DIC Survivor

  1. I have to admit this, but I am not a nurse...nor am I a nursing student. I gave birth to my first child 2 years ago when I developed an amniotic fluid embolism (the doctors aren't sure). I had to have an emergency hysterectomy, and my kidneys and lungs failed. I was put into a medically-induced coma while on continuous dialysis. After my kidneys came back, I was in the hospital for another month due to blood clots, muscle deterioration, and a mysterious fever. When I went home, I scoured the internet looking up information on DIC and for other women who have experienced this. There are 2 reasons for my posting on here:

    1. To let all the nurses know that you do make a big difference on your patients. Most of mine were great...very kind and patient with me.

    2. To maybe connect with anyone else who has experienced DIC.

    I have been thinking of volunteering in a hospital. I think my experience could help other women (only experience advice--never any medical advice). It would've been a great help talking with another woman who had DIC...how they have coped with it, how you still experience side effects 2 years later. Does anyone have any advice on how to go about this? Does anyone have any experience with DIC or patients who have had DIC? I was thinking about meeting with a head nurse (called a charge nurse?) about my situation and maybe giving my phone number to other women who may want to talk with me.

  2. Visit hunnybee profile page

    About hunnybee

    Joined: Jan '06; Posts: 2; Likes: 1


  3. by   palesarah
    Quote from hunnybee
    I was thinking about meeting with a head nurse (called a charge nurse?) about my situation and maybe giving my phone number to other women who may want to talk with me.
    I think that's a great place for you to start. They may be able to point towards an appropriate support group, if one exists (DIC is rare, surviving an amniotic fluid embolism neurologically intact is so incredibly rare there may not be others to connect with). But even if it's just a support/talk group for women who experienced complications, they may be able to help you - better than we can, I would think.

    Thank you for posting your story!
  4. by   mandana
    I know someone who survived DIC that was secondary to bacterial meningitis, so maybe you could visit neuro rehab centers or the like. I think its really great that you want to share yourself with others, and I think people, especially those shortly out of recovery who are still struggling with regaining strength and may not ever feel like they'll be 100% again would be a truly incredible gift.

    And it would not be uncommon for someone in your situation to be experiencing some post-traumatic stress, so if you need to reach out to someone for your own well-being, be sure you seek that!

    Best to you,
  5. by   judyblueeyes
    Wow, hunnybee!

    As you know, AFE has a high mortality rate. I'm glad you recovered and I'm impressed with your desire to 'do something'.

    Our hospital keeps a 'buddy list' and has 'group' session for various patient groups (antepartum and Nicu). Maybe you could check with the hopsital's social service department to see if they have groups for which you could volunteer.
  6. by   renerian
    I am glad you survived. My mom did not. I think volunteering is a great thing to do.

    God bless,

  7. by   rn/writer
    We lost a mom to DIC at my hospital just a couple of weeks before Christmas. Beautiful baby (their first) and now no mom to take care of the wee one. The dad and the extended family were crushed with grief. And the staff took it hard as well. Even now, six weeks later, we can't believe that what should have been a happy birth could go so wrong so quickly.

    You are VERY blessed to be able to tell your tale. Along with being available to support others who have survived this ordeal, perhaps you can write an account of your experiences. Write what you remember (and what others have told you) about the acute phase and rehab. And then continue to keep a journal of the ongoing physical and emotional effects. Who knows? You might have the makings of a book or a magazine article.

    I'm glad you are still here with us.
  8. by   SmilingBluEyes
    I am glad you survived. I think the notion of volunteering to help others is great. Pursue it!
  9. by   gypsyatheart
    I am so happy you survived! You are indeed blessed.
  10. by   hunnybee
    Thanks everybody for that! I just wonder how people will respond to me if I asked them to give my phone number to a woman (or her family) when she's fighting for her life. I'm sure some people may think that I have an ulterior motive, but hopefully they will talk to me long enough to know that I don't. Anyway, thanks for the nice messages and support.

    By the way, if anyone hears of another woman with severe complications like me and who wants to talk about it with me, I would be more than happy to talk with them. I'm originally from the Houston area (where I gave birth), and I recently moved to the Dallas area. I know the moderators discourage posting e-mail addresses on here, so I would assume that someone could leave me a private message. Thanks for spreading the word!!
  11. by   PettyOfficerNurse
    I am in my second semester of nursing school. In my first semester I learned what DIC was. I didn't learn this from the testbook, or the teacher. I learned this because my dad wento into full DIC during the placement of an acites shunt. (moving fluid from the abdominal cavity into the bloodstream) I was 5 hours away, no one from the hospital called me, luckily my aunt went to the hospital and called me. I was on my drive there, still unaware what DIC was. Fortunately I have a friend that works in the ER (secretary) and i called him to ask him. He went silent when I asked him what it is, he put me on hold and spoke to a MD. I could tell he didnt want to tell me how serious it really was. Long story short...Dad survived, after many units of blood and plasma, one trip to ICU after a supposed transfusion reaction, and a month long stay in the hospital. The shunt ended up coming out since that was the cause. I am happy to hear you survived DIC, from what I hear at school, nobody does, but it looks like I know of two that have I also want to be a L&D nurse, so this is all good info for me to have.
  12. by   Cherry2
    I am so glad you are alive, but so sad you missed the early time with your baby. Thank goodness you are here for everything else.

    Have you considered starting an online support group, or one in your own city? Go to the hospital and see what can be done. I am sure there are many people out there who could use your support and experience. Good luck!
  13. by   gwenith
    As the other posters have said Amniotic Fluid Embolus is rare and I don't know that you will find that many other survivors (sad but true) HOWEVER there are a LOT of post-partum life threatening disorders that will land a Mum in ICU and that current have no champion. Try HELLP syndrome or as we are referring to it here HELLP - ITP/HUS spectrum disorder.

    I work in an ICU that services one of the busiest Maternity hospitals in our country and we see so many rare and devastating post-partum complications with very little in the way of support groups for these women.
  14. by   ThomasMilner
    I am also a D.I.C. survivor it happened during a renalectomy in 2003. Within the first day alone I was given 59 units of blood and more over a week for which I remained unconscious...its pretty weird to go into surgery and then awaken eight days later.I would be very interested in speaking to you and to know how your health is now.You may contact me at thom@netutah.com It is been difficult to find another survivor.