Donation protected
Beautiful, Strong, and Courageous! If I had to choose three words to describe my sister, Lacey, those would be the ones I would pick. They describe her perfectly! I’m sure most of you who read this would agree! If you’ve met her, you know that she’s a very special lady. If you haven’t met her, I guarantee you would love her.
Much to our dismay, nine years ago, at the age of eighteen, our energetic and full of life Lacey-girl was diagnosed with Microscopic Polyangiitis (MPA), a rare, non- genetic disease. So rare, that only 3.6 cases per million persons occur annually. MPA is the result of blood vessel inflammation (vasculitis), which can damage various organs and systems throughout the body. The area’s most commonly affected by MPA include the kidneys, sinuses, lungs, nerves, skin, and joints. In Lacey’s case, the disease struck her kidneys, resulting in end-stage renal failure. She endured six excruciating months filled with constant hospital visits and hundreds of hours hooked up to a dialysis machine. Instead of celebrating her 19th birthday surrounded by friends, food, and fun, she was in an operating room, receiving a life-saving kidney, generously donated by her Aunt Shelly. (Thank you Shelly!! We love you!) Post transplant, Lacey was able to establish a fairly normal routine that didn’t completely restrict her from doing common day to day tasks and activities. Although she had to take several medications morning, noon, and night, followed a special renal diet, and attended multiple doctor appointments weekly, she felt optimistic she could make the best out of her second chance at life. Lacey worked multiple jobs as she pursued a degree to become an art teacher. She was on her own and truly making something of herself. All was well, and it was a huge relief for her and all of our family and friends. Being diagnosed with such a rare and uncommon disease at such a young age was heartbreaking for everyone, but she’s tough and she pulled through.
However, due to some unforeseen circumstances, Lacey’s transplanted kidney started to fail in October 2015. Eventually, it quit working entirely. After a failed attempt at peritoneal dialysis, a nephrectomy (removal) of the failed kidney, and a fistula surgery, Lacey was finally able to successfully start hemodialysis. She has been going to dialysis three days a week since January 1st, 2016. Though she’s grateful her fistula has had few issues, hemodialysis regularly results in nausea, headaches, extreme fatigue, vertigo and the harsh reality that the life she’s currently living is far from the expectations she had hoped for. Ultimately, due to worsening conditions, she had to quit her job and move back home with her mom, Stacey.
Within the last four weeks, her condition has deteriorated rapidly. More recently, she’s been having debilitating frontal migraines due to extreme hypertension, fluid build up around her already enlarged heart, and excessive fluid retention in her extremities. She has been terribly sick and in a tremendous amount of pain. Just since this past Wednesday (May 30), she has had to make 3 trips to the Emergency Room. She underwent several tests and was given more medication to try and relieve her symptoms and get her feeling better. It wasn’t enough. Saturday, June 2, Lacey was taken to the hospital by ambulance and eventually she had to be rushed to a hospital in Omaha. She had been sedated for almost two full days and was intubated. Her blood pressure was extremely high, and she wasn’t breathing correctly. She was in so much pain that she physically and mentally couldn’t bear it. The breathing tube has since been removed and she is comfortable, but doctors have still been unable to control her blood pressure successfully and she is still suffering the near constant migraines and nausea. After several tests, CT scans, and an MRI, they were able to make a diagnosis. She now has Posterior Reversible Encephalopathy Syndrome (PRES), swelling of the vessels in the back of the her brain caused by uncontrolled hypertension despite the fact that she is taking 4 medications daily to alleviate the high blood pressure. The PRES actually caused her to lose her vision for several hours, but thankfully that was a temporary effect of this diagnosis. The fluctuations in her blood pressure are directly related to her desperate need for a kidney transplant. She’s been under so much stress and pressure, and in so much pain and discomfort and it’s taking a huge toll on the rest of her body.
