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?
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Thank you so much for reaching out. I received over 50 units and was in surgery for about 5 hours before having to be airlifted to another hospital. I spent two days in the ICU and then a week recovering on the OB floor. Actively dying sounds about right! I laid in the hospital slowly dying for hours before, such a helpless feeling.
I definitely understand what you say about grieving. I feel like I've been slowly making my way through all the stages of grief.
I'd love to hear what you've found to help you. It's great to find other survivors to talk with.
Thank you again for reaching out.
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.
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, 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!
Oh, @kristap31. Those comments are so hurtful and completely lack understanding.
I really appreciate your popping in briefly to respond to @kbreder.
Krista, what type of surgery did your son have to have? How is he doing? How are you doing?
I think so. I'm going to the pelvic pain clinic and they recommended this therapy along with physical therapy. I'm willing to try anything at this point!
I completely understand you're frustration with those statements. I contacted May0 because i couldn't get andwers local. Whenever I shared my concerns about my symptoms I was always told "if that'ds the only thing we have to worry about after all you've been through, then we should be happy." Dr. Cope called them "quality of life issues" and I had never felt so heard in my life! Finally felt like someone was willing to listen and explore options for a better life. Surviving near death doesn't mean we have to give up a quality of life. I truly hope you find someone to listen to you.
I hope your son's surgery went well and you get some relief from the stress soon.
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.
Welcome @suzieq612. Your experience DIC after C-section sounds remarkably similar to @kbreder's.
May I ask how long ago this happened? What triggers your PTSD?