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DiscussionAnyone had disseminated intravascular coagulation (DIC)?
Blood Cancers & Disorders | Last Active: Mar 2 4:33pm | Replies (45)Comment receiving replies
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.
Replies to "I've been an athlete and an outdoorsman my whole life, and I still continue to pursue..."
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!