Factor V Leiden, and neither have ever had a clot and both have had normal, healthy pregnancies. They only hot tested cause I have it and it runs in families....we were all surprised that they tested positive.
Hi everyone! I am new to this board and saw the one about low protein C--I was miss DXed at first with this because of nurmerous blood clots and a pulmenary embolism at the age of 22 (28 now) It was after I had my second child and they couldn't get me well-went down hill from there--they had me on coumadin to prevent further clots and am still on it --coumadin use (as told to me by my hemotologist) can cause a positive low protein C and yes I do have low protein but its due to the coumadin useage at least that was my understanding-I was also Dxed with Systemic Lupus and now they say Fibro--I am to the point of saying why do we keep looking----I have 3 beauitful children -my oldest I had no problems at all and she is 8 and then my second she turns 6 on Sunday-i was sick the whole time w/kidney problems and respitory problems--after the going round and round w/many drs and they put me on steriods I finally got better--but continued w/the clots until i ended up PG again and this time it was a oops and every dr i had was against me tring to carry him(all except my blood dr) he is the reason my son and I are here- i did the lovenox and they kept me super thin and my baby just turned 3yrs 4days ago--i was also on steriods and to to tell you the truth it was the best 9 months of life -so i truelly hope all the best to each and everyone of you -- and that i have been on coumadin for almost 6 yrs (along w/heprin and lovenox at different times) they keep my protime (INR) at a 3.0 to 3.5 no lower or i have another clot-My main artery in my left arm up into my jugular is damaged and the blood doesn't flow well unless my arm is up over my head--my vein has spidered out little veins to help w/blood flow---trust your instincts--I usually can tell when I have a clot-my father died when I was 9 of a clot and after many strokes--but he was never DXed -so i personally wouldn't want to wait for another clot to be put on coumain or even asprin --clots are deadly --I feel i have been very lucky--ok well i have jumped around so much that i hope this isn't to confusing--there has been so much that i am tring to just high light my experience--if you ever need a ear --i am here--Good luck to all and i will keep each of you in my thoughts!!--Lovelylockss
3 years ago I was dx'ed with protien C and S deficiency(congenital), AND cardiolipin antibody syndrome (aquired)so I am a walking time bomb for clots. I was dx'ed when I presented to the ER with a Pulmonary Embolism larger than a man's fist. I am the mother of 3 healthy boys ages 14-11 and am a marathon runner and triathlete so this just blew me away that this could happen to me. My mom died at 40 of blood clotting problems, but she smoked and drank and had a very different lifestyle. Currently I am on 8 mg of coumaden 5xweek and 7 the other 2 days. My PT and INR jump around like crazy and I usually have to go every week because of this. Recently Hypertension has been added to my list of medical issues. I am very thin with a resting pulse of 44 so again I am baffled. The Drs think a clott may have done some damage to my kidneys, which has caused the high blood pressure. Despite all this I live an active and happy life (so far). In fact, a year after the massive pulmonary embolism I qualified to run the Boston Marathon! So You can live pretty well with these blood clotting disorders.
If anyone has this blood clotting disorder, please reply. I would like to know how you are doing with the disorder and any problems you have had. This is a hereditary disorder which causes the blood to clot more than the normal person.
Thanks,
Angela
I am 21 years old now and I was diagnosed w/ this status in June of 03 after I had 2 mini strokes. Before the strokes, I had no idea that this was even going on but the doctors said that I had gotten the strokes from my birth control pills, dehydration, and an ear infection (which they said was the reason that they had found two blood clots in the lower part of my brain). Since then I am doing fine. I am currently on the coumadin and from the strokes, I only suffered numbness in my left leg and right arm which later decreased to occuring during period cramps. My concern right now is that I want to have babies. Last year I had the IUD but my uterus pushed it out. I went to the doctor to let them know of my desicion, but one doctor said that I needed to completely let go of the idea of having my own child and just adopt while the other said to just do my own research which is why I was led to this web site. So I would really like to know more about you and your situations with the protien c deficiency.
Protein C Deficiency 
Re: Protein C Deficiency 
