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 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.

Thank you again for your response.

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 http://www.protein.org.uk, 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.

------------------

Thank you very much for your reply and the information about the website. I hope things go well for you.

Angela

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.

I hope things go well for you.

Angela

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 tanya319:
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

Hi,

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.

Good luck to you.

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.

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 MUM HAS PROTEIN C DIFENCEY,CAN I HELP

aLocke and LAdy, I don't have protein C deficiency but protein S deficiency. I had 2 miscarrages and one still birth but have 4 health children. I have also had 2 DVT both resulting in multiple PE. It wasn't until November that It was discovered. I understand that the warfarin (coumadin) interact with the tests so I have to have more next month while on Lovenox shots. Have you heard of this? I guess the protein S is a co-factor of protein C both involved in clotinginteraction with factors like V and VIII. Hope you are well. Beth AKA little wonder. :wave:

hi every one i have just been diagnosed as having a protien c deffiecncy i am 19 weeks pregnant and i will be having a section at 38 weeks i just wanted to know how people coped being on heprin or other thiners for the rest of your life .this was a shock but looking back my dad has had svt and my mum has had clots as well and does any pne wear medical alert bands? :)

Hi Heres One Very Possitive Not For All Of You With Protien C Deficiancy.
My Mum Has It She Takes Warfrin Daily And Has To Have Her Bloods Done Twice A Week As Her Inr Is Very Unstable.....but She Is Now 66 Years Old Suffers With Hb But Is Well. And This Is A Lady Who Clotted While Being On Iv Heprin. So If Your Wondering What Your Future Holds...hang On In There Because We Thought My Mum Would Never Reach Pension Age...
Good Luck To All Of You

And Stay Healthy Xx

I am meeting with my doctor next week. but my blood work shows I am low in two Antithrombin III (Xa and ???) . Also my Anti-beta 2 glycoprotein is high and I have homozygenous mutated gene called MRTH C677 . I called my doctor because I was able to see my results and he said he would explain everything when he sees me and told me not to worry.

They completed these tests because I had an episode of Ischemic Colitis and was hospitalized for 5 days. Prior to this happening I had dizziness and my Blood pressure which is always low, kept fluctuating up and down. Which the doctors said was a sign I was bleeding internally and then the dam broke.

This past year I have had heaviness in my legs and my ankles swell and my hands. My Ob/Gyn said it was perimenopause causing this. I am only 46 yr old but my Grandfather had Cardiovascular disease and blood clots which whom I am assuming I might take after.


IF anyone has any suggestions I would truly appreciate it. I feel like I am a walking time bomb.

Thanks,

Opiebud

I am meeting with my doctor next week. but my blood work shows I am low in two Antithrombin III (Xa and ???) . Also my Anti-beta 2 glycoprotein is high and I have homozygenous mutated gene called MRTH C677 . I called my doctor because I was able to see my results and he said he would explain everything when he sees me and told me not to worry.

They completed these tests because I had an episode of Ischemic Colitis and was hospitalized for 5 days. Prior to this happening I had dizziness and my Blood pressure which is always low, kept fluctuating up and down. Which the doctors said was a sign I was bleeding internally and then the dam broke.

This past year I have had heaviness in my legs and my ankles swell and my hands. My Ob/Gyn said it was perimenopause causing this. I am only 46 yr old but my Grandfather had Cardiovascular disease and blood clots which whom I am assuming I might take after.


IF anyone has any suggestions I would truly appreciate it. I feel like I am a walking time bomb.

Thanks,

Opiebud

Hey all

I found I had Factor V Leiden deficiency and Protein C deficiency at age 20 when a DVT was found in my left leg. It went from just above my left hip to my knee so I was put straight on heparin. After a week they stopped the heparin and the next day I was back in hospital as the clot had extended to my foot. It turned out my mum and sister only had the Factor V Leiden and I just had the bad luck of the Protein C also. I went on Coumadin until a year later when the docs decided to stop it. It has been 11 years since that clot and in that time I have had three scares. I have been back on the Coumadin for the last year and a half as I had a P.E and found that I had an 85% higher chance of clotting than the average Joe without it. I have had two children and had to do the heparin injections twice a day with my son (8 years old) and thankfully only once a day with my daughter (5 years old). The children have been tested and my daughter is all clear and my son has the Factor V Leiden. It shouldn't affect him too much except with surgery etc.

