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Aug 2, 2018 Latest post:
Aug 18, 2018
On Saturday, June 30 Angie was taken to the ER after having a sudden onset of severe nerve pain in her left leg she was admitted overnight because her electrolytes were out of balance. She was sent home to follow up with her primary care physician. On July 1, Sunday evening her right foot felt like it tingling or asleep. Monday morning, July 2, Jim took her into her Dr. She walked out of our house and when she got to the Dr's office she could no longer feel her foot. She was scheduled the next day for a nerve conduction study. We brought her into the office in a wheelchair, she became very nauseated, dizzy and began to vomit.
We took her back to ER with terrible pain. She was admitted and over the next few days, she had numerous tests including the EMG, lumbar puncture, to name a few. She experienced excruciating pain. Pain control was difficult due to her kidney failure and dialysis. After numerous tests, it was determined that she had a very rare, very painful condition called Diabetic Amyotrophy. It is not something that usually affects Type1 Diabetics and someone as young as she is.
After a week in the hospital, she was transferred to inpatient rehab. She worked so hard 3 hours a day six days a week. She was learning to walk with a brace on her foot and learning to navigate stairs. We are so proud of her and the strength she showed. During this time she complained of her legs feeling very bruised and painful. She had a spot on her left hip that her Dr had treated as a possible infection from a scratch. The area became much larger and one developed on her other hip and buttock.
She was scheduled to be discharged to our house on Wednesday, July 25, but during one of her therapy sessions, her blood pressure dropped when she stood up. Her Hgb was very low at 6.4 so they gave her two units of blood.
On Thursday, July 26, the NP saw her hips and consulted Derm and Nephrology. They were concerned it could be a very rare complication called Calciphylaxis. It is s very very serious disease and extremely painful. She was transferred back to the hospital. They did a biopsy on Friday, July 27, to confirm.
It was determined to switch her off Peritoneal Dialysis to Hemo Dialysis, an intensive dialysis (she is getting dialysis 3.5 hours every day for the next few weeks). Along with an IV treatment three times a week. Keeping the wounds free from infection is a very important part of the treatment. Pain control has been very very difficult and the pain team has been working with her.
On the night of Saturday, July 28, her left foot began to tingle and now she is unable to move or feel either of her feet. We are hearing that with Physical Therapy she may in time, get some or all of the feeling back.
Angie has been so brave and worked so hard. The Calciphylaxis is the greatest concern right now, along with pain control. It is hard to rest and heal when you are in so much pain. She received another two units of blood today trying to build her up. She is fighting the fight of her life and is the bravest, strongest person I know.
Please encourage Angie to keep that fighting spirit and pray for recovery and pain relief for her. She desperately wants to go home and we are working toward getting her to our house.