I don’t know how far or to whom the video and/or this GoFundMe will be shared. So let me just tell you that RACHEL has epidermolysis bullosa (EB) and that she relies on the care that her nurse provides. The funding for Rachel's nurse was ELIMINATED by being redirected to the opioid epidemic. We have had the same nurse for over 10 years for Rachel. Before Nurse Kathe, we had a difficult time finding and keeping competent, compassionate nurses. Rachel's nurse is her 2nd mom and sometimes her 1st mom! Rachel lives alone and in fact bought her home close to her nurse so her nurse wouldn't have to drive 45-60 minutes to provide Rachel's care when Rachel lived with me. At the time of this video, Rachel wouldn't let me do a GoFundMe for her nursing cost (Rachel doesn't like to ask for help). So we paid the $1800.00 for the month out-of-pocket for nursing services. We thought that while Rachel was appealing, that the county would pay the nurse or reimburse us for the out-of-pocket expense. As of August: A county organization provided an attorney for Rachel to help with the appeal. Medicaid and Medicare agree that a nurse is needed but can't agree on which of those agencies will pay for it. In the meantime Rachel was told that NO money paid out-of-pocket for nursing services will be reimbursed (we weren't expecting this) while the agencies and attorney figure this out.
Rachel lives on her lives on her own, has her own home, her own vehicle, works part-time, travels (she and her nurse drove to Arizona this summer for a medical conference and she flew to California for 16 day medical trial). All this is possible because she has a nurse who loves her and whom she loves. Rachel says in the video that her nurse/nursing care is what keeps her alive. This is very difficult for Rachel to say and for me to hear. But it is true. Kathe helps Rachel take off soiled dressings and put on new dressings. Kathe helps Rachel monitor her skin for infections. Kathe helps Rachel monitor her skin for cancer (a serious concern for people with EB). Kathe pops blisters for Rachel. Kathe spends 18-20 hours a week caring for Rachel three times a week. When Rachel thought her puppy pulled out her PICC line (direct IV line surgically placed for long-term IV meds) she drove to her nurse's house so Kathe could assess the line. When Rachel is in the hospital, it is true that the hospital won't/can't do her dressing changes - they can't allocate one nurse to do a 5-hour procedure. So if I'm not available to do the dressing changes, Kathe will drive the 90 minutes to the hospital to do Rachel's dressing changes. Rachel has a procedure at the hospital on 9/4 and I can't take her (it is the first day of school for me) so her nurse is taking her for me.
Rachel called me on 8/30 for advice: She has a puppy that will be trained as a service dog for her. (She's at a point where she decided she needs things picked up off the floor, doors opened/closed, and something to lean on and stabilize her while she is standing or getting up from sitting.) She wanted to know what to do as the training is $2000.00 and nursing services are $1800.00. She needs both things but can't afford both. She knew the dog expense but had no idea the nursing would be out-of-pocket until resolved (and not reimbursed). I told her to send the puppy to training and we would figure out something for the nursing expense.
So here goes: Rachel has agreed to let me do a GoFundMe for her nursing expenses. This is difficult for her to accept and for me to ask. So she and I have swallowed our pride and I will be setting up a GoFundMe for her in the next day or two for anyone who'd like to help. Please feel free to share this post. Thank you.
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