Support Nicolle Reece
Donation protected
For the past several weeks, Nicolle has suffered immense pain from multiple DVTs and an infection from her PICC line. Instead of treating her infection, her doctors blames mast cell activation syndrome (MCAS) and used MCAS as an excuse to deny her care.
Nicolle has advocated for herself tirelessly; she sought help at 62 appointments and emergency room visits, but doctors have referred her in circles, unwilling to provide solutions or even prescribe medications such as tramadol to reduce her suffering. Due to her specific medications needs and environmental allergies, it is safer and less painful for Nicolle to stay at home than be hospitalized. Nicolle was rejected by Centracare and U of M Health for palliative care, because MCAS was not on the approved list of conditions. Insurance denied many of her specialty medications.
Yesterday, I brought Nicolle Reece to M Health Southdale for sepsis that has been escalating since July. She uses a midline to get her medications and fluids. The doctor said that despite her symptoms of sepsis (104.6F after fluids and 2,000mg tylenol, green drainage from both of her arms, and relentless pain) she would need to transfer to the University of Minnesota Medical Center to see an immunology specialist to address her mast cell activation syndrome.
I explained the University of Minnesota Medical Center does not have an immunologist or any other provider that treats MCAS. The University stopped treating all patients for MCAS in 2017. Nicolle needs antibiotics to treat sepsis, not mast cell disease.
Due to MCAS, Nicolle is allergic to some of the most commonly used antibiotics. The doctor offered Omnicef; however, Nicolle already tried a course of Omnicef without any improvement. Nicolle asked for a full course of IV cefepime because she tolerates it and it lowered her fever.
However, the doctor said “his hands were tied” and discharged Nicolle with a 104.6F because of her mast cell diagnosis, recommending a transfer to see a specialist who does not exist.
Nicolle is 46 years old and the mother of 4 children. Nicolle is a pillar in the mast cell disease community. She runs multiple support groups and offers her knowledge and compassion to mast cell disease patients at all hours of the day. Before MCAS took control of Nicolle’s life, she worked as a nurse in the NICU of a local hospital.
Nicolle simply wants to try antibiotics for her sepsis.
All funds raised will go towards Nicolle’s medical costs and the needs of her children. Her youngest children also are diagnosed with mast cell disease and its comorbid conditions. Nicolle’s wish is to get medical care from a MCAS specialist for her youngest, so that she do not suffer the same fate.
Affordable MCAS care is nonexistent in Minnesota. Most MCAS specialists do not accept insurance, and many tests and treatments are not covered. MCAS is not treated by the University of Minnesota or the Mayo Clinic.
Nicolle has advocated for herself tirelessly; she sought help at 62 appointments and emergency room visits, but doctors have referred her in circles, unwilling to provide solutions or even prescribe medications such as tramadol to reduce her suffering. Due to her specific medications needs and environmental allergies, it is safer and less painful for Nicolle to stay at home than be hospitalized. Nicolle was rejected by Centracare and U of M Health for palliative care, because MCAS was not on the approved list of conditions. Insurance denied many of her specialty medications.
Yesterday, I brought Nicolle Reece to M Health Southdale for sepsis that has been escalating since July. She uses a midline to get her medications and fluids. The doctor said that despite her symptoms of sepsis (104.6F after fluids and 2,000mg tylenol, green drainage from both of her arms, and relentless pain) she would need to transfer to the University of Minnesota Medical Center to see an immunology specialist to address her mast cell activation syndrome.
I explained the University of Minnesota Medical Center does not have an immunologist or any other provider that treats MCAS. The University stopped treating all patients for MCAS in 2017. Nicolle needs antibiotics to treat sepsis, not mast cell disease.
Due to MCAS, Nicolle is allergic to some of the most commonly used antibiotics. The doctor offered Omnicef; however, Nicolle already tried a course of Omnicef without any improvement. Nicolle asked for a full course of IV cefepime because she tolerates it and it lowered her fever.
However, the doctor said “his hands were tied” and discharged Nicolle with a 104.6F because of her mast cell diagnosis, recommending a transfer to see a specialist who does not exist.
Nicolle is 46 years old and the mother of 4 children. Nicolle is a pillar in the mast cell disease community. She runs multiple support groups and offers her knowledge and compassion to mast cell disease patients at all hours of the day. Before MCAS took control of Nicolle’s life, she worked as a nurse in the NICU of a local hospital.
Nicolle simply wants to try antibiotics for her sepsis.
All funds raised will go towards Nicolle’s medical costs and the needs of her children. Her youngest children also are diagnosed with mast cell disease and its comorbid conditions. Nicolle’s wish is to get medical care from a MCAS specialist for her youngest, so that she do not suffer the same fate.
Affordable MCAS care is nonexistent in Minnesota. Most MCAS specialists do not accept insurance, and many tests and treatments are not covered. MCAS is not treated by the University of Minnesota or the Mayo Clinic.
Organizer
Keeya Steel
Organizer
Minneapolis, MN
