Crystina’s story begins in 2004 when she was six years old. One afternoon after school, her babysitter called me and said she was crying and claiming her leg hurt. When I picked her up, I didn’t notice any bruises but she refused to walk on it. That evening the pain was so severe that we decided to take her to the ER. At our local ER, the only determination they made was “undetermined” and wanted to admit her for observation. I declined and signed her out against medical advice (AMA). We went home and I was going to take her to her primary care physician (PCP) the following morning. However, that night we were awakened when our second child (age 2) was screaming and tugging on her ear. We decided to take them both to the next closest ER. Once at this ER, Crystina was diagnosed with Henoch-Schonlein Purpura (HSP). We were told by the many doctors and nurses who stopped by to see “the girl with HSP” that they had only ever heard about the condition but had never seen anyone with it. At a follow up appointment with her PCP, we were given an appointment to visit the pediatric nephrologist at the children’s hospital because HSP could affect the kidneys. At that appointment she was given a clean bill of health and told that her kidneys were fine. We were not told that any follow up was required. Over the years, she had several kidney infections resulting in her being prescribed antibiotics and sent home. One such kidney infection even put her in the children’s hospital for a few days.
In November 2016, she finally relented and let us take her to the ER after not feeling well for several weeks. She was now eighteen and had the rights to her own medical care. She was lethargic, laying on the floor and staring into space. We took her to the closest ER with the shortest wait time. Even though the wait time was the shortest, they were still backed up. They drew her blood for testing even though she was still in the waiting room. Within minutes, the nurse was calling her name and putting her into a wheelchair. As she was walking us to her ER bed, the nurse told her that her hemoglobin was 4 when normal for her age was between 12 – 15. The ER doctor ordered a blood transfusion for her. We were then told that she had kidney failure and would most likely need a transplant. After our shock and anger wore off, the nephrologist on call came to see us. He told us that a normal creatinine level was between 0.5 – 1.5; Crystina’s was 32.5. They admitted her into ICU to see if she could naturally bring her level down. Two days later, her creatinine was only down to 26 on its own. The nephrologist ordered a permcath to be put in place and to begin dialysis. She was also moved to the renal floor of the hospital. She had three straight days of dialysis and was released from the hospital. She was put on dialysis three times a week at a local center.
Two weeks after being released, she was admitted again for high potassium levels. She spent another three days in the hospital.
In February (2017), she had her first fistula created in her left wrist. After three weeks, it was obvious that the fistula wouldn’t work. In March, she had a second fistula created in her upper left arm. This one worked and the dialysis center was cleared to use it. Four months after getting the second fistula, her nephrologist took her permcath out. Four days later at dialysis her fistula began to clot when they inserted the dialysis needles. She was told to come to the hospital that day. Her vascular surgeon tried to surgically remove the clots and open up the fistula. After a two hour surgery, he believed that he had succeeded and ordered in hospital dialysis before she could be released. Once they tried to start dialysis, the same clotting problem occurred. He ordered another permcath insertion surgery since the fistula would not work. She was able to successfully dialyze after the permcath insertion.
Also in March 2017, she was referred to the transplant team at Wake Forest Baptist Health. We have completed the education class. She has also completed her pre-transplant evaluation tests. We are waiting on the official decision that she has been placed on the transplant list.