Lifesaving Help for Retired Nurse
Donation protected
Edited 07/12/18:
We have reason to hope, but our situation remains critical.
My mother is having to continue her at-home IV infusions. While there has been a change in her regimen (please see most recent update for more detailed explanation), and we do have data to show that this treatment plan is working, her infection remains very difficult to kill. As things stand now, she will require the full six months of antibiotic therapy.
We are still fighting to save our home. (Again, please see most recent update). My parents and I have nowhere to go and are too ill to pack and move. All three of us have special needs ranging from mobility limitations to breathing issues that would make relocation nightmarish.
Please know that every donation makes a positive impact, and if you can't donate, please share this campaign on your social media or with friends or any organizations that might be able to help.
Below is a breakdown of what we're trying to raise:
$4000 -- Mom's IV and oral antibiotic regimen plus IV supplies for six months.
$1500 -- Mom's cardiac medication and blood thinner for the six months that she will be in her coverage gap due to the expensive IV medications.
$1000 -- Dad's upcoming medical expenses.
$3000 -- Vital living expenses to keep us safely sheltered while Mom completes her treatment and I serve as full-time caregiver for my parents.
Dad has an important medical appointment in August that should be a step toward stabilizing his condition, and Mom's treatment now has a tentative ending date of late October. My goal is to return to work in early November.
Please continue reading for the full story behind our family's struggle to survive this unexpected medical crisis:
My mother, Marie, is in a life-altering medical crisis. This past October, she discovered a small cut on her right thumb and went to an upper extremity specialist when the finger tripled in size and turned angry red. Her thumb appeared to heal with oral antibiotics, but by November, her entire forearm was swollen and painful. For months Mom suffered chronic, unbearable pain and underwent numerous labs and diagnostics from several specialists. Throughout this time, she continued to get weaker, sicker, and began having difficulty performing even basic daily activities. Holding a toothbrush or a newspaper could make her cry with pain. She lost some function and grip-strength in her right hand. Finally, in late February, pathology of aspirated elbow fluid showed an extremely resistant mycobacterium abscessus group infection. The orthopedic surgeon sent Mom directly to Infectious Disease, where we learned that she will need long-term IV and oral antibiotics and possibly surgery. She will need IV infusions 3 times daily for up to 6 months plus potential IV maintenance therapy beyond that initial treatment. These are dangerous medicines that can cause serious kidney and heart damage, so she will require monitoring and frequent lab work to make sure the therapy is working without poisoning her body. In 2013, Mom had open-heart surgery to repair her mitral valve. If this infection spreads to the ring in Mom’s repaired valve, she will need open-heart surgery and her chances of survival significantly decrease.
For decades, my parents have left no stone unturned trying to provide medical care and raise resources to save my life as I battled life-threatening autoimmune conditions. When I was a toddler, Mom was diagnosed with a heart condition, but she still went into nursing school in her mid-thirties, because she was determined that her only child would have a medical support system at home and access to quality medical care. Since then, Mom has been by my side through oral and periodontal surgeries, diagnostic tests and procedures, multiple hospitalizations, and numerous medical trips out of state, as far away as Denver, Colorado, where I was a respiratory patient at National Jewish Medical and Research Center. Prior to 2016, my parents exhausted our savings and home equity, took out personal loans, and went through retirement funds to cover my lifesaving medical care. They have nothing left but fixed social security income and only the generosity of others kept my fight for life going until I could undergo necessary surgical treatment in Charlotte in December 2017. In recent months, and while I was recovering from surgery, Mom attempted to supplement her social security income as an in-home sitter for a non-acute patient. By early March, her own health condition had deteriorated to the point that she could no longer manage even two shifts of sitting in a week.
Along with the stress of Mom facing this frightening medical condition, we received devastating news that Medicare and her Blue Cross Blue Shield supplement will not pay for at-home infusion therapy. To even start treatment, Mom had to be in the hospital followed by a long-term acute care (LTAC) facility. After nearly four weeks of remaining cardiac stable on telemetry monitoring, Mom was discharged to home for the next round of treatment. Appeals to Medicare by the LTAC's case management team failed to get the IV supplies covered, but finding a different infusion company did reduce Mom's out-of-pocket expense from $1700 to $880 per month. I need to raise at least enough to cover six months of her treatments, because Infectious Disease has advised us that this resistant bacteria can take that long to show susceptibility.
Maintaining Mom and Dad’s Medicare supplements and Part D prescription drug coverage has been a tremendous financial hardship but necessary to give them access to the healthcare and medications they need to survive. We had hoped they were covered against any medical crisis, but this situation with Mom has left us scrambling to gather resources. Not only have Medicare and BCBS failed to provide adequate coverage, but these IV medications will also push Mom into the coverage gap of her prescription drug insurance and make it impossible to afford her expensive cardiac maintenance medications.
Meanwhile, my father, Donnie, is still frail following surgical hip repair last year, and he has a progressive eye condition that has severely limited his vision, so he is unable to supplement the household income. Dad also needs advanced dental care that isn’t covered by his medical insurance.
