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Thread: Important family history I didn't know about!

  1. #1
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    Default Important family history I didn't know about!

    My twin brother is currently in the hospital with multiple blood clots scattered throughout his lungs. He's doing better now that the pain is under control and the blood thinners are working.

    My mom's uncle told me on Facebook that he (the uncle) has a genetic clotting disorder (his dad, my great-grandpa, also had it) called protein C deficiency. I never knew that! They're testing my brother for it now.

    I've had 9 pregnancy losses and blood clots (one in my calf and a superficial one in my wrist) but my drs have never tested me for this.

    Whether my brother's testing comes back positive or not I'm going to request testing for it.

    Does anyone have experience with a protein C deficiency?

  2. #2
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    Wow! That would be something that the whole family should have known a long time ago!
    Jessica (33) and Ryan (33). Madelyn born August 5, 2009; Malachi born December 23, 2010 and Nathaniel born July 19, 2013. Lost a loved baby 02/29/12, 05/14/12 and 07/05/12 all due a serious allergic reaction to fabric softener.
    My Ovulation Chart , My blog about MCAD

  3. #3
    tiggerlb Guest

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    I have experience with clotting disorders. Not sure if it is the same or not but my mom had a genetic clotting disorder called a deficiency 5 factor. Was diagnosed in 1996 with it. They may have changed the name of it now since my mom has been gone 8 yrs now and not up to date in the currents medical callings for it hope you understand what I mean by that. But any way my moms disorder was this if she say bumped her leg or arm or any other part of her body on something hard enough her body would react as if the vein/ artery in the bumped area had been cut open and would form a clot. Even though there was no tramatic injury where a clot would form. She did have a superficial clot 2 x before but was never diagnosed for any clotting disorders due to the medical testing at the time. In 1996 what she was diagnosed with was only able to be diagnosed 8 yrs or so prior. And her incidents of her prior clots were in 1977 when I was born and 1x before that. This thing that she had is genetic and I was tested for it and I was clear for it , but being that it skips generations my children could have it in their genes and also if my mom would have had another baby he/she may have had it also.. It is controllable with blood thinners and pro tine blood tests

  4. #4
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    Jess, I would have thought it would have come up at some point too! Now that I think about it I remember that my great-grandpa had a number of strokes and eventually died because of a blood clot to his brain (had forgotten all about it...I was very young at the time).

    Tigger, I think it's called factor V Leiden now (did some Googling last night :-) ) and it is the primary cause of protein C deficiency. Thank you for sharing about your mom! That's awful ! I'm thinking about my kids too...praying it's not something they'll ever have to deal with but thankful they'll be equipped with the knowledge when entering adulthood so they can be tested and their care providers can make informed decisions if something comes up.

    With my brother they overlooked it because he's on zoloft for anxiety so when he went to the Dr complaining of sore legs and shortness of breath they said it's anxiety and increased his zoloft dosage. Now, a month later he has pulmonary emboli. He may not test positive for the clotting disorder but at least the info would have been there to consider...they may have pursued it rather than writing it off as anxiety. I'm just thankful he's okay now!

    Again, I may not test positive either but ever since I started taking baby aspirin and progesterone during pg (I start the progesterone after o and dtd and the aspirin when I get a bfp) I haven't had a m/c. Unfortunately, I have gastritis during pg which the aspirin exacerbates so I'll be addressing that at my pre-pg consultation too.

  5. #5

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    I am just recovering from a blood clot. They are assuming it was a complication of pregnancy/immobility/c-section, however, I am being tested in the future for protein C & S deficiency, anti-lupus antibodies, factor V, and anti-phospholipid issues. I can't have testing done until I am 6 months post partum, as the pregnancy affects the outcomes of the testing. Blood clots are a huge deal and need to be investigated to prevent further clotting issues!! I am currently on coumadin after 14 days of lovenox. Hope you get the answers you are looking for and I hope your brother has a full recovery!!






    Forever Missed. M/C at 11 weeks, 6/2009





  6. #6

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    I had a blood clotting panel done after having Luke 3 months early. I was heterozygous MTHFR with high homocystein levels, but was able to take Folgard and LDA during pregnancy. I know clotting disorders put you at very high risk for m/c. I would definitely be requesting the blood panel! I think it could explain your losses if you are indeed a carrier.




  7. #7

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    ..I just realized I posted in TTC. Sorry! Just saw this in the New Posts, and wanted to respond.




  8. #8
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    Quote Originally Posted by augustbaby View Post
    I am just recovering from a blood clot. They are assuming it was a complication of pregnancy/immobility/c-section, however, I am being tested in the future for protein C & S deficiency, anti-lupus antibodies, factor V, and anti-phospholipid issues. I can't have testing done until I am 6 months post partum, as the pregnancy affects the outcomes of the testing. Blood clots are a huge deal and need to be investigated to prevent further clotting issues!! I am currently on coumadin after 14 days of lovenox. Hope you get the answers you are looking for and I hope your brother has a full recovery!!
    Eesh, I'm so sorry you went through that! I hope your testing comes back clear. Thank you for sharing which tests you had...I wrote them down...I like to go to my appts with at least a little bit of knowledge :-) .

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    Quote Originally Posted by sparks3 View Post
    I had a blood clotting panel done after having Luke 3 months early. I was heterozygous MTHFR with high homocystein levels, but was able to take Folgard and LDA during pregnancy. I know clotting disorders put you at very high risk for m/c. I would definitely be requesting the blood panel! I think it could explain your losses if you are indeed a carrier.
    Wow, my heart goes out to you! I'm so thankful you had a good outcome...a scary time I'm sure!

    I'm really curious now...been thinking about my mom's family's obstetric hx. My grandma's sister lost twins, cause unknown, in her 5th month of pg. My mom's sister also lost a baby, cause unknown, around her 5th month of pg. My mom had my twin brother and me 2months early. Wondering if it's related somehow...it was a long time ago and from what I understand no testing was done. My aunt never did have children...not sure if she had more losses or just chose not to.

    Anyway, calling my regular Dr tomorrow to see if she'll order the testing. I haven't heard from my brother yet to know if his results are in.

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