Amy Staples

Survivor

I don’t quite know how to tell my story as it is a complicated one. I went on dialysis in 2002. Dialysis accesses consist of fistulas (vein and artery surgically connected), a graft (artificial vein sewn to an artery), a central venous line tunneled into the chest, or a catheter put into the belly (peritoneum). I had gone through several chest catheters and fistulas and had a graft in my arm that was healing. At any rate, I ended up with sepsis.

By the time I presented in ER my heart rate was 130, blood pressure was 50/30, oxygen saturations were in the 50s and I had a fever of 104. I had hallucinations, chills, fever, nausea, vomiting, diarrhea, fatigue, and confusion, among many more symptoms. Over the course of 2 months in the hospital of having surgeries, hemolysis, 11 units of blood and 7 units of FFP, procedures (TEE, bone marrow biopsy, multiple nuclear medicine tests, gallbladder removal and finally removal of arm graft), losing 50 lbs., and basically having to learn how to walk again I was sent home. It was 6-month recovery.

I had to walk with a cane and, 2 months after the infection, I lost nearly all my hair. This was in 2005. I returned to hospital in May of 2008 with symptoms resembling sepsis, but I also had a horrible upper respiratory infection (URI) with near constant coughing. I was treated with vancomycin. Once the cultures came back clean they decided to send me home.

I returned 3 weeks later with worsened symptoms and was admitted with sepsis, pneumonia, c-diff and pleurisy. (Sepsis and PneumoniaSepsis and C. Diff) This was a 3-week stay and several months of recovery. In 2010 I presented again with sepsis and, after 2-week stay, was able to return home. Again in 2010 after a procedure, I acquired sepsis (by staff) and had another 2-week stay. This was accompanied by congestive heart failure of 20% (resolved after several months). In May of 2012, I was again hospitalized with sepsis: 105.6 fever, nausea, diarrhea, hallucinations etc., but only 6-day stay with another 8 weeks of at home IV antibiotics.

In all but 1 episode of sepsis, I had been told by nephrologists (because of dialysis) that I “just had the crud.” I still suffer from the occasional full-body muscle aches, joint pain, insomnia, foggy brain, loss of mental focus, among other symptoms. I am beyond lucky to be alive. How do I give clues to help others’ voices be heard to receive the treatment they need to survive?

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