Nancy (Nanny) Leigh Mavaega

Castro Valley, Ca- February 8th, 1981 Nancy Leigh Mavaega was first introduced to the world. She was a happy child characterized by her strong sense of self, quick thinking mind, and her love for animals (traits that she carried on into her adult life). But by her late elementary school years she was plagued with chronic stomach pains that kept her continually in and out of the hospital. At age 11, Nancy was diagnosed with type 1 diabetes also known as juvenile diabetes. Following this diagnosis, she and her mother (Who was a single parent) were educated about how to manage living with this condition. With this knowledge, they were able to make important lifestyle changes and able to recognize the symptoms of high blood sugar which would eventually lead to more visits to the hospital if ignored. Nancy took all this information to heart and upon learning about her diabetes she took her health into her own hands and lived as an adult even while she was still just a child. Her mother worked hard to support them and often had to take extra shifts in order to make ends-meet. Not wanting to add to her mother's worries, Nancy checked her own sugar levels and administered insulin to herself when needed, on top of prepping and making her own meals while still taking care of other household chores such as laundry, dishes and caring for her beloved animals. By her mid-teens, Nancy's diabetes proved to be quite aggressive...because of this root illness, she developed high blood pressure and pancreatitis and was admitted into the local hospitals quite often. She fell behind in school and eventually had to drop out in order to make time for a job to pay for her medications. Though, she was disappointed with this set back in her education, she took it in stride and concentrated on getting her health affairs back in line. Eventually, she was able to sign up for home schooling while still balancing work and her well-being. Being sick so often, Nancy often had to settle for minimum wage positions in the fast food industry, as she was unable to stay well long enough in order to obtain experience for a better career. Life was hard, but even with so many bumps in the road she managed to stay positive about the future. She planned on having her own family one day, but in the meantime kept a close relationship with her mother and made some true quality friends along the way. She was respectful, entertaining and quite frankly a pure joy to be around. She touched many people because she always had a genuine smile for each individual she came across and had an open ear and mind when people needed to be listened to, as well as always being ready to lend a helping hand to animals, strangers, friends and family alike. In 2005, Nancy's health took a turn for the worse. In and out of the hospital at least once to twice every month, she experienced a plethora of unfamiliar symptoms which included severe and sudden bloating in her limbs and steadily worsening eye sight along with the usual extreme nausea, vomiting and abdominal pain she was already having. Now an adult, she couldn't afford to pay for health insurance (and wasn't sick enough to qualify for Medical, Medicare and disability) so she used free clinics offered to low income households for her healthcare follow ups. She would wait hours in a crowded lobby even with a scheduled appointment, often just to be scheduled another appointment with another doctor because the previous one couldn't (or wouldn't) figure out what was going on with her. Staying true to her character, she was vigilant about going to all these doctors and expected answers to her ailments soon. She even traveled all the way to Oakland for a series of laser eye treatments to help with her sight. By January 2006, Nancy's immune system was compromised and she was admitted into the hospital for pneumonia. The episode was severe and by her birthday the following month, her lung collapsed and she was in a coma on a ventilator. All who knew her were devastated...she was so young, barely 25 at the time. But she was not ready to give up. She woke up from her coma and slowly began her road to recovery. The hospital discovered that Nancy was experiencing end-stage renal failure and she was put on dialysis. Unfortunately, they neglected to call in a specialist for her eyes so by the time she was discharged she was legally blind. Barely able to see shapes in bright light, she was still very weak from her ordeal, but even with the loss of her eyes and kidneys she was so thankful to be alive. She hoped to become a spokesperson for diabetes and wanted to help individuals with it deal with the responsibility of the disease in order to avoid the repercussions later in their life. But first, she would focus on learning to live life without the use of her eyes while at the same time adjusting to the restrictions that a dialysis patient would need to follow. For years, Nancy would need to go to dialysis three times a week every week, as well as attend her other doctors’ appointments. Because she was blind and had end-stage renal failure, she was finally granted medi-cal and medicare. She moved to the central valley to avoid the overcrowded hustle and bustle of the bay area and found a home away from home. Here she was able to concentrate on rehabilitating herself, strengthening her mind, body and soul. Although she did still need to go to the hospital often, she got the care and attention she needed by the local doctors that helped her keep her ailments at bay. She looked forward to going to the local School for the Blind as she would finally be able to once again continue her education as well as being able to read and cook again, two things she was extremely fond of before she got pneumonia. On January 2013, Nancy received a kidney and pancreas transplant. She was cured of her diabetes and now had a functioning kidney so no longer had to go to dialysis. Once she got accustomed to the new medicine regiment and weekly lab tests, she planned on