Many of you are probably wondering why she hasn’t had a transplant. She is at the top of the transplant list at the hospital and also has several people ready and willing to be tested to donate their kidney. However, due to our wonderful government, she has been unable to get approved for the Medicaid coverage that she HAS to have in order to get the transplant. They absolutely will not do the transplant if she doesn’t have coverage. Getting her approved for Medicaid is paramount, it is the only insurance she can have because she is unable work. HHS has been beating around the bush on getting her approved to get the transplant. Why? We have no idea! They continuously need updated paperwork, which has been turned in to their exact requirements, several times. She will turn in everything they ask for, and then they say we will get to work on this, but it’s been two years, and they still haven’t approved it. We are all extremely frustrated and just don’t understand what the hold up is. Lacey is only 27 years old and has had to go through so much already. She doesn’t deserve any of it. She didn’t deserve to get sick in the first place. It’s unfair and we will never understand why, but we do know that we can’t change it, and all we can do is help her to the best of our abilities. I know I would give anything to take her place and take her pain away, but I can’t. Many others would too. She so sweet and so caring and has not been able to live her life to the fullest. It’s heartbreaking! It’s frustrating! And it just down right makes me angry! I am a firm believer in, “everything happens for a reason,” and I know she is going to pull through and be okay. I just hope it’s soon. She’s been through enough! It’s time for her to catch a break and be able to live her life! She’s had a tough time these past several years, and still has a long and tough road ahead of her, but she’s strong and courageous and she will get through this.
I am asking for donations for Lacey. She has medical bills like you can’t imagine, prescriptions to pay for, bills for her several weekly treatments of dialysis, and now more hospital bills. She also has her daily living expenses. All donations will go directly to Lacey. We can’t take her sickness away, and we can’t take her pain away, but we can try to lessen the burden of the expenses. Once Lacey's immediate needs are taken care of, any additional funds will be set aside for her dialysis sessions which cost between $6,000-$10,000 and for when she receives her transplant. Any little bit will help. We would also greatly appreciate your prayers and any words of wisdom, support or advice that you would like to share!
Please share this post as well!
Thank you much for taking the time to read this and for all of your help!
We all love you so much Lacey!!
Microscopic Polyangiitis Statistics
What is Microscopic Polyangiitis?
Much to our dismay, nine years ago, at the age of eighteen, our energetic and full of life Lacey-girl was diagnosed with Microscopic Polyangiitis (MPA), a rare, non- genetic disease. So rare, that only 3.6 cases per million persons occur annually. MPA is the result of blood vessel inflammation (vasculitis), which can damage various organs and systems throughout the body. The area’s most commonly affected by MPA include the kidneys, sinuses, lungs, nerves, skin, and joints. In Lacey’s case, the disease struck her kidneys, resulting in end-stage renal failure. She endured six excruciating months filled with constant hospital visits and hundreds of hours hooked up to a dialysis machine. Instead of celebrating her 19th birthday surrounded by friends, food, and fun, she was in an operating room, receiving a life-saving kidney, generously donated by her Aunt Shelly. (Thank you Shelly!! We love you!) Post transplant, Lacey was able to establish a fairly normal routine that didn’t completely restrict her from doing common day to day tasks and activities. Although she had to take several medications morning, noon, and night, followed a special renal diet, and attended multiple doctor appointments weekly, she felt optimistic she could make the best out of her second chance at life. Lacey worked multiple jobs as she pursued a degree to become an art teacher. She was on her own and truly making something of herself. All was well, and it was a huge relief for her and all of our family and friends. Being diagnosed with such a rare and uncommon disease at such a young age was heartbreaking for everyone, but she’s tough and she pulled through.
However, due to some unforeseen circumstances, Lacey’s transplanted kidney started to fail in October 2015. Eventually, it quit working entirely. After a failed attempt at peritoneal dialysis, a nephrectomy (removal) of the failed kidney, and a fistula surgery, Lacey was finally able to successfully start hemodialysis. She has been going to dialysis three days a week since January 1st, 2016. Though she’s grateful her fistula has had few issues, hemodialysis regularly results in nausea, headaches, extreme fatigue, vertigo and the harsh reality that the life she’s currently living is far from the expectations she had hoped for. Ultimately, due to worsening conditions, she had to quit her job and move back home with her mom, Stacey.
