Divorced Mother of One Son (16 years old)
Autoimmune Hepatitis is a disease that causes inflammation in your liver that occurs when your body’s immune system attacks your liver. In time, this will lead to scarring of the liver (cirrhosis) and cause liver failure.
Meet my sister, Becky.
Diagnosed at 7 years old in a time that there was not much known about the disease. As technology and medicine has advanced, so has her disease. She is now in a state of liver failure. As a family, we have always known this was a serious disease as she has taken medicine and met with specialists the majority of her life. Thanksgiving 2013 was our first experience of hospitalization in her adult life for the disease. Becky developed hepatic encephalopathy, which causes confusion and an altered level of consciousness. She also had low sodium levels, was rapidly retaining fluids, and extremely high ammonia levels. She spent Thanksgiving in the hospital and the doctors and staff were able to stabilize her and connect her with the Baylor Liver Team. She returned to work after the hospital stay and followed strict orders by her new team of doctors which included many medicines, labs, doctors’ appointments, restricted food diets, and restricted fluid intake. This past year has been the most difficult for her. She continued to retain fluids, despite the medicines and fluid restriction, and suffered from extreme insomnia while trying to continue to work and be a mother. She has received numerous paracentesis (draining of tummy fluid) of 3-4 liters at a time and has had infection in the fluid. When a patient is suffering from liver damage and/or failure doctors use a MELD score to identify the patient’s level of transplant need. Becky’s MELD score is considered low - at around an 18. This score is calculated from lab work and other organ functionality. You must be at a 26 to be placed on a transplant list to receive a liver. She has done everything her team of liver specialists has asked her to do and has gained no relief or improvement. She has agreed to be a part of their research team to better understand this rare form of hepatitis.
This past November she was admitted to the hospital again with most of the same symptoms. After a week of treatment, the Baylor Liver Team delivered the news they would approve her for a liver transplant due to her patient compliance and rarity of this disease. She suffers from almost every symptom of a patient in liver failure, yet her score is not high enough to receive a liver. The doctors gave her the option of seeking a living donor. The surgeons can take 60% of a living donor liver. This liver will then regenerate in Becky and the donor’s body to nearly 100% for both.
We have many steps ahead before this transplant will actually take place. Becky is currently unable to work due to her illness. Family is with her as much as we can be since her altered state can be dangerous to be unsupervised. She is unable to drive so all errands (groceries, medicines, etc.) must be done for her. Both myself and my mom live over an hour away from her so it has been difficult, to say the least. She is a mother to one son, age 16, who attends Rockwall High School as a sophomore.
We attended our first living donor appointment on 2/10/15. We received an overwhelming amount of information. It also allowed my Mom to understand the first steps that need to be taken for her to be considered a living donor for my sister. Committees must meet and many decisions must be made before she is brought in for her first round of testing, if initially approved by the committee. We hope to know in about a month if they will truly consider her as a living donor as her age is a concerning factor.
As of 2/12/15 - Becky was terminated from her job once her FMLA ran out. We are hopeful she will be approved for her long term disability claim and be able to receive 60% of her salary. We have elected to continue her coverage through COBRA since there is not an Obamacare plan available that would even cover half of her medicines. Her insurance premiums will be $535.00 per month and her estimated co-payments for medicines are $200.00 per month.
In the near future we expect her and my Mom to move in together to consolidate living expenses and have the ability to monitor my sister better. Also, my Mom is a potential candidate to be the living donor, which will put my Mom out of work during recovery. Please consider donating to help with medical insurance premiums, medical costs and living expenses for this beautiful soul. A liver transplant is the only thing that will give her life again! If you are unable to contribute monetarily, this family accepts all the prayers we can get. Please add us to your list.
- Nicole Wright
- Michael Agee
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