Amy Lake's Transplant Fund
Don protégé
Hello Everyone, Maddison Lake here, Amy Lakes son. My Mom has asked me to write this as a way to break the ice to explain some of what’s been happening with her health. She has kept quiet to not bother everyone, especially since it’s only been a few years since my Dad’s death and the emotional toll that comes with losing a spouse. Now, she feels her friends and family should know her situation.
After this, she will be available to take your messages and she will probably write something of her own.
In early 2016 she was diagnosed with chronic HCV (Chronic Hepatitis C), this disease is common with at least 3.2 million Americans living with it today and that number is growing by the hour (an estimated 150 million people worldwide have HCV without even knowing it), it’s common in the baby boomer generation and doctors have only began to recently test for HCV in the recent years, so it’s possible my Mom has been carrying this virus for 30 years, undetected. Chronic HCV results in Liver Cirrhosis, regardless of health status and habits. Unfortunately, by the time the doctors caught the disease, she was diagnosed with Stage 4 Liver Cirrhosis, where the only cure and treatment is a Liver transplant.
In early June, she was unbelievably fortunate to have been referred to and accepted at Mayo Clinic in Jacksonville Florida, literally the best clinical hospital in the world, to begin prepping her for a Liver transplant and to determine if she would be eligible for a new Liver from a deceased donor. This process has been exhausting with many 12 hour days of testing, intensive pre-transplant care to keep the disease at bay and many extended hospital stays. For those who know a little bit about an organ transplant process, you know how unique and tough the process is, not only on the patient, but also the caregivers.
Over the past few weeks, her condition has worsened, as would be inevitably expected with a failing Liver, she has been admitted to long term inpatient care at the Mayo Clinic hospital. She was activated on the Liver transplant list on Friday where she is number one on a list of over 11,000 people, with her MELD score where it is now, she could be receiving a new Liver within hours, days or a week at the most from this posting.
Myself, Claire (my girlfriend of 7 years), and Elliott and his Wife Lindsay have been her caregivers walking her through this tumultuous process, Claire and I have spent weeks upon weeks in Florida comforting my Mom with Elliott and Lindsay, helping with the process at Mayo Clinic.
A lot of positives have come from this terrible situation, such as; my Mom’s insurance that she got through the ACA, approved the Liver transplant financially. Before the ACA, she would not have access to this type of care, my Mom has also met so many wonderful new people and it also means we are relocating her to a bigger and exciting city from Palm Coast to Jacksonville to receive ongoing care at Mayo.
I would like to say, that the folks at Mayo Clinic are some kind of amazing, I have had my small fair share of hospital experiences, but nothing is like Mayo Clinic. They stop at nothing to make sure the patients’ needs are met. Everyone from the Nurses, RN’s, Housekeepers, PA’s, Doctors and Surgeons have been educational and have been aggressive in working towards a transplant. Their facilities make you feel like a 5 Star VIP, nothing like a traditional hospital feel.
As we are waiting for a Liver to give my Mom a new start on Life, we are mainly asking for love and emotional support, my Mom has made so many amazing Facebook friends and connections through Art as a medium and from that, people she has never met in person, have become close to her. She has also touched so many lives in her 63 years, from Kids at Play, Purplesheimers, The Grand Theatre, Elf School and The Chefs Table restaurant, Amy Dee Lake Creations and so many more, the amount of people she has influenced is unquantifiable.
Taylor and Grandma Amy
From a financial standpoint, Elliott, Claire and I have been very fortunate to have insurance cover the transplant ($315,000), the pre-transplant medical care ($35,000) and her inpatient stays ($3,500/day). However, in-home nursing, moving expenses, medication co-pays, insurance co-pays, hotel stays during testing has cost 10’s of thousands and is draining us dry. As caregivers, Claire, Elliott, Lindsay and I will be spending a lot of time away from work for 12 – 20 weeks, post-op, to care for her 24/7.
We have setup a GoFundMe where anybody that would be willing to help on that aspect of things would help us pull her through this process easier. Only donate if you can, as I said before, support and love is more potent and powerful than any dollar and is appreciated equally.
We will continue posting updates as we go. She is very weak right now, so we are trying to keep phone-calls to a minimum.
