second opinion on protein c&s deficiency - Blood and Blood Vessel Message Board

carolpace · 05-01-2003, 09:53 PM

Hi, I am new to this sight, I am 40 year old female and until 2 months ago I was in good health I thought. I suffered 4 clots in my lungs, and they couldn't find out where they came from, couldn't take coumadin was at 20mg and afraid to go any higher, so now am on lovenox 2x's a day, just been retested for the deficiencys as my doctor says having both are rare. Is anyone out there with the 2 deficiencys, scared and don't know what to expect, new tests should be back next week.

ShannonHope · 08-24-2003, 10:14 PM

My grandmother and one of my aunts have this I believe.. I have been tested for it but luckily It was negative.. I hope that you have found out the information that you needed ......

jeavant · 08-26-2003, 06:47 PM

i am 39 yr. old female/july 09 dx with protein c&s deficiencies & lupus anticoagulant/on coumadin for life/also shots in stomach lovenox/nov 02 had subarachnoid hemorrage/jul 03 dvt/pulmonary embolisms/i never heard of any of these disorders and i am afraid also/

bjcan · 08-27-2003, 07:59 PM

I am new to this site and I am happy that I finally found some where to communicate with others concerning my dx of Protien C and antithrombin III deficiency. This illness is very complicated and I have not found anyone that understands what I go through. I am a now 40 years old married with a 13 year old daughter and a 6 year old son.

My daughter has been tested with no signs of the illness but my son has not. I have two sisters, the oldest sister has been tested with no signs of the illness, but she is my half sister. My middle sister has not been tested. She and I share the same parents. My mother was tested and did not show any signs of this disorder. My father has not been tested. I truly believe that my father is the carrier but it has not been proven.

In 1996 I suffered a stroke shortly after giving birth to my son. I had a chance to see his face and hold him prior to feeling like a freight train was going through the back of my head. The pain started in the base of my neck. I then began throwing up and heard the doctor call code blue. Thank God that my OB doctor ordered Heprin.

Doctors at the hospital could not believe that a healthy woman in her early thirties had a stroke.

Several test were ran and I was given the dx CVA and possible MS. After a series of test and many doctors visits, I was dx with the blood disorders. I never believed that I had MS. I always thought that something was wrong with my circulation but I didn't know what. I was prescribed an asprin and told to visit my Hematologist at least twice a year for lab work and updates.

I was later in an automobile accident in 2000 which caused me to have a TIA. I started really going downhill at that point. I was later put on Plavix and an asprin. In 2002 I had another TIA and was hospitalized for 10 days was given lovenox injection twice a day. I have been on coumadin since the hospitalization. It took me over a year to get stabalized with the coumadin. We still have to change the dosage from time to time.

Is there anyone out there who has been involved in an auto accident? How long did it take you to recover?

Sorry about the long message, I am just too excited to have someone to discuss my dx with.

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[This message has been edited by bjcan (edited 08-27-2003).]

katec · 08-29-2003, 05:20 PM

Hi,
I am in need of some information. I am a 29yo female. Last year I was hospitalized for multiple Pulmonary Emboli. I was treated with warafrin for 8 months. I came off my medication around 6 weeks ago and 2 weeks ago I had a follow up blood test. My doctor called me on thursday to tell me my Protein C level was at 54 and normal levels are between 70-140. I have spoken to my specialist who is sending me for another blood test to confirm the results.
I have (luckily) been healthy all my life. I had no pre-existing factors when I fell ill. I am very worried because I dont know what this all means....
Can anyone help??