Within the last four weeks, her condition has deteriorated rapidly. More recently, she’s been having debilitating frontal migraines due to extreme hypertension, fluid build up around her already enlarged heart, and excessive fluid retention in her extremities. She has been terribly sick and in a tremendous amount of pain. Just since this past Wednesday (May 30), she has had to make 3 trips to the Emergency Room. She underwent several tests and was given more medication to try and relieve her symptoms and get her feeling better. It wasn’t enough. Saturday, June 2, Lacey was taken to the hospital by ambulance and eventually she had to be rushed to a hospital in Omaha. She had been sedated for almost two full days and was intubated. Her blood pressure was extremely high, and she wasn’t breathing correctly. She was in so much pain that she physically and mentally couldn’t bear it. The breathing tube has since been removed and she is comfortable, but doctors have still been unable to control her blood pressure successfully and she is still suffering the near constant migraines and nausea. After several tests, CT scans, and an MRI, they were able to make a diagnosis. She now has Posterior Reversible Encephalopathy Syndrome (PRES), swelling of the vessels in the back of the her brain caused by uncontrolled hypertension despite the fact that she is taking 4 medications daily to alleviate the high blood pressure. The PRES actually caused her to lose her vision for several hours, but thankfully that was a temporary effect of this diagnosis. The fluctuations in her blood pressure are directly related to her desperate need for a kidney transplant. She’s been under so much stress and pressure, and in so much pain and discomfort and it’s taking a huge toll on the rest of her body.
Many of you are probably wondering why she hasn’t had a transplant. She is at the top of the transplant list at the hospital and also has several people ready and willing to be tested to donate their kidney. However, due to our wonderful government, she has been unable to get approved for the Medicaid coverage that she HAS to have in order to get the transplant. They absolutely will not do the transplant if she doesn’t have coverage. Getting her approved for Medicaid is paramount, it is the only insurance she can have because she is unable work. HHS has been beating around the bush on getting her approved to get the transplant. Why? We have no idea! They continuously need updated paperwork, which has been turned in to their exact requirements, several times. She will turn in everything they ask for, and then they say we will get to work on this, but it’s been two years, and they still haven’t approved it. We are all extremely frustrated and just don’t understand what the hold up is. Lacey is only 27 years old and has had to go through so much already. She doesn’t deserve any of it. She didn’t deserve to get sick in the first place. It’s unfair and we will never understand why, but we do know that we can’t change it, and all we can do is help her to the best of our abilities. I know I would give anything to take her place and take her pain away, but I can’t. Many others would too. She so sweet and so caring and has not been able to live her life to the fullest. It’s heartbreaking! It’s frustrating! And it just down right makes me angry! I am a firm believer in, “everything happens for a reason,” and I know she is going to pull through and be okay. I just hope it’s soon. She’s been through enough! It’s time for her to catch a break and be able to live her life! She’s had a tough time these past several years, and still has a long and tough road ahead of her, but she’s strong and courageous and she will get through this.
I am asking for donations for Lacey. She has medical bills like you can’t imagine, prescriptions to pay for, bills for her several weekly treatments of dialysis, and now more hospital bills. She also has her daily living expenses. All donations will go directly to Lacey. We can’t take her sickness away, and we can’t take her pain away, but we can try to lessen the burden of the expenses. Once Lacey's immediate needs are taken care of, any additional funds will be set aside for her dialysis sessions which cost between $6,000-$10,000 and for when she receives her transplant. Any little bit will help. We would also greatly appreciate your prayers and any words of wisdom, support or advice that you would like to share!
Please share this post as well!
Thank you much for taking the time to read this and for all of your help!
We all love you so much Lacey!!
Microscopic Polyangiitis Statistics
What is Microscopic Polyangiitis?
Co-organizers (4)
Beth Proffitt
Organizer
Fullerton, NE
Lacey Keeler
Beneficiary
Stacey Lovewell
Co-organizer
Courtney Lovewell
Co-organizer
Courtney Lovewell
Co-organizer