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This fundraiser is for our baby sister, Gracie. This is a wild ride type of story, so brace yourself.
Gracie began feeling sick approximately 6 months ago. She went to quite a few doctors in her area looking for answers/relief but none of them were able to diagnose her. In February she was finally referred to UVA and was waiting for her appointment there in April.
Unfortunately, on March 20th she was diagnosed with acute liver failure after reporting to her local ER. They tried transferring her up to UVA but they had no availability to take her. She was then transferred to Wake Forrest University where her life was saved by a physician who suspected her having a very rare genetic disease called Wilson's disease. This disease is so rare that they said most physicians will work their entire careers and never see this condition. He was able to get her to the "right" hospital in Charlotte called Carolina Medical Center where their specialty was liver transplants. She was promptly transferred.
Gracie's diagnosis was absolutely critical. In her past doctors visits/evaluations she was constantly questioned on alcohol and drug abuse. This is expected when the liver is involved but it was very frustrating for her to explain over and over again that she does not abuse drugs/alcohol and to not be heard/believed. The reason her Wilson's diagnosis was critical was because it would determine her placement on a transplant list. Her having a genetic disease in combination with how gravely sick she was, would allow her to be placed in the #1 spot on a transplant list. If the doctors did not agree/confirm the Wilson's diagnosis they would default her liver failure to be due to alcohol/drug abuse and she essentially would not live long enough to get a new liver.
Thankfully, on Monday, March 23rd the doctors finally confirmed the Wilsons's after finding copper in her eyes. There is multilevel criteria to diagnose this disease but that was good enough for them and they refused to wait any longer to get her on the transplant list. She was on the list the same day by 5PM.
Grace had been offered, accepted and was on the operating room table for her new liver within 36 hours of being on the list. Her surgery was 10 hours long so this was a long day for everyone involved. The surgeon said that she had one of the sickest livers he had ever seen. He described it as a very large bowling ball.
She had a few minor bumps in the road with recovery but overall, nothing we could complain about. She was finally released to go home on April 13th and we all just lived through a absolute miracle! She is officially cured of Wilson's Disease.
Luckily for Grace, she had made her open enrollment for the new controversial healthcare.gov insurance and that was activated on January of 2015. For those who know Grace, they know that she has been a full time (40-60 hours per week) kitchen worker for the past 15 years. There is no way she would have been able to survive this experience with out this insurance. She has always been a responsible, independent, employable and tax-paying citizen. As a matter of fact, she worked the day before she was diagnosed with acute liver failure.
Her being out of state did place her as "out of network" for this insurance but luckily the hospital fought them on any denials/transfers due to the acuteness of her condition and she was approved for transplant. She does have to meet deductibles, co-insurance and out of pocket max. She also has no form of income while being treated and recovering. She will be "married" to her transplant team for the rest of her life with monitoring and medications to avoid rejection of the liver and infections. She left the hospital with 13 medications and 2 of them she has already received a grant to help with payment for them.
Unfortunately, no matter how much she works, this medical experience and maintenance as a transplant patient will be a major mountain to climb. We are also very concerned about the long term status of this healthcare.gov insurance. She needs to financially prepare for a more costly premium and plan.
Please donate what settles well with you and please help spread the word.
Gracie began feeling sick approximately 6 months ago. She went to quite a few doctors in her area looking for answers/relief but none of them were able to diagnose her. In February she was finally referred to UVA and was waiting for her appointment there in April.
Unfortunately, on March 20th she was diagnosed with acute liver failure after reporting to her local ER. They tried transferring her up to UVA but they had no availability to take her. She was then transferred to Wake Forrest University where her life was saved by a physician who suspected her having a very rare genetic disease called Wilson's disease. This disease is so rare that they said most physicians will work their entire careers and never see this condition. He was able to get her to the "right" hospital in Charlotte called Carolina Medical Center where their specialty was liver transplants. She was promptly transferred.
Gracie's diagnosis was absolutely critical. In her past doctors visits/evaluations she was constantly questioned on alcohol and drug abuse. This is expected when the liver is involved but it was very frustrating for her to explain over and over again that she does not abuse drugs/alcohol and to not be heard/believed. The reason her Wilson's diagnosis was critical was because it would determine her placement on a transplant list. Her having a genetic disease in combination with how gravely sick she was, would allow her to be placed in the #1 spot on a transplant list. If the doctors did not agree/confirm the Wilson's diagnosis they would default her liver failure to be due to alcohol/drug abuse and she essentially would not live long enough to get a new liver.
Thankfully, on Monday, March 23rd the doctors finally confirmed the Wilsons's after finding copper in her eyes. There is multilevel criteria to diagnose this disease but that was good enough for them and they refused to wait any longer to get her on the transplant list. She was on the list the same day by 5PM.
Grace had been offered, accepted and was on the operating room table for her new liver within 36 hours of being on the list. Her surgery was 10 hours long so this was a long day for everyone involved. The surgeon said that she had one of the sickest livers he had ever seen. He described it as a very large bowling ball.
She had a few minor bumps in the road with recovery but overall, nothing we could complain about. She was finally released to go home on April 13th and we all just lived through a absolute miracle! She is officially cured of Wilson's Disease.
Luckily for Grace, she had made her open enrollment for the new controversial healthcare.gov insurance and that was activated on January of 2015. For those who know Grace, they know that she has been a full time (40-60 hours per week) kitchen worker for the past 15 years. There is no way she would have been able to survive this experience with out this insurance. She has always been a responsible, independent, employable and tax-paying citizen. As a matter of fact, she worked the day before she was diagnosed with acute liver failure.
Her being out of state did place her as "out of network" for this insurance but luckily the hospital fought them on any denials/transfers due to the acuteness of her condition and she was approved for transplant. She does have to meet deductibles, co-insurance and out of pocket max. She also has no form of income while being treated and recovering. She will be "married" to her transplant team for the rest of her life with monitoring and medications to avoid rejection of the liver and infections. She left the hospital with 13 medications and 2 of them she has already received a grant to help with payment for them.
Unfortunately, no matter how much she works, this medical experience and maintenance as a transplant patient will be a major mountain to climb. We are also very concerned about the long term status of this healthcare.gov insurance. She needs to financially prepare for a more costly premium and plan.
Please donate what settles well with you and please help spread the word.
Organizer and beneficiary
Charlotte Conner
Beneficiary