Anyone had disseminated intravascular coagulation (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 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.

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.

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 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.

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.

Hi Samson, welcome to Mayo Clinic Connect. I'm sure Carol @cb772 will be delighted to meet you.

While I'm happy you found us, I'm sorry that you are dealing with so many debilitating issues related to disseminated intravascular coagulation (DIC). How long ago was your surgery and symptoms started? Have they been able to determine the underlying cause and treat it?

Hi There, I have personally experienced DIC after a routine surgery. I have ongoing health issues that have significantly affected my health. I used to be so active and strong, I had a motorcycle I drove, I was a kiteboarder, hiked, sailed, I also work in healthcare. Im no longer able to work, I have issues concentrating, word recall issues, severe fatigue, chronic tachycardia with a HR avg. 120-140/min. I get shortness of breath after just a few minutes of activity. I bruise so easily now, my veins are terrible, many are destroyed, tiny spider veins. I was researching long term affects of DIC ad came upon your message here. I cant seem to find any research for my question as of yet.

Kelly: thank you so much for your informative post. I will respond in a little while, but have a telemedicine appt in a few minutes. Carol

Hello @cb772. I read your post and wanted to respond as I totally understand your battle. I have personal experience with disseminated intravascular coagulation (DIC) from my father who had prostate cancer that moved to his bones. He didn’t experience any specific onset symptoms, as we found out after a fall caused a hematoma in his brain. The cancer in his bones affected his ability to produce the blood cells needed for clotting. Although the surgery was successful, it was dicey for a while as the surgeon could not guarantee the bleeding would stop. They gave him many transfusions of whole blood and plasma to help clot any bleeding and give him energy back. The cancer was the underlying cause for his DIC, which he underwent treatment for and helped the DIC.

You mentioned back surgery and other challenges you have been through. Can you tell me a little more? Did you receive any transfusions or medications for DIC? What does your provider say the underlining cause of the DIC is?

I was able to find the following information that may help you, when I read it- it all sounded very true to our experience:

Disseminated intravascular coagulation (DIC): https://medlineplus.gov/ency/article/000573.htm#:~:text=The%20underlying%20cause%20is%20usually,liver%2C%20brain%2C%20or%20kidneys.
Disseminated intravascular coagulation (DIC) is a serious disorder in which the proteins that control blood clotting become overactive.

Causes
When you are injured, proteins in the blood that form blood clots travel to the injury site to help stop bleeding. If these proteins become abnormally active throughout the body, you could develop DIC. The underlying cause is usually due to inflammation, infection, or cancer.
In some cases of DIC, small blood clots form in the blood vessels. Some of these clots can clog the vessels and cut off the normal blood supply to organs such as the liver, brain, or kidneys. Lack of blood flow can damage and cause major injury to the organs.
In other cases of DIC, the clotting proteins in your blood are consumed. When this happens, you may have a high risk of serious bleeding, even from a minor injury or without injury. You may also have bleeding that starts spontaneously (on its own). The disease can also cause your healthy red blood cells to fragment and break up when they travel through the small vessels that are filled with clots.

Risk factors for DIC include:
• Blood transfusion reaction
• Cancer, especially certain types of leukemia
• Inflammation of the pancreas (pancreatitis)
• Infection in the blood, especially by bacteria or fungus
• Liver disease
• Pregnancy complications (such as placenta that is left behind after delivery)
• Recent surgery or anesthesia
• Severe tissue injury (as in burns and head injury)
• Large hemangioma (a blood vessel that is not formed properly)

Symptoms
Symptoms of DIC may include any of the following:
• Bleeding, from many sites in the body
• Blood clots
• Bruising
• Drop in blood pressure
• Shortness of breath
• Confusion, memory loss or change of behavior
• Fever

Exams and Tests
You may have any of the following tests:
• Complete blood count with blood smear exam
• Partial thromboplastin time (PTT)
• Prothrombin time (PT)
• Fibrinogen blood test
• D-dimer

Treatment
There is no specific treatment for DIC. The goal is to determine and treat the underlying cause of DIC.
Supportive treatments may include:
• Plasma transfusions to replace blood clotting factors if a large amount of bleeding is occurring.
• Blood thinner medicine (heparin) to prevent blood clotting if a large amount of clotting is occurring.

Outlook (Prognosis)
Outcome depends on what is causing the disorder. DIC can be life threatening.
Possible Complications
• Complications from DIC may include:
• Bleeding
• Lack of blood flow to the arms, legs, or vital organs
• Stroke

When to Contact a Medical Professional
Go to the emergency room or call 911 if you have bleeding that does not stop.

Prevention
Get prompt treatment for conditions known to bring on this disorder.

I’m looking forward to reading more of your posts,

Kelly