Anyone had disseminated intravascular coagulation (DIC)?

@colleenyoung, I posed my original question in the Blood Disorder and ICU Groups but didn't receive any responses so, since it's contributed to my chronic pain, I posted it in the Chronic pain group. As for long-term issues, I initially couldn't read & comprehend and I wasn't able to type. Prior to DIC, I was an avid reader and typed 120 words per minute. I started out reading short magazine stories, went up to children's books & eventually to the books I normally read. To this day though, I often can't recall the story line and have to re-read a few chapters before resuming to read. I was a paralegal/legal assistant so these symptoms, along with being deaf in my left ear, we're distressing. Over the years since 2007, my symptoms have worsened. For example, I often stutter (I was formerly a public speaker) ; I have more & more frequently episodes of what looks like seizures that turn my legs to jelly & now my whole body jerks uncontrollably and I frequently fall resulting in injuries; I used to be witty but now I often can't think quickly enough to respond; I have severe anxiety and depression and can't deal with it properly. If not for faith in God, I would not continue to exist. As it is, I don't live life, I exist in my recliner, smoke cigarettes & watch TV. I have other long term symptoms like passing out, zoning out, irritability, etc.

Sorry for your long struggle w DIC, especially late effect of total kidney failure! Pulmonary embolism, heart issue serious also. I never heard of this until 12/22/23, my niece thought she had flu & went to urgent clinic:
“My 45-y/o niece ended up with DIC after walk-in clinic sent her by ambulance to hospital for septic shock (she thought she had flu); but had strept pneumonia. She went to ICU quickly, her fingers were turning purple. A clot in Rt wrist found by IV site. Surgery to remove clot. Then surgery to remove hand below wrist, so she can have more movement with a hand prosthesis. Now watching purple toes for demarcation. She’s on IV Heparin drip & vasopressors to live & preserve her major organs; at the expense of her extremities. (They found out her spleen was shriveled or small or something, so the pneumonia was bad). She is in a Level I trauma hospital, but I wonder if that is the right place? I read Cleveland Clinic is good with DIC. But being so serious, hard to transfer at this point? It’s all so confusing for this rare DIC. Podiatrist was hopeful for skin on toes. But ortho unsympathetically said amputate above toes. Shocking & sad, so young.”
Now it seems to me, that you still have your extremities, but your major organs were severely affected. Whereas, she is treating to preserve organs at expense of digits. Seems a big difference in Drs’ treatments!

Anyone who has suffered DIC, I would love to hear from.

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 had DIC in 1984 after the birth of my first child. He was born on Saturday and on Sunday I was so swollen I looked as if I had not had the baby yet. I also was having trouble breathing. Next came ICU, blood draws every few hours, nurses holding pressure packs on my episiotomy and on my arms where they would draw blood trying to stop the bleeding. I was out of it most of the time, so I really don't know how long I was in ICU. I was given Heparin at the time. Fast forward to 1995. I had a DVT in my right leg. Was diagnosed with Protein C & Protein S deficiency. Was put on Heparin and then Warfarin. I am still on Warfarin and will be for the rest of my life. In 2005 I was in a car wreck and then about two years later, I was diagnosed with Fibromyalgia. I do have pain, but not the debilitating pain some speak of with FM. My problem has always been mainly extreme fatigue, depression, and cognitive issues. In 2012 I had a hysterectomy due to another bleeding problem. Around that same time, I also was diagnosed with a Factor II mutation. My fatigue has remained about the same over the years, sometimes better, sometimes worse. The depression has worsened and the cognitive issues have worsened over the last 4 - 5 years. After reading some of the posts, I am now wondering if this has more to do with the DIC and other blood disorders than with FM since I don't have the extreme pain associated w/ FM. I have been tested for all sorts of autoimmune diseases as well as MS and the doctors say "oh, well, we can't find anything wrong, so it must just be the FM getting worse." Any thoughts? I would really appreciate any thoughts anyone may have.

I had DIC in 1984 after the birth of my first child. He was born on Saturday and on Sunday I was so swollen I looked as if I had not had the baby yet. I also was having trouble breathing. Next came ICU, blood draws every few hours, nurses holding pressure packs on my episiotomy and on my arms where they would draw blood trying to stop the bleeding. I was out of it most of the time, so I really don't know how long I was in ICU. I was given Heparin at the time. Fast forward to 1995. I had a DVT in my right leg. Was diagnosed with Protein C & Protein S deficiency. Was put on Heparin and then Warfarin. I am still on Warfarin and will be for the rest of my life. In 2005 I was in a car wreck and then about two years later, I was diagnosed with Fibromyalgia. I do have pain, but not the debilitating pain some speak of with FM. My problem has always been mainly extreme fatigue, depression, and cognitive issues. In 2012 I had a hysterectomy due to another bleeding problem. Around that same time, I also was diagnosed with a Factor II mutation. My fatigue has remained about the same over the years, sometimes better, sometimes worse. The depression has worsened and the cognitive issues have worsened over the last 4 - 5 years. After reading some of the posts, I am now wondering if this has more to do with the DIC and other blood disorders than with FM since I don't have the extreme pain associated w/ FM. I have been tested for all sorts of autoimmune diseases as well as MS and the doctors say "oh, well, we can't find anything wrong, so it must just be the FM getting worse." Any thoughts? I would really appreciate any thoughts anyone may have.

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.

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?