For nearly two years, even as my health worsened, I held on to a part-time telecommuting job that allowed me to have Affordable Care Act insurance, but this past fall that job changed into an on-site position plus travel, so I had to medically resign in preparation for having surgery. My surgery went well, but I still have chronic health obstacles to overcome before full-time employment is feasible for me. For the foreseeable future, Mom won’t even be able to work as a private-duty sitter. We do not have resources to hire outside assistance, so I am juggling medical appointments for myself and my parents, administering Mom's IV infusions each day, and serving as caregiver, power of attorney, and homemaker for both my parents. While I’m so very grateful that my health has improved enough that I can assist in this way, I also know Mom needs financial support I can’t give. I’m trying to find long-term solutions, but in the past our mortgage holder has been more interested in their bottom line than in critical-need hardship. These strong antibiotics come with numerous side effects and are making Mom extremely ill. I do not want her to have the added fear that we will lose our home, be unable to keep the electricity on, or cover basic living expenses, and I don’t want Dad to worry about having to leave the home where he is comfortable, safe, and able to maintain the little independence he has left.
On April 11, Mom had surgical port placement to prepare for the IV treatments, and we worked with Infectious Disease, Orthopedics, and Cardiology to decide on the best hospital placement for her and to make a decision on surgical options. On April 26th, she went into the hospital, starting with nonsurgical, IVs-only treatment, and came home on May 18th to continue the IV treatment for at least 12 more weeks, with possibly three more months of treatments after that, depending on the results of testing she will undergo in August.
Please help me give my mother the best chance possible to fight this infection. Not only do I want to see her well and completely cleared of this dangerous bacteria, but I also want her to finally have a chance to experience life that isn’t constantly overshadowed by medical crises and financial hardship. I want my parents to have quality of life and to know that they will be sheltered and cared for. I only ask that you help me buy the time I need to eventually take over the honor of providing that shelter, security, and quality of life for them myself.
My mother is one of the most dedicated, compassionate, and giving people I have ever had the honor and privilege to know. For over thirty years, she gave her time and energy as a bedside nurse. Open-heart surgery forced her into medical retirement from acute-care nursing, but she continued to serve in any caregiving capacity possible for friends, family, and neighbors. She is always just a phone call away for anyone who needs advice, always ready to rush in and help in any way possible, and at the same time, she has cared for me during decades of my own illnesses. Now, she is the patient in critical need, and I am here to ask for your help in saving her life and home. Please don’t feel that any donation is too small, because every cent we raise is a step closer to our goal, and please share this campaign on your social media pages, because each person this reaches may be able to help in some way. Thank you.
We have reason to hope, but our situation remains critical.
My mother is having to continue her at-home IV infusions. While there has been a change in her regimen (please see most recent update for more detailed explanation), and we do have data to show that this treatment plan is working, her infection remains very difficult to kill. As things stand now, she will require the full six months of antibiotic therapy.
We are still fighting to save our home. (Again, please see most recent update). My parents and I have nowhere to go and are too ill to pack and move. All three of us have special needs ranging from mobility limitations to breathing issues that would make relocation nightmarish.
Please know that every donation makes a positive impact, and if you can't donate, please share this campaign on your social media or with friends or any organizations that might be able to help.
Below is a breakdown of what we're trying to raise:
$4000 -- Mom's IV and oral antibiotic regimen plus IV supplies for six months.
$1500 -- Mom's cardiac medication and blood thinner for the six months that she will be in her coverage gap due to the expensive IV medications.
$1000 -- Dad's upcoming medical expenses.
$3000 -- Vital living expenses to keep us safely sheltered while Mom completes her treatment and I serve as full-time caregiver for my parents.
Dad has an important medical appointment in August that should be a step toward stabilizing his condition, and Mom's treatment now has a tentative ending date of late October. My goal is to return to work in early November.
Please continue reading for the full story behind our family's struggle to survive this unexpected medical crisis:
My mother, Marie, is in a life-altering medical crisis. This past October, she discovered a small cut on her right thumb and went to an upper extremity specialist when the finger tripled in size and turned angry red. Her thumb appeared to heal with oral antibiotics, but by November, her entire forearm was swollen and painful. For months Mom suffered chronic, unbearable pain and underwent numerous labs and diagnostics from several specialists. Throughout this time, she continued to get weaker, sicker, and began having difficulty performing even basic daily activities. Holding a toothbrush or a newspaper could make her cry with pain. She lost some function and grip-strength in her right hand. Finally, in late February, pathology of aspirated elbow fluid showed an extremely resistant mycobacterium abscessus group infection. The orthopedic surgeon sent Mom directly to Infectious Disease, where we learned that she will need long-term IV and oral antibiotics and possibly surgery. She will need IV infusions 3 times daily for up to 6 months plus potential IV maintenance therapy beyond that initial treatment. These are dangerous medicines that can cause serious kidney and heart damage, so she will require monitoring and frequent lab work to make sure the therapy is working without poisoning her body. In 2013, Mom had open-heart surgery to repair her mitral valve. If this infection spreads to the ring in Mom’s repaired valve, she will need open-heart surgery and her chances of survival significantly decrease.
