Get Amanda out of Ohio AND a new heart and liver

Imagine your heart is failing, which in turns causes your liver to fail, and then, as a die hard Wolverine fan, you receive news that you have to move to Ohio indefinitely.

Amanda was born with a congenital heart defect. She had multiple surgeries as a child to stabilize her heart, and has been closely followed by cardiologists her entire life. While Amanda functioned relatively normal her entire life, her heart was never able to be fully repaired. About two and a half years ago, Amanda started having more symptoms related to her heart. One day, while reading a progress note in her patient portal after seeing her cardiologist, she learned she was in heart failure (no one should ever have to find out they are in heart failure this way). This time there was no surgical repair for her heart. As her heart began to struggle more and more, her liver started to fail due to lack of blood flow. Last fall, she received the news that she was in both heart and liver failure. This is not the news any 40-year-old wants to hear.

Amanda took it in stride, working full time, spending time with loved ones, going to medical appointments, and living her life as fully as possible. This spring, Cleveland Clinic agreed to take her case and she found herself being placed on both the heart and liver transplant list. While she needs two organs, they will come from the same donor. The wait for two organs typically is even longer then for one organ. About 5 weeks ago, Amanda’s health took another turn. During a visit with one of her health care providers at Cleveland Clinic, she got more devastating news: she would need to stay in the hospital until her transplant. In that moment, Amanda had her entire world ripped from her. Her family, her home, friends, boyfriend, watching her nephew’s sporting events. She did however, get to keep all of her bills.

Anyone who knows Amanda knows her career has been one of the great joys in her life. For the past 20 years she has worked with individuals with autism, children with severe mental health needs, and she currently provides supervision and direction to the therapists who provide these vital services. Amanda continues to work as much as she can from the hospital and is on intermittent FMLA. But she is very sick. Not all of us can have a bone marrow biopsy and jump on a work meeting two hours later. But this is Amanda's life now. Bills still must be paid. Amanda’s place of employment has been very supportive but there is only so much they can do to secure her job and insurance. Amanda has fought so hard, but there will likely be a point when FMLA runs out. She will have to go on short term disability and that will eventually run out as well. And she will face another devastating reality, possibly losing the career she has loved so much for the past two decades. She will also lose her only source of income and her insurance. All this loss, but the bills will remain. In fact, she will have new bills added to her life. Right now, she is staying in the hospital. However, once a donor is found, Amanda has her new organs, and has been discharged from the hospital, she will have to stay in close to Cleveland for an extended period of time. This will cost a significant amount of money for Amanda and her family. Lodging for these weeks and months will NOT be covered by insurance. Once she is able to come home, she will be making very frequent visits to Cleveland Clinic. She will need frequent heart and liver biopsies. Due to the 4.5-hour drive one way Amanda will have to stay in a hotel the night before her visits so she will be able make it to all the testing. She will be paying for anti-rejection medications. Even if she somehow still has her health insurance, these anti-rejection medications are not completely covered by insurance and are very expensive. A typical transplant patient pays at least 10,000 dollars a year for medications. Her bills will increase significantly at the same time she loses her ability to work. The money from this gofundme will allow Amanda to focus on her health as she fights for her life. No woman at 41 is prepared to face these kinds of challenges. Your thoughts, prayers, and financial donations will mean the world to Amanda and those of us who love her and are supporting her through this devastating time.