Anyone had disseminated intravascular coagulation (DIC)?

Hi Colleen, it was 2016 after routine surgery. When I woke in recovery I knew there was something not right, I had tachycardia, low B/P, I felt dizzy and short of breath. I wasnt brought back to the OR until 8 hours later, when my B/P dropped to 60/35, and I asked the nurse to call a CODE as I was clinically dead. 13 hours of surgery later, I woke in the ICU, and could not believe I was alive and survived.
Since then, Ive had shortness of breath, fatigue, weakness, mental fogginess, word recall issues, anxiety, bouts of depression, short term memory loss. I cant do the things I could before, had to sell my motorbike, cant kiteboard anymore, Ive recently left my profession.
Ive been looking for any research on long term effects of DIC on people, what vascular damage does DIC leave, what does the microvascular and macrovascular damage cause in the long term, what are the risks of getting DIC again if my body perceives another episode of trauma, how do I know if I have permanent cardiac damage, vascular damage, respiratory damage and also where does Covid 19 fit into the vascular effects of Covid 19 and people who have had DIC and the vascular damage from DIC. I have so many questions that i cannot find answers. Thank you for the opportunity to talk about this.

i had DIC during the delivery of my first child in 2002. & was induced into a coma.
i believe i have cognitive repercussions but no one believes me.

Welcome @rnpassarelli, has anyone ever mention post-intensive care syndrome to you? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings. Do you think that the cognitive issues might be related to your time in ICU?

I've been an athlete and an outdoorsman my whole life, and I still continue to pursue the things I love, but there are a number of hurdles that I have to jump through to live anything resembling a normal life at this point. So here's my DIC story:
I was bitten by a dog in November of 2020. My first trip to the urgent care got me a surface irrigation and a dressing change. By day 3 I started having the usual flu-like symptoms of joint pain, general malaise and some stomach upset. That night I soaked the sheets pretty thoroughly a couple of times but I wasn't yet running a fever. Day 4 I had uncontrolled vomiting, diahorrea, high fever and diffuse pain. This trip to the urgent care saw me admitted pretty quickly. My nose was pretty well black, and my fingers and toes were starting to look like they had frostbite; which I was familiar with because when you do alpine climbing for long enough someone in your group loses a toe.
The pathology lab had some trouble with my blood cultures. It was obvious that I had an infection because my WBC was through the roof and I was clearly in septic shock. It turns out my bacterial load was crashing the automated culture readers. When a path lab tech finally actually looked at my slide he described it to me as "being more bacteria than blood". I have a medical background, and at this point I'm a combination of firing on all cylinders and completely delirious from the damage being done to basically everything in my body. So I assure my wife I'm going to be fine, I tell the imaginary goth viking metal band in the waiting room to shut up and let me sleep, I ignore the homeless man just trying to get in to use the bathroom and arguing with the security guard and at some point they put me on life support.
I woke up five days later feeling the strangest combination of better and worse. Being awake while intubated is a very odd experience. My fingertips were all full of blood clots so I couldn't use a cell phone well, so I managed to sign language myself a little whiteboard so I could communicate with everyone. I had gained 50 pounds which made me look a bit like the Michelin man and my feet were still terribly black, but my O2 sats were improving and despite my last echo showing a heart that was more Swiss cheese than heart I was still kicking. The next day I was extubated. My pulmonologist had made a crack about South Park the day before, so my first words were "You bastard!". He appreciated it. They moved me up to cardiac care that day.
The next 3 weeks were pretty much a litany of pain. My kidneys completely ceased to function: something I continue to deal with today. Heart, liver, brain, skin. Pretty much everything was shot. Part of the reason I decided to reach out today is because I have a blood clot working it's way out of my finger now 16 months later. My nose, ears and fingers took about a week. My nose still looks a little bit like I was a boxer for too long, but that's not too far from the case. My feet recovered enough to walk with a walker by the second week. I was still pretty much maxed on the pain meds, but at least I was getting around. The toes were going to go... "auto-amputate" they call it. A nicer way to say bits of me were going to intermittently fall off for the next couple of weeks.
3 days after my release I threw a clot and ended up with a pulmonary embolism. Right back to the icu for me. Turns out my WBC was still high so they took the opportunity to use both arms for infusion pumps again. It's a tough time being in a hospital bed with IVs in both arms. Now with my daily rounds of antibiotics I'm on a constant stream of blood thinners. Thanksgiving that year was a turkey dinner cobbled up from the cafeteria menu, but at least they played a Band of Brothers marathon on the History Channel so I was entertained.
Once I was loaded up with heparin they sent me home with the pill version and it was up to my team of specialists to keep me going while off-site. My liver managed to recover right away. It took me 3-4 months to get back to anything resembling physically active. They took my toes off in April which I think helped, as I felt lugging around a bunch of dead appendages wasn't doing me any good. I didn't shake the combination of PTSD and depression caused by the sedation and the hospital stays until probably month 6, and I'm living with the life long consequence of total renal failure.

TL:DR Bit by a dog, went in to septic shock. Shorter term physical recovery is possible. The mental recovery can take months or even years.

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.

Welcome, @kbreder. I'd like to bring @amandacgrow and @kristap31 into this discussion. While they may not have experience with disseminated intravascular coagulation (DIC), they have experience with serious illness at the birth of a child. I think they will also related to the PTSD feelings. Kbreder, were you in ICU too?

I'm so sorry to hear of the complications you've had. Did your healthcare team find the underlying condition that caused you to develop DIC? Are you in the care of specialists who understand DIC? And how's that little baby of yours who is almost 2 years old?

I was in the ICU for a couple of days and then released to the OB floor to recover for a week. I was released from the hospital with only the typical 6 week follow up appointment, so I'm not in the care of any specialist. I am speaking with Dr. Cope from Mayo this week though, so I'm hoping to get more answers. As for the underlying issue, im not sure. I had a previa, and some other risk factors for hemorrhage. The hemorrhage was a slow bleed within my uterus. Ive been told it was because my uterus didn't contract like it should have. I started showing symptoms about 10 hours after birth, but my bleeding wasnt discovered for another 6 hours, so i think its just because i was bleeding for so long.

My baby is doing amazing though he's a perfectly healthy baby. You can't even tell he was born at 33 weeks, he's at the top of the growth chart even! Definitely blessed in that area!

I'm excited that you're consulting with Dr. Cope this week. I hope she is able to fill in some gaps in what is going on and what to do next.

You've been through a lot. I wonder if you've ever heard of post intensive care syndrome (PICS). It sounds like you're experiencing PICS symptoms along with your physical issues. You can connect with others who have an ICU experience and PICS in the Intensive Care (ICU) support group here: https://connect.mayoclinic.org/group/intensive-care-icu/

I think you'll resonate with this discussion and others:
- Post-Intensive Care Syndrome (PICS) - Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

I'm so happy to hear about your blessing and that he is growing off the charts. Please do let me know how your appointment goes.

I've heard of PICS, but I hadn't looked into it much. After looking I think you're right some of my symptoms definitely do fit that. I'll take a look at those links as well. Thank you!

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