Anyone had disseminated intravascular coagulation (DIC)?

Hi @kbreder ,

My name is Amanda. I am so glad you found this group. I hope you will feel a sense of support and connection here.

I will share a little bit of my story. My son was born via C-Section in February 2018. Shortly after his birth, my blood pressure dropped rapidly and I was rushed to the Shock Trauma ICU. I was experiencing DIC, most likely from a rare condition known as Amniotic Fluid Embolism. Over the next four hours, I was in surgery for an emergency hysterectomy and blood transfusions of more than 75 units of blood. A social worker was sent out to tell my family I was "actively dying". I survived, but had a difficult road to recovery. I was in a coma for seven days, then in the ICU for several more weeks.

I can very much relate to your words, "life has been so very different". A mentor for me in this group helped me realize that life altering medical experiences like ours often necessitate a need for grieving. It seems strange to be grieving since no one has died, but we must acknowledge the losses and changes we have experienced.

Understanding the nature of PICS and Post Traumatic Stress has also been important in my recovery.

If you are interested, I'd be happy to share more that has helped me, but I don't want to overwhelm.

Best wishes to you, my new survivor friend.

Amanda Grow

It is so great to connect @kbreder
I am so happy you survived and my heart is with you as you navigate your healing.

I will share a few things that helped my, but want to include a favorite quote by Rachel Naomi Remen before I do:

“Some people heal because they have work to do. Others heal because they have been released from their work and the pressures and expectations that others place on them. Some people need music, others need silence, some need people around them, others heal alone. Many different things can activate and strengthen the life force in us. For each of us there are conditions of healing that are as unique as a fingerprint.”

Healing is so unique. Your healing fingerprint will be unique to you. I want to share my thoughts in that context. What has seemed to help me might not be the right fit for you, but I share in case it offers some ideas in your own quest for healing.

-Talk therapy was a critical element in my healing. I needed time to step back from the hustle of the life that I thought I needed to "bounce back" to in order to process all that had happened to me physically, mentally, and emotionally. It was not easy to find a therapist, and I ended up with one who specialized in postpartum depression. She was a wonderful guide, but concluded that what I was suffering from was not postpartum depression. It was helpful for me to realize this, because it helped me look deeper into PICS. Knowing more about Post Traumatic Stress and Depression helped me feel that I was not alone in my suffering; it helped to know that my experiences were fairly common among ICU survivors. If talk therapy seems like it might be helpful for you, I would just say don't be afraid to keep looking if a therapist is not the right fit. I have used Better Help online counseling as well as traditional in person counseling and even life coaches. Keep looking until you find someone who can help you on your journey.

-Nutrition has become a critical element to my improved functioning. Like you, I received donated blood. I also had countless drugs administered to me during my hospital stay and in the months following. I also had a hysterectomy and became stressed about all of the hormone changes. I have had so many times when I felt like a stranger in my own body. About 2 years ago, I heard a podcast by a nutrition coach and learned the timeline for how the cells in our bodies regenerate. I had the thought that I wanted to start over again. I wanted to give my body the nutrients it needed to rebuild. I changed my diet gradually, and tried to pay close attention to how foods made me feel. It was a SLOW, gradual process...but I am amazed at how much better I feel after I forced myself to slow down and focus on nourishing my body.

-Of course, sleep. Sleep is so tricky with a little one, but for me sleep has become a non-negotiable in my functioning. For years of my life, I cut corners on sleep. I don't do this anymore...I prioritize rest. I allow myself down time so I don't get overwhelmed or overstimulated. If I miss sleep at night, I let my little boy watch a movie so I can take a nap if I need to (and I don't let myself feel guilty about it!)

-Consider blood tests to check iron levels. I discovered that my iron levels were way too high. One of my post ICU doctors mentioned that transfused blood is very high in iron, and I have also heard that iron can be off in women who have experienced hysterectomies because we don't bleed each month. This is a rare thing that might just be unique to me, but I thought I'd mention it because we have some significant similarities with blood transfusions and a hysterectomy.

-Give yourself space to grieve and process. Shortly after my son's birth and my time in the hospital, I thought "this will be one chapter in my life, but then I'll get back to the story I was writing before." I was very wrong. That one chapter (near death experience/ICU stay) has changed all of the chapters after it. This was painful to accept for a long time. I can see now how the experience has transformed me into something new, and I have come to find peace and even joy in this new life I have.