The thing I find most frustrating is nobody tells you the foods and medications that can affect the INR levels. In the last 2 weeks mine has gone from 2.8 to 4.0 and we have no idea why!! ha ha

Anyway, nice to hear from you all

Steph

I have protein C and Factor V Leiden Deficiency. I am on Coumadin and I also wear the medic alert bracelet. It isn't much fun doing the heparin but you will be fine

Hi All,

I am a 51 year old woman with a history of multiple pe's. I am on coumadin (stable) and have been for 6 years. I have been diagnosed with a protein c deficiency (hereditary). Recently my 36 y/o sister had a dvt and pe following knee surgery, her hematologist says her protein c test was normal and that she has acquired hexagonal phase phospholipid (lupus anticoagulant) instead, Seems odd to me that one sister could have a hereditary clotting disorder and the other one acquired. We have all have multiple miscarriages (3 sisters), my daughter (28) just had her first mis a couple of months ago, she has an 18 month old son and did not have any complications with her pregnancy. I'm going to her dr's with her this am for coagulation testing. I've read that the protein tests, especially c & s are notoriously difficult to get accurate results on, as a matter of fact I've tested pos and neg to both in the last few years. (off coumadin of course).

The only particular hassle I find with the coumadin is that to have ANY procedure done where I have to stop taking it it's back on the lovanox again. My CT scans showed multiple old PE's not just the two I thought I had and now I'm told I have silent PE's and must always be on coagulation therapy.

I would welcome news, advise etc.

Rae

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 was diagnosed with protein c deficiency at age 29 after my third pulmonary embolus. Actually, the last time I had multiple clots, which formed spontaneously.I am gratelful I finely had a doctor who would listen to me, before I had any complications, other than some loss of lung function. I have been on Coumadin for 14 years now, and will be for the rest of my life. All of my cousins, and my only brother, also are positive for protein c. It seems the females in our family have problems with clots once they enter child bearing age, while the males are okay into their 50's and 60's. Has anyone found any research on this? Also, any info on the long-term effects of anti-coagulant therapy on someone like me, who has been taking them non-stop since her late 20's?

I was diagnosed with Protein C and Protein S deficiencies on May 24, 2006 when I went to the Neurosurgeon (I had had a fusion surgery of the lumbar spine on 1/13/06) to get my backbrace removed and I had a stroke (not a TIA, a real stroke) in the brainstem while in his office. I remember going up to his office and being confused all of a sudden, the corner of my lip was numb, and the light bothered my eyes even with my sunglasses on. When I removed my glasses my right eye had moved all the way to the right and the left eye was straight forward. I was dizzy and very unbalanced. The neurosurgeon, calmed me down, and sent me to the ER where they called a "brain attack". About 10 med students; residents; doctors flooded the ER and began testing. I had an MRI, CT, MRA, and those test the following day. All blood test were performed. Blood tests for everything from Lupus to AIDS were performed. The combination with an oral contraceptive and the Protein C and S deficiencies had set things off for me.

Now, I am doing well. At first I had to take a regular aspirin everyday. Now I am on 81mg a day. I do however have to watch how many salads I eat, and green veggies I eat. Lots of veggies have Vitamin K in them and will thicken your blood. I make it a point not to eat more than 3 salads a week. I used to eat them all the time. My vision is better. It is almost as good as it used to be. I was only 26 years old at the time though, now 27.

My father has protein C and takes Coumadin and has had many blood clots in his legs. I have had one in my arm from the IV from when I was in the hospital from the stroke. My great aunt takes Coumadin, as well as my great Uncle, and my second cousin. They are all Protein C deficient. I suspect my grandfather on the other side (my mom's) side of the family was Protein S deficient because he died of a heart attack a few months after a stroke and his son has had quite a few TIA's. Otherwise, I wouldnt know where I got the Protein S from.

It is liveable if you take care of yourself. However, they did tell me at the hospital to NEVER take aspirin if you become pregnant or are planning on it. Aspirin will harm the baby. Also if you or your parents are protein C or S then there is a 50% chance of passing it on to the child. So you may want to get tested and oral contraceptives are a big NO NO.

If you have any questions, let me know, I will be happy to answer them if I can. I hope your mom does well.

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)

I was diagnosed with Protein C Deficiency during my last pregnancy. My half sister was diagnosed the year before also with a C and S deficiency. She has to be on lovenox daily. She also has had multiple blood clots. Me on the other hand I just have to be medicated during pregnancy and need to have increased prenatal testing and am not allowed to carry past 38 weeks because of the affects the disease has on the placenta. The only thing I am not allowed to do is use birth control.