For decades, my parents have left no stone unturned trying to provide medical care and raise resources to save my life as I battled life-threatening autoimmune conditions. When I was a toddler, Mom was diagnosed with a heart condition, but she still went into nursing school in her mid-thirties, because she was determined that her only child would have a medical support system at home and access to quality medical care. Since then, Mom has been by my side through oral and periodontal surgeries, diagnostic tests and procedures, multiple hospitalizations, and numerous medical trips out of state, as far away as Denver, Colorado, where I was a respiratory patient at National Jewish Medical and Research Center. Prior to 2016, my parents exhausted our savings and home equity, took out personal loans, and went through retirement funds to cover my lifesaving medical care. They have nothing left but fixed social security income and only the generosity of others kept my fight for life going until I could undergo necessary surgical treatment in Charlotte in December 2017. In recent months, and while I was recovering from surgery, Mom attempted to supplement her social security income as an in-home sitter for a non-acute patient. By early March, her own health condition had deteriorated to the point that she could no longer manage even two shifts of sitting in a week.
Along with the stress of Mom facing this frightening medical condition, we received devastating news that Medicare and her Blue Cross Blue Shield supplement will not pay for at-home infusion therapy. To even start treatment, Mom had to be in the hospital followed by a long-term acute care (LTAC) facility. After nearly four weeks of remaining cardiac stable on telemetry monitoring, Mom was discharged to home for the next round of treatment. Appeals to Medicare by the LTAC's case management team failed to get the IV supplies covered, but finding a different infusion company did reduce Mom's out-of-pocket expense from $1700 to $880 per month. I need to raise at least enough to cover six months of her treatments, because Infectious Disease has advised us that this resistant bacteria can take that long to show susceptibility.
Maintaining Mom and Dad’s Medicare supplements and Part D prescription drug coverage has been a tremendous financial hardship but necessary to give them access to the healthcare and medications they need to survive. We had hoped they were covered against any medical crisis, but this situation with Mom has left us scrambling to gather resources. Not only have Medicare and BCBS failed to provide adequate coverage, but these IV medications will also push Mom into the coverage gap of her prescription drug insurance and make it impossible to afford her expensive cardiac maintenance medications.
Meanwhile, my father, Donnie, is still frail following surgical hip repair last year, and he has a progressive eye condition that has severely limited his vision, so he is unable to supplement the household income. Dad also needs advanced dental care that isn’t covered by his medical insurance.
For nearly two years, even as my health worsened, I held on to a part-time telecommuting job that allowed me to have Affordable Care Act insurance, but this past fall that job changed into an on-site position plus travel, so I had to medically resign in preparation for having surgery. My surgery went well, but I still have chronic health obstacles to overcome before full-time employment is feasible for me. For the foreseeable future, Mom won’t even be able to work as a private-duty sitter. We do not have resources to hire outside assistance, so I am juggling medical appointments for myself and my parents, administering Mom's IV infusions each day, and serving as caregiver, power of attorney, and homemaker for both my parents. While I’m so very grateful that my health has improved enough that I can assist in this way, I also know Mom needs financial support I can’t give. I’m trying to find long-term solutions, but in the past our mortgage holder has been more interested in their bottom line than in critical-need hardship. These strong antibiotics come with numerous side effects and are making Mom extremely ill. I do not want her to have the added fear that we will lose our home, be unable to keep the electricity on, or cover basic living expenses, and I don’t want Dad to worry about having to leave the home where he is comfortable, safe, and able to maintain the little independence he has left.
On April 11, Mom had surgical port placement to prepare for the IV treatments, and we worked with Infectious Disease, Orthopedics, and Cardiology to decide on the best hospital placement for her and to make a decision on surgical options. On April 26th, she went into the hospital, starting with nonsurgical, IVs-only treatment, and came home on May 18th to continue the IV treatment for at least 12 more weeks, with possibly three more months of treatments after that, depending on the results of testing she will undergo in August.
Please help me give my mother the best chance possible to fight this infection. Not only do I want to see her well and completely cleared of this dangerous bacteria, but I also want her to finally have a chance to experience life that isn’t constantly overshadowed by medical crises and financial hardship. I want my parents to have quality of life and to know that they will be sheltered and cared for. I only ask that you help me buy the time I need to eventually take over the honor of providing that shelter, security, and quality of life for them myself.
My mother is one of the most dedicated, compassionate, and giving people I have ever had the honor and privilege to know. For over thirty years, she gave her time and energy as a bedside nurse. Open-heart surgery forced her into medical retirement from acute-care nursing, but she continued to serve in any caregiving capacity possible for friends, family, and neighbors. She is always just a phone call away for anyone who needs advice, always ready to rush in and help in any way possible, and at the same time, she has cared for me during decades of my own illnesses. Now, she is the patient in critical need, and I am here to ask for your help in saving her life and home. Please don’t feel that any donation is too small, because every cent we raise is a step closer to our goal, and please share this campaign on your social media pages, because each person this reaches may be able to help in some way. Thank you.
Organizer
AnnMarie Asbill
Organizer
Columbia, SC