My best wishes to you Kala. May you have the strength you need to move forward in healing.

Amanda Grow
Kaysville, Utah

Amanda,
Thank you so much for all of those ideas! I'm noticing trends in my diet that seem to cause more abdominal pains than others. I never feel like I get enough sleep,and have moments where it seems like I cannot keep my eyes open for anything. I'm just constantly tired. I've never had an issue with my iron though. I donate blood or platelets often so I had been having it checked about once a month at my donation appointments, it was always high enough to donate, but I don't know if it's ever been too high. That's interesting though.

I am in therapy being treated for PTSD currently, but when I go to Mayo I'm going to go to a cognitive behavioral therapy for pain management.
I appreciate you taking the time to share with me!
Kala

Hello everyone, sorry for the delay in response. I have not had a chance to respond yet as my little boy has recently had surgery and life has been a bit crazy! I will write longer when I get a chance, meanwhile, I am so sorry for everything you have been through. I experienced a PPH one week after giving birth. It was completely unexpected and I did not even know such things could happen. I woke up from surgery with my uterus, tubes, and hopes for having a "normal" life and more children...gone. It was and still is devastating. I have not received any local support even though I have reached out for it with my OBGYN and the hospital. People act as if it is "no big deal" and always say dismissive things such as, "At least you have..." I feel those comments actually make things worse and make me feel crazy for having such a hard time with this! Anyways, I will write more later. For now, I hope that you can find people who will let you process and work through the sudden loss of everything that goes with an emergency hysterectomy. Sending lots of love and strength!

Kala, are you referring to the Pain Rehabilitation program when you siad cognitive behavioral therapy for pain management?

Hello everyone, sorry for the delay in response. I have not had a chance to respond yet as my little boy has recently had surgery and life has been a bit crazy! I will write longer when I get a chance, meanwhile, I am so sorry for everything you have been through. I experienced a PPH one week after giving birth. It was completely unexpected and I did not even know such things could happen. I woke up from surgery with my uterus, tubes, and hopes for having a "normal" life and more children...gone. It was and still is devastating. I have not received any local support even though I have reached out for it with my OBGYN and the hospital. People act as if it is "no big deal" and always say dismissive things such as, "At least you have..." I feel those comments actually make things worse and make me feel crazy for having such a hard time with this! Anyways, I will write more later. For now, I hope that you can find people who will let you process and work through the sudden loss of everything that goes with an emergency hysterectomy. Sending lots of love and strength!

I developed DIC after an emergent c-section the summer of 2020. It was discovered about 16 hours after my c-section that I had been bleeding within my uterus all day. Throughout the day I lost 75% of my blood volume. I had an emergency hysterectomy, but they ran out of blood so they packed my wound and put me on a helicopter to another hospital. I left with a walker and barely able to hold my 5 pound baby or shower myself. Also had serious stutter and memory problems, I still struggle a bit with both and have PTSD. I've had to have three other surgeries since. I ended up tearing my acl the following summer due to weakness in my legs (I didn't have any therapies when I came home from the hospital.) I had to end up having both ovaries removed by january this year. All of my abdominal organs are completely stuck together and full of adhesions, so I have issues with abdominal pain, digestion problems, fatigue, and back pain. Life has been so very different since and I've been searching for anyone who has had long term symptoms of their DIC.

Wow, I too developed DIC after a c-section. Mine wasn't caught as early though. I began having pain while at home from the hospital on day 3. It hurt to sit and by day 8 I couldnt urinate. I stood up and started bleeding drastically. I got to the the ER and went into shock and collapsed from blood loss. I too had to have an emergency hysterectomy as they couldn't stop the uterine bleed. I received 4 blood transfusions and ended up in the ICU for 4 days before going to the peds floor (so family could bring my baby to see me). I developed a painful post-op ileus due to the surgery. I had my tubes, uterus and cervix removed and required iron transfusions. I was weak for a while but as far as fatigue, brain fog, memory problems etc. I have had that for years with my autoimmine diseases so I dont notice it as new. I too have been diagnosed with PTSD from the event. It seems like no one understands it, nor asks or allows me to talk about it. Like it was too scary for them that I almost died.