As some of you know, my mom, Janet, was recently hospitalized for 12 days. Janet has a rare autoimmune disorder called Myasthenia Gravis (MG), and she was suffering from a severe flare up for several weeks. The MG was weakening her muscles, making it hard to swallow, hard to lift her arms, shortening her breath, and making it hard to talk. (For those who know my mom, you know she has the gift of gab, so being unable to talk was particularly frustrating for her… and me!) Even though she was seeking treatment, her symptoms only worsened and she was eventually admitted at Mercy Hospital on June 16. By that time, she could barely breathe on her own, she was unable to swallow and had not eaten in several days. She couldn't lift her arms, and she couldn't speak. It didn't take long for the staff at Mercy to realize that they did not have the treatment that Janet needed, so an urgent search began to find a hospital bed at one of the nearby, equipped facilities. Every minute that went by, my mom was closer and closer to being put on a ventilator. Thankfully, a bed opened up at Mercy Hospital in Springfield and Janet was life-flighted to Missouri around midnight. No one was allowed in the helicopter with her, so when she arrived at the hospital, she was alone. And again, she was unable to communicate with the doctors and nurses about her condition. My mom spent the first few days in ICU, in and out of consciousness. She still was barely able to breathe, swallow, or speak. On her first day there, she received a treatment called plasmapheresis, which essentially cleans her blood of harmful antibodies. The doctors installed a port in her neck and for the next 7 days, she received plasmapheresis through that port. Over the next several days, she started to regain her strength. She was able to walk the ICU hallways, she started eating solid foods, and she was finally able to chat with her loved ones and her medical team. Janet was supposed to be discharged on day 8, but unfortunately, as she was packing her things, she became dizzy, out of breath, and lost consciousness. Doctors determined that she suffered a pulmonary embolism, where a blood clot passed through her heart to her lungs. They said had she not been at the hospital when the embolism occurred, she may not have survived. My mom was diagnosed with MG in 2010, when I was just a freshman in high school. During that time, she suffered from stroke like symptoms--muscle weakness in her face that led to facial drooping, slurred speech, and inability to swallow. She found a neurologist in Fort Smith, Dr. Keating, who finally gave us an answer. My mom had a growth on her thymus gland, which was contributing to the MG. She was sent to St. Louis, Missouri to undergo an invasive surgery. She had a sternotomy, where doctors sawed through her sternum and opened her chest cavity to remove the tumor. She underwent several weeks of radiation after the surgery. While that time and that recovery was painful, Janet was relatively symptom free for 7-8 years after. But a few years ago, her symptoms started to return. My mom, under the care of Dr. Keating, tried to manage those symptoms with a cocktail of drugs and antibody infusions called IVIG. At times she was requiring IVIG several times a year, which requires her to miss days of work at a time to sit at the hospital and receive the infusions. Through all of this, my mom hardly ever complained. She kept a positive attitude and continued to be the generous, kind, and hardworking person that we all know her to be. In fact, many of you probably didn't even know that she was undergoing such rigorous treatment these past few years. And while the plasmapheresis in Springfield likely saved her life, that is an emergency treatment that she cannot rely on in the future. Since her IVIG treatments don't seem to be working anymore, she is attempting to get on a new infusion medication. However, insurance has already denied the new medication twice, and she may have to pay out of pocket to receive the care she needs. Unfortunately, this recent flare up was the worst we've ever seen and Janet will have to take several weeks off of work to recover from her ICU stay and her pulmonary embolism. Even though she has health insurance, a 12 day stay in the hospital, several plasmapheresis treatments, and a helicopter ride costs an arm and a leg. And my mom has been undergoing regular treatments for this disease for the last several years, contributing to medical debt. Our fundraising goal is just a guesstimate as to the amount that will help with out of pocket medical expenses and loss of income while she recovers. My mom works hard to take care of herself and those around her. Right now, I would very much appreciate any support that we can give back to her to help her on this long road to recovery. And if you can't give financially, we simply ask that you share this LFEBridge and your thoughts and prayers for her full recovery!
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