Krystan Simpson Helms | CaringBridge

Krystan Simpson Helms

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My story began on Friday, May 5, 2017 when I woke up with a swollen lymph-node in my neck.  Donny put a warm compress on it to try and bring the swelling down and it help some.  As the weekend progressed I began to feel worse and spiked a fever of 104.5.  On Monday, May 8th,  Donny took me to the doctor.  They did blood work and I was told I had a bacterial infection and came home with an antibiotic prescription.  For the next couple of days I stayed in bed hurting all over, spiking and breaking a fever, and I was extremely tired. On Thursday, May 11th,  my temp went slightly below normal and my muscles hurt so much I could not even stand on my feet because of the pain. Donny knew the low temp was now a sign of sepsis.  Donny insisted we head to the ER and we ended up in Waxhaw. From there I was air lifted to CMC Main in Charlotte.  My last instructions to Donny as I'm being placed in the chopper was for him to get his phone out and take a picture! Can you believe he wouldn't do that?! I also wanted to make sure my make up bag was on its way to Charlotte too!! This was my last time awake for the time being. 

Upon arrival at CMC Main, I was sedated and put on a ventilator. My lactic number was over 9!! I was severely septic. That night I was in multi system failure. They struggled to keep my blood pressure up, my kidneys weren't functioning, my heart rate was too high. I was quickly loosing platelets and not reproducing any more. The infection was wreaking havoc in my body.  They placed me on multiple, powerful antibiotics.

They proceeded to begin a battery of tests including  a spinal tap, a bone marrow test, a cardiac ultrasound,  multiple scans and labs. As a result, the docs determined that I have a very rare blood disorder called HLH (NOT CANCER) which depletes the platelets in your bone marrow.  Many of my other tests came back negative. I continued to have elevated lactic levels and fever. By Sunday, May 14th,  BP back to normal with minimal meds, platelets were still low but up some, kidneys were beginning to function and a CT of the brain Saturday night (13th) to check on swelling came back normal. Doctor's prognosis was slightly better but still very concerned about the platelet issue.

During the day Sunday, I had a MRI, which showed little small blood clots through out my brain.  They weaned me off sedation to check my neurological status.  I woke up and started having a seizure.  I was sedated again to be reassessed in the morning.   On Monday morning, May 15th, the Neurologist explained that they would treat the brain the same way they were treating the bone marrow, with steroids and a form of chemo. The brain treatment would go through a lumbar puncture into my spinal fluid.   

On Tuesday, May 16th, my platelets were low again so I was given more platelets and I received a second dose of chemo/steroids for the bone marrow treatment.  Because I was so swollen they gave me a diuretic to try and pull some of the fluid off faster.  Also taking me off sedation, to try and wake me up.  I never woke up, but had several seizures smaller than the first one and was put on seizure medication. They did Dialysis to try to relieve pressure off my brain.  Tuesday night I had a run of v tach {A condition in which the lower chambers of the heart (ventricles) beat very quickly.} 

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