Anyone had disseminated intravascular coagulation (DIC)?
Has anyone experienced DIC following back surgery or any trauma? If you have, I’d like to know if you’ve experienced any long term issues and what are your symptoms & diagnosis?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
I completely understand that!! People are too freaked out by what happened to listen. It's like you have to walk on egg shells in fear of everyone else's emotions and everyone forgets that your body went through it, you need supported. That's been one of the hardest parts of this healing journey. I found an amazing therapist though and she has helped so very much by just being someone I can vent to. I have to have the hysterectomy finished next month. They only took my uterus originally. I'm hoping that will help any remaining symptoms.
Cam I ask what autoimmune disease you have? I have fibromyalgia and POTS, just curious if there's ever been a correlation between autoimmune diseases and post partum hemorrhage.
On May 16th, I had a spontaneous placental abruption and had to have an emergency c section to deliver my stillborn son at 37 weeks.
I went into DIC quickly and everything spiraled out of control it seemed. Catheter in my chest for blood transfusions and meds (and kidney dialysis eventually), and I had to have a 2nd surgery to remove a giant blood clot and to investigate why/where I was still bleeding internally. I was unconscious foe the first 4 days basically.
I remember coming out of the first c section and being able to hold my son for awhile. A couple hours later chaos started. I don't remember much but little blips from the first 4-6 days there. Once I was moved into cardiac ICU the 2nd week, memories are clearer. My kidneys shut down completely there for a couple weeks. Then they slowly came back to life and started working. It was a lot of up and downs while hospitalized for 5 weeks.
I swear I have long term side effects from the whole situation. Not just mentally but physically. I am seeing a therapist and psychologist so I am taking care of my mental side. Physically, I feel like my brain works differently now on top of ::
Mood swings out of nowhere
Trouble walking long distances or for a long time
Not as balanced as I was
Periphal vision fails me it seems
I was just wondering if there were others out there who have survived DIC and still have physical long term effects?
Thanks for reading. I hope everyone is healthy happy and safe ❤
Hello @bossmomma54 and welcome to Mayo Clinic Connect. Let me first start by saying I am so sorry for all you have been through, especially the loss of your son. It is good to hear you have sought help as you recover from this trauma.
I wanted to connect you with other members who have experience with DIC so you will notice that I moved your post into an existing discussion on the topic so you may connect with members such as @kbreder and @suzieq612, who both developed DIC after C-sections, and also @kristap31.
Are you still under care and/or restrictions related to this event?
I'm so sorry for all you've had to go through and the life of your son. I had a very similar experience. I had an emergent c-section at 33 weeks. I had a slow bleed within my uterus for about 10 hours after the next day and ended up in DIC as well. I spent about 2 days in the ICU and a week in the hospital. I also had the brain fog, weakness (I was released with a walker and wheelchair for longer walks), speech problems, nausea, balance issues, and some bladder and bowel symptoms. I actually came home so confused about just daily tasks and felt really out of it.
I'm a little over two years out now, and the brain fog and speech has gotten much better. I don't remember things like I've used too though, but it's gotten much better. The one thing I wish I would have fought for is more therapies when I got home, specifically pelvic floor and physical therapy for the overall weakness. I ended up tearing my acl the following year, because of the weakness. Did you have to get a hysterectomy? I did and was told afterwards that there might have been a chance that my ovaries didn't get enough blood flow and wouldn't be working correctly, so maybe see about checking your hormone levels. I did end up having both ovaries removed within the two years. I ended up developing endometriosis after as well and an abdominal wall endometrioma, which will be my fifth and hopefully final surgery since all of this.
I did have some mood swings directly after and questioned my hormone levels a bit, but was also diagnosed with PTSD. You've been through a life altering trauma, and at the beginning it seems like you'll never be able to move on, but I promise it does get easier. Find a good therapist, be patient with yourself, give yourself the grace and rest you need for your body to recover, and don't be afraid to ask questions and advocate for yourself.
I had a doctor tell me for the first year and a half that I should be happy with my quality of life, because at least I'm alive. I found another doctor and they called them quality of life issues, and have helped me so very much. I'd push for physical therapy and pelvic floor therapy as well that would have saved me so much trouble.
I'm sending you so much love, and please feel free to reach out if you need someone to vent to.
I read your post several weeks ago and have been thinking about you ever since. Sorry it has taken me so long to respond! You have been through so much. I can relate to a lot of your story, and even though my DIC/emergency hysterectomy happened four years ago, reading your story gives me chills. I still haven't worked through everything that happened to me, and am hoping to see a trauma therapist soon.
I also lost a baby boy to stillbirth at 35 weeks. His death has been the most difficult grief to carry. However, I have found support in dealing with his death and grief.
My postpartum hemorrhage and emergency hysterectomy has been a different story as far as support and awareness. Hardly anyone (besides my husband and the people in this group) realizes the implications of what happened in those hours I was bleeding to death and the devastating after effects. I have looked for resources at multiple hospitals. I called the OBGYN who performed my hysterectomy several weeks after the surgery because I needed help, and she asked if I had started my period yet!!! After she just cut out my uterus and reproductive system!! That didn't give me a lot of confidence. I went to a large hospital in Denver looking for resources…the doctor acted is if she had no idea why I was there. It really feels like if you are unable to get pregnant, there is no place for you in an OBGYN office.
After years, I finally realized that if anyone is going to help me heal, it has to be me. I recently started to feel strong enough emotionally and mentally to seek help. Don't let doctors or medical assistants make you feel crazy. You know what you are going through and what the reality is. They are the ignorant ones if they are not taking your health seriously. All that to say, help will probably not come to you. You have to seek it, be persistent, keep going to doctors until you find one who will try things to help. I have been so frustrated and hurt by medical professionals who have not taken my emergency hysterectomy and the after effects seriously. The only way to bring about change though is if we speak out, advocate for ourselves, and raise awareness. Do you have support now? I know you said you are seeing a therapist–do you have friends and family helping out?
On another note, though I personally did not have kidney failure or stay in the ICU due to my PPH and DIC, my son went into multi-organ failure as a six-month-old and was in the PICU five weeks…he had multiple surgeries, his kidneys shutdown completely for weeks, and he had a blood clot which permanently damaged his left leg.
I am happy to talk about anything if you would like. I can give you my email address if you would like to talk more. Sending you lots of strength!
I would love to chat more. With school starting things have been busy here and I haven't been able to write any replies to my post yet…..
I am still under care….some restrictions but nothing too crazy as full bed rest thankfully.
I'm sorry I took so long to reply.
Thank you. Could we chat via email? I am struggling less with my quality of life now than I first did when I came home.. each day is a little better….but then there are days that I just want to stay in bed……
Thank you for all your kind words.. I'm sorry to hear of what you went thru… you're a strong a** woman!