LoriAnn's Gift

LoriAnn Schindel Marquardt lived a very full life. She refused to let her disease and disability define her life. According to one teacher she was the student who brought life and vitality to the room. Life was exciting and was to be explored.

We lost LoriAnn in December -- not to VHL, but to a fungal infection. We wanted to share her story with you both to celebrate her life, and to help others avoid the devastating effects of infection.

LoriAnn loved music and dance and would dance to the TV before she could walk. She became an outstanding flautist, as a soloist and as a member of the Minnesota high school All-State Band. Her vocal accomplishments took her to Europe with a select group in her sophomore year. Her sense of music caused her flute teacher to comment, “LoriAnn sings through her flute.”

LoriAnn was born in Jamestown, North Dakota. She grew up in Duluth, Minnesota. She graduated from Bethel Colloge in St Paul, Minnesota, with a degree in English Literature. She and Larry Marquardt were married Oct 26, 1991. They lived in Richfield, Minnesota. Besides her husband she is missed by her parents Bonnie and Elmer Schindel, her brother Jay and his son Jacob, her step children Michael and Gretchen, and grandson Jackson.

LoriAnn’s journey with VHL began before she could remember, as her grandfather battled the disease. When she was only a year old her mother had her first brain tumor. At age 15 LoriAnn herself was diagnosed and treated for lesions on the retina. She had numerous treatments in her eyes and eventually lost her right eye. Three retinal detachments in the left eye finally left her legally blind. Her blindness did not deter her from pursuing her career as an Administrative Assistant at United Resources Network (URN), a division of United Health Group, that coordinates the location and distribution of human organs for transplantation.

At the age of 22 LoriAnn lost one and one-half kidneys to kidney cancer. The half kidney that remained served her for five years, until it too needed to be removed. Still she maintained her work at URN. After a full day at work she spent three evenings a week on dialysis, and was ready to return to work in the morning. She continued to travel and be involved in many activities, always planning ahead so she was near a dialysis center at the right time.

Her father had wanted to give one of his kidneys, but he came down with cancer that same year. His brother, LoriAnn’s uncle from British Columbia, gave LoriAnn her first new kidney. She went into rejection, the kidney failed, and she returned to dialysis. In March 1999 she received a cadaver kidney which served her the rest of her life.

She had five brain tumors treated with stereotactic radiation. Throughout her series of challenges, she attacked life with vigor. She coped with her own disability and helped share her “can do” spirit with others. She helped facilitate a support group at Vision Loss Resources and became an advocate for people who needed help negotiating the medical system. She took up cooking as a hobby. She looked forward to preparing a meal for friends or family, sometimes from others' recipes and sometimes her own creations. In spite of her health issues, people who first met her could not tell that her health was compromised as she did not dwell on what she did not have, or could not do, but was busy living each day as best she could.

The VHL issue that sneaked up on her was her pancreas. She was taking pills for enzyme replacement and knew about the risks of low blood sugar, but has not been educated about the risks of high blood sugars. Organ transplant patients are subject to fungal infection. There is no cure for many fungal infections, especially if not treated quickly. Bacteria, viruses, and fungi are present all around us at all times. A healthy body has the immune system to protect us. High blood sugar lowers the immune system, along with other risk factors. LoriAnn’s blood sugars had spiked. Because of her generally poor health she did not associate this feeling with a new problem. She lost her energy and lost weight, but only in retrospect did it become clear that her blood sugars had been out of control for some time.

Those at risk for fungal infections should take every precaution possible and should treat every infection as a possible threat to their life. They should see their doctor immediately and discuss the possibility of a fungus, as it is generally not the first issue that a physician will consider.

When asked what she saw ahead of her in death, she said, “God is in charge and everything is OK.”

She died just as she lived her life,
With faith shown at its best.

companion article: Preventing Infection