Let me tell you about my best friend, Amanda. She has been battling gastroparesis for quite some time now. For those of you who do not know what gastroparesis is, it is a condition where your stomach's motility is slowed down or doesn't work at all, preventing your stomach from emptying properly. When Amanda's stomach doesn't empty, it causes her to puke up everything, and nothing gets absorbed for nutrients. She can not eat, drink, or intake anything through her mouth. She gets all her nutrients from a PICC line that delivers TPN directly to her veins but has had many complications over the years, including blood clots, bactermia, and sepsis. Over the past decade, she has been dealing with chronic illness. She has autoimmune refractory idiopathic gastroparesis, POTS, IBS, a hiatal hernia, and AGID(autoimmune gastro intestinal dysmotility. She has had numerous procedures and surgeries, including a GPoem, gastric stimulator placement, ileostomy, gtube, jtubes(tube feeds were a failure).
Currently, she is in the hospital with debilitating symptoms. The doctors have just informed us that there is nothing further we can do. "Advantage" Aetna Medicare is currently not agreeing to cover the best place for her to go, an acute hospital who can administer TPN to prolong her life (she was hoping to be able to meet her new nephew this January). Since they are not covering it, she will most likely be at Mt. Sinai for palliative care for as long as they can. She is pretty dependent on the iv meds to function.
It looks like the plan is for her to ultimately go to “comfort care” or hospice for end-of-life care, stop any treatment and TPN, and get her comfortable and relaxed for a peaceful transition.
Her husband Chris has truly bought new meaning to “for better or worse” and “in sickness and health.” Whether he’s setting alarms to draw up Amanda's meds and set up TPN (sometimes she is sleeping and he’s careful not to wake her), bringing her anything she needs in the hospital, giving her neck and shoulder massages after being hunched over vomiting all day, to helping her wash herself, carrying her down the stairs she can’t walk, pushing her wheelchair, and always at her side loving her, supporting her, and rooting for her. He is fantastic, and this is extremely hard for him, along with all of the many people that love Amanda.
"I love you all and am at peace with this decision and glad to have some control over what will happen (we are of course going through the stages of grief and some times are tougher than others to find the acceptance but we’re handling best we can)"- Amanda
We are raising funds to help cover the cost of Amanda's medical expenses, and end-of-life care. 100% of the funds donated will go directly to Amanda and Chris for ongoing medical expenses, end-of-life care, and Amanda's funeral services.
More info will be added here as I get it.
Thanks for helping support Amanda.