Love you all!
Sincerely,
Maddison, Claire and Elliott & Lindsay
Christmas time with the Amelia, Lorelei and Taylor
After this, she will be available to take your messages and she will probably write something of her own.
In early 2016 she was diagnosed with chronic HCV (Chronic Hepatitis C), this disease is common with at least 3.2 million Americans living with it today and that number is growing by the hour (an estimated 150 million people worldwide have HCV without even knowing it), it’s common in the baby boomer generation and doctors have only began to recently test for HCV in the recent years, so it’s possible my Mom has been carrying this virus for 30 years, undetected. Chronic HCV results in Liver Cirrhosis, regardless of health status and habits. Unfortunately, by the time the doctors caught the disease, she was diagnosed with Stage 4 Liver Cirrhosis, where the only cure and treatment is a Liver transplant.
In early June, she was unbelievably fortunate to have been referred to and accepted at Mayo Clinic in Jacksonville Florida, literally the best clinical hospital in the world, to begin prepping her for a Liver transplant and to determine if she would be eligible for a new Liver from a deceased donor. This process has been exhausting with many 12 hour days of testing, intensive pre-transplant care to keep the disease at bay and many extended hospital stays. For those who know a little bit about an organ transplant process, you know how unique and tough the process is, not only on the patient, but also the caregivers.
Over the past few weeks, her condition has worsened, as would be inevitably expected with a failing Liver, she has been admitted to long term inpatient care at the Mayo Clinic hospital. She was activated on the Liver transplant list on Friday where she is number one on a list of over 11,000 people, with her MELD score where it is now, she could be receiving a new Liver within hours, days or a week at the most from this posting.
Myself, Claire (my girlfriend of 7 years), and Elliott and his Wife Lindsay have been her caregivers walking her through this tumultuous process, Claire and I have spent weeks upon weeks in Florida comforting my Mom with Elliott and Lindsay, helping with the process at Mayo Clinic.
A lot of positives have come from this terrible situation, such as; my Mom’s insurance that she got through the ACA, approved the Liver transplant financially. Before the ACA, she would not have access to this type of care, my Mom has also met so many wonderful new people and it also means we are relocating her to a bigger and exciting city from Palm Coast to Jacksonville to receive ongoing care at Mayo.
I would like to say, that the folks at Mayo Clinic are some kind of amazing, I have had my small fair share of hospital experiences, but nothing is like Mayo Clinic. They stop at nothing to make sure the patients’ needs are met. Everyone from the Nurses, RN’s, Housekeepers, PA’s, Doctors and Surgeons have been educational and have been aggressive in working towards a transplant. Their facilities make you feel like a 5 Star VIP, nothing like a traditional hospital feel.
As we are waiting for a Liver to give my Mom a new start on Life, we are mainly asking for love and emotional support, my Mom has made so many amazing Facebook friends and connections through Art as a medium and from that, people she has never met in person, have become close to her. She has also touched so many lives in her 63 years, from Kids at Play, Purplesheimers, The Grand Theatre, Elf School and The Chefs Table restaurant, Amy Dee Lake Creations and so many more, the amount of people she has influenced is unquantifiable.
Taylor and Grandma AmyFrom a financial standpoint, Elliott, Claire and I have been very fortunate to have insurance cover the transplant ($315,000), the pre-transplant medical care ($35,000) and her inpatient stays ($3,500/day). However, in-home nursing, moving expenses, medication co-pays, insurance co-pays, hotel stays during testing has cost 10’s of thousands and is draining us dry. As caregivers, Claire, Elliott, Lindsay and I will be spending a lot of time away from work for 12 – 20 weeks, post-op, to care for her 24/7.
We have setup a GoFundMe where anybody that would be willing to help on that aspect of things would help us pull her through this process easier. Only donate if you can, as I said before, support and love is more potent and powerful than any dollar and is appreciated equally.
We will continue posting updates as we go. She is very weak right now, so we are trying to keep phone-calls to a minimum.
Love you all!
Sincerely,
Maddison, Claire and Elliott & Lindsay
Christmas time with the Amelia, Lorelei and TaylorOrganisateur
Maddison Lake
Organisateur
Candler, NC