I dont know if anyone can help but i have a very terminally sick gret-niece who is 29 years old and doesnt have much time left. she was diagnosed about 6 years ago out of the blue, with two very rare types of Fibrosis, Retroperitoneal Fibrosis & Mesenteric Fibrosis. She’s been told that the meds she’s taking (more than 30/day) will only slow the disease down but that diseases would eventually be terminal. Recently we’ve found out that the disease has gotten much worse. She has a pain pump surgically attached to her spine for a constant and direct drip to help manage her pain; she has to use a catheter to go to the bathroom now as the fibrosis has shut her urethra down; she has a feeding tube in her stomach as she can’t eat sometimes and needs to get nourishment somehow; she has a Medi-Port surgically implanted in her chest that has been removed and replaced a half dozen times so she has scars all over her chest now (devastating for a woman) for certain IV meds she has to take every 4 hours; they found a 14 inch blood clot in her leg two weeks ago they they dissolved after 3 consecutive surgeries in three days, and is in chronic pain all the time. We also just found out she has 5 more blood clots in her body and some kind of mass on her lower aorta. She usually spends about an average of 4 months a year in the hospital or in bed but when she is not in the hospital she tries her best to stay positive and is very much active during the day.
She’s been to Johns Hopkins and many other specialists throughout the country but there’s just no one out there that knows anything about these diseases. I’ve never been more scared for her till now; it just does not look good. We even talked the other night about what she wants at her funeral and whether or not she wants to be cremated.
If there is any way i/we could get Kid Rock to meet her before she passes it would mean the world to me...and her.