Kidney-Pancreas for Nicole
Donation protected
Nicole was diagnosed with Type 1 diabetes, a chronic life-threatening autoimmune disease, when she was 17 years old. She was a junior in high school and had just moved from Los Angeles to Ventura County, CA. She began to experience early signs of T1d such as insatiable thirst, losing weight, and urinating excessively, even wetting her bed overnight. Her cousin was diagnosed with T1d prior to her and so, her mom was fairly familiar with some of the symptoms and they both suggested she go in for testing. Their urgency prevented Nicole from slipping in to diabetes ketoacidosis – when your body begins to burn fat instead of glucose due to the inability to produce insulin. Blood becomes so acidic and can lead to a diabetic coma and even death without immediate hospitalization, IV fluids restored, and insulin administered.
Nicole didn’t want to be the type to “have to take shots,” but her dad assured her that it would become her new “normal.” The first doctor she visited didn’t suspect she had T1d and she sought a second opinion who confirmed her diagnosis. She soon began insulin therapy via multiple daily injections (MDI). T1ds cannot produce their own insulin due to their body’s immune system attacking and destroying the beta cells in their pancreas making them insulin dependent for life. It is not like Type 2, there is no known cure, and they cannot prevent, reverse or outgrow it. Anyone at any age is susceptible to T1d.
Her diabetes care team included a dietician who basically told her, “You have to do this [everyday] to stay alive.” With that, Nicole took the syringe, filled it with insulin, and injected her thigh in the blink of an eye. It was her preferred injection site which lead to lipohypertrophy or lumps under the skin that can be mildly painful and may affect the absorption of insulin. After two years of MDI, she finally started pumping insulin and then began using a continuous glucose monitor (CGM) in 2015. She went through years of denial and resenting this disease, lacking the mental and emotional support needed especially following diagnosis. This lead to diabetic neuropathy by the age of 24. From 2006, she would endure multiple diagnoses including celiac – another common autoimmune disease where you cannot eat gluten or it will trigger an immune response to attack the small intestine; Fibromyalgia, gastroparesis, autonomic neuropathy, Severe, diabetic macular edema (eye disease), and severe diabetic proliferative retinopathy. Her retina specialist told her that she would go blind without surgery on both her eyes. She is currently recovering from a vitrectomy on her right eye.
By 31 years of age, she developed stage 3 kidney disease which jumped to stage 5 in less than two years. Her kidney doctor advised her to call a transplant team for an evaluation in February when she was at 20 percent kidney function. The evaluation was done at UCLA in April 2018. She began kidney dialysis two months later. By July, she was listed with UNOS for a kidney-pancreas transplant, but they pulled her off. Then, they said they’d just keep her listed for a kidney and needed an additional test performed before putting her back on the double-transplant list. However, she was only at 10% function - the test would’ve blown out her remaining kidney function. Good thing she refused and went to Cedars Sinai for her evaluation instead. They were on-board with her treatment, signed on a new pancreas surgeon from Duke and she loves her new care team. They told her for a kidney-pancreas transplant, the wait is about 6-12 months vs a kidney alone which would take 8-10 yrs. This reassured her that her decision to have a double transplant was sound.
She will have to continue dialysis three times weekly at a little over three hours each session to filter her blood. This keeps her alive. However, she cannot remain on dialysis for long, typical life-span is an additional 5-10 years depending on the individual and circumstances. Once her transplant team notifies her that they have a donor available, she will need to act quickly. Her name has already come up a few times on the list, but she cannot afford the surgery and her current insurance does not cover the vital anti-rejection drugs (multiple prescriptions) she will require daily post-surgery.
The earliest she would require financial assistance would be the end of November 2018. Please note that she has researched and looked into acquiring additional insurance, but this platform is the most efficient way to get her that double transplant. Your generous donations will aid in affording all necessary medications, further testing, any possible additional surgeries, and anything out-of-pocket such as her durable medical equipment (insulin pump and continuous glucose monitor and other diabetic supplies). We hope you can help us spread the word by sharing her story and campaign on social media with the #kidneypancreasfornic. Thank you very much for your kindness and support.
Nicole didn’t want to be the type to “have to take shots,” but her dad assured her that it would become her new “normal.” The first doctor she visited didn’t suspect she had T1d and she sought a second opinion who confirmed her diagnosis. She soon began insulin therapy via multiple daily injections (MDI). T1ds cannot produce their own insulin due to their body’s immune system attacking and destroying the beta cells in their pancreas making them insulin dependent for life. It is not like Type 2, there is no known cure, and they cannot prevent, reverse or outgrow it. Anyone at any age is susceptible to T1d.
Her diabetes care team included a dietician who basically told her, “You have to do this [everyday] to stay alive.” With that, Nicole took the syringe, filled it with insulin, and injected her thigh in the blink of an eye. It was her preferred injection site which lead to lipohypertrophy or lumps under the skin that can be mildly painful and may affect the absorption of insulin. After two years of MDI, she finally started pumping insulin and then began using a continuous glucose monitor (CGM) in 2015. She went through years of denial and resenting this disease, lacking the mental and emotional support needed especially following diagnosis. This lead to diabetic neuropathy by the age of 24. From 2006, she would endure multiple diagnoses including celiac – another common autoimmune disease where you cannot eat gluten or it will trigger an immune response to attack the small intestine; Fibromyalgia, gastroparesis, autonomic neuropathy, Severe, diabetic macular edema (eye disease), and severe diabetic proliferative retinopathy. Her retina specialist told her that she would go blind without surgery on both her eyes. She is currently recovering from a vitrectomy on her right eye.
By 31 years of age, she developed stage 3 kidney disease which jumped to stage 5 in less than two years. Her kidney doctor advised her to call a transplant team for an evaluation in February when she was at 20 percent kidney function. The evaluation was done at UCLA in April 2018. She began kidney dialysis two months later. By July, she was listed with UNOS for a kidney-pancreas transplant, but they pulled her off. Then, they said they’d just keep her listed for a kidney and needed an additional test performed before putting her back on the double-transplant list. However, she was only at 10% function - the test would’ve blown out her remaining kidney function. Good thing she refused and went to Cedars Sinai for her evaluation instead. They were on-board with her treatment, signed on a new pancreas surgeon from Duke and she loves her new care team. They told her for a kidney-pancreas transplant, the wait is about 6-12 months vs a kidney alone which would take 8-10 yrs. This reassured her that her decision to have a double transplant was sound.
She will have to continue dialysis three times weekly at a little over three hours each session to filter her blood. This keeps her alive. However, she cannot remain on dialysis for long, typical life-span is an additional 5-10 years depending on the individual and circumstances. Once her transplant team notifies her that they have a donor available, she will need to act quickly. Her name has already come up a few times on the list, but she cannot afford the surgery and her current insurance does not cover the vital anti-rejection drugs (multiple prescriptions) she will require daily post-surgery.
The earliest she would require financial assistance would be the end of November 2018. Please note that she has researched and looked into acquiring additional insurance, but this platform is the most efficient way to get her that double transplant. Your generous donations will aid in affording all necessary medications, further testing, any possible additional surgeries, and anything out-of-pocket such as her durable medical equipment (insulin pump and continuous glucose monitor and other diabetic supplies). We hope you can help us spread the word by sharing her story and campaign on social media with the #kidneypancreasfornic. Thank you very much for your kindness and support.
Organizer
Shelsea Deng
Organizer
Thousand Oaks, CA