starting her journey as a diabetic spokesperson. A dream come true, as she felt that it was her destiny to educate others through her own personal experiences. For the next several months, Nancy was happy and healthy once again. She was strong enough to make the trip to visit her mom as they had not lived together since she first went blind. She also reconnected with other family members whom she had lost contact with over the years and even attended a small family reunion. She got her energy up enough to enjoy being able to play with her ever loyal dogs. But because she was on medicines that restrict her immune system so that her body would not reject her transplanted organs, she was very susceptible to getting sick. So she exercised extreme caution at home and out in public, especially since there was a very bad case of the flu going around at the time. But still with all the precautions, Nancy got sick. It started with a simple cough, then bouts of nausea, vomiting and abdominal pain started recurring. Again, Nancy was in and out of the hospital but for some reason they did not seem as willing to help her as they once were. Due to the flu, hospitals and emergency rooms alike were packed, but this is not a valid reason for the standard of quality care that occurred. Doctors and nurses alike were rude and cold to Nancy, ignoring her call light regularly. Nancy felt helpless at the hospital and was even scared to go back, but as her symptoms worsened, she had no choice. She was sick and needed medical attention. But most of the time the hospital would be full and they would discharge her from the emergency room with a simple order to follow up with her primary doctor. She followed this order and was scheduled to see a variety of specialists who would help her find out why she was once again experiencing the symptoms that have defined her life. Unfortunately she was too ill to make it to these appointments because she would once again have to resort to another emergency room visit. But oddly enough she was not sick enough to merit an admission into the hospital; a catch 22, too sick to stay home but not sick enough to stay at the hospital. With the aide of her friends, Nancy did the best she could to follow up with her own doctors and to live as normally as possible although she didn't feel good. She got to enjoy both thanksgiving and Halloween, but missed Christmas as she was finally admitted in to the hospital for an observational stay since her symptoms hadn't eased. She was home to bring in the new year of 2014 but was once again at the emergency room and released with a diagnosis of bronchitis. She and I (her friend and caregiver) spoke with the doctor and plead with him to admit her but he did not. His reason, that her labs were clean and that even with her compromised immune system she should be ok to go home. He wrote a prescription for an antibiotic and sent us on our way. Not even two days later, she went back to the ER and she was admitted with pneumonia. Less than a week passed, when the hospital decided to transfer her to the hospital that gave her the transplant, as they would be better equipped to give her proper healthcare. However necessary it was to transfer Nancy, under her circumstances, the route in which they took was appalling. Being blind and, at the time, completely incoherent, Nancy’s primary, and all 3 other emergency contacts were not reached until the transfer team had already arrived; on the phone, the hospital failed to inform us of her condition. Confused, alone, and uncomfortable to say the least, Nancy was shipped off to a hospital a couple of hours away from everything familiar to her. Her small circle of friends rushed to meet her at the other hospital, and stood vigil by her side until she was more herself. It was a few days after the transfer she was finally able to comprehend what was going on. She didn't remember anything about her final stay at the hospital in the central valley, but was surely glad not to be there, after she was told of how she was transferred and what condition she was in. She no longer felt safe at that hospital. Nancy worked with the hospital she was now at as best she could but her cough now bloomed into chest pain. The day after, Nancy's lung collapsed and she was once again in a coma. On a ventilator, her vitals fluctuated, but evened out after a tough 72 hours, we were hopeful. Unbecoming, by the end of January, her beautiful brain was pronounced dead. And by February 3rd, Nancy Leigh Mavaega passed away, 5 days short of her 33rd birthday. People claim to know the difference between what you bring into your life, and what the hand of life deals you. Nancy triumphed, however low life got, she persevered through with a clear view of what this world entailed. Anyone who let their minds intertwine with hers came out either happy or mad. Happy on account of an intelligent conversation, or perhaps a life realization; or mad, because they simply can’t handle or accept the reality that they’ve created. Nancy was one of the most genuine people you could ever have had the pleasure to encounter; she found things her friends couldn’t, she said what most wouldn’t, she accepted what most can’t even fathom, and she loved truly unconditionally. As one can see, Nancy never lost motivation & that’s what she conveyed to all she came across. More importantly, however difficult, she accepted the reality of her world, and she grabbed it by the horns & rode that beast to a tame entity, a powerful entity; if you ever feel like life has just handed you too much, really look at the situation for what it’s worth, from others point of view; and move forward in a positive nature. Nancy always prevailed in the face of discouragement and doubt, and her essence continues to influence those who knew her to do the same. The beauty of life is just that, to be alive, and Nancy would want you all to live it fully, with your eyes open to see, your ears open to hear, and your hearts open to love. wrote by Nanny's friend