Hello to all, My adult-but-still-young family member was hospitalized for 1 year, 1 month and 1 day (with a few discharges ranging from a few hours to three days) for a number of co-occurring or overlapping serious and life-threatening medical issues in January of 2024. I will refer to them as “They” because they don't know I'm doing this. "They" were released mid-February of this year, and, with a few short hospitalizations since that time, are now able to be at home. Until now, I respected their discomfort at my asking for help in this manner, and have tried to meet our needs while also working full-time. But over time I have developed a deepening and overwhelming sense of hopelessness. I can no longer physically, mentally, emotionally and financially keep up. As a result, both to be at MY best and to help THEM, I am resuming therapy and taking the difficult step of putting this out there on LFEBridge…despite my extreme anxiety, which regretfully borders on shame, at doing so. “They” have end-stage renal disease (ESRD) brought on by long-term use of IV antibiotics that were necessary to treat multiple infections, and now need both a kidney and pancreas transplant (the latter due to insulin-dependent and brittle diabetes.) They undergo four hours of dialysis three days per week. They were evaluated for the Hackensack Meridian Health transplant program but were deemed too weak to be put on the waiting list at present (one must be physically strong enough to withstand surgery at the time they are added to the list. They are not.) They were denied also by Mayo Clinic, where they have been treated in the past, because their Medicaid (unable to work due to illness) doesn’t cover out-of-state treatment. However, they were recently enrolled in Medicare based on the diagnosis of ESRD, and will be permitted to reapply to Mayo six months after their recent denial. Since January, 2024, in addition to ESRD, they have had dozens of surgeries on their feet for osteomyelitis that required the removal of the metatarsal bones in one foot (osteomyelitis is a serious and dangerously progressive bone infection often necessitating amputation); a talis transplant for a shattered ankle in the other foot; and multiple reconstructive surgeries for both, with more to follow. While they were in the ER for the broken ankle, they had to be intubated for a week after their blood sugar dropped to 19, so low that they had seizures and stopped breathing before a doctor walking past the hallway stretcher saw them. Several months later, they had fractures in three vertebrae during a second hypoglycemic episode when it was mistakenly believed they were choking and CPR was performed. They had multiple infections in the dialysis port, an arm surgery for use in dialysis, several sepsis infections and also contracted MRSA. There are several other less severe medical issues that impact the diabetes, ability to attend all dialysis sessions, and general wellness. When not at a doctor’s or dialysis appointment, they are at home in bed or on the couch, exhausted from the exertion required simply to get to and from the car. It continues to be a very long recovery, with a long road ahead as well. They have not seen anyone, family included (with the exception of their Nana), since returning home in February. They leave the house only for dialysis, medical appointments, or occasional rides in the car. They were just provided a script for PT which will hopefully increase their strength and stamina, and now that they have Medicare, we’re working on finding a psychiatrist and mental health therapist. The following is what prompts me to move forward with a LFEBridge page: They will lose Medicaid on Oct. 31, and Medicare doesn’t provide medical transportation. With PT, doctors say they should be able to drive by then, but we have no car that they can use to get to their numerous weekly doctor’s appointments, dialysis sessions and PT. Dialysis alone will be close to $200 per week with Uber or Lyft (based on prior experience when Medical Transport doesn’t show up and we can’t quickly get someone to him.) This isn’t possible financially. Funds collected will be placed in an account in my name and controlled solely by me. They will be used to purchase a used car. If anything remains, it will be used to pay for dental work to repair/replace the front teeth that were knocked out when they were intubated, and to replace clothing that no longer fits them (both are reasons that they are too embarrassed to see anyone); for uncovered medical travel and necessities; and to possibly hire someone to come in to help with housework, shopping, laundry and other necessary chores that can be performed by someone other than me while I'm at work. In lieu of donations, and on behalf of both of us (again, they don’t know I’ve done this), I sincerely and appreciatively welcome positive thoughts, prayers, notes, texts – anything sent from your heart… Thank you for caring! Lynn
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