Posted 12/5/2020 8:47 PM (GMT -7)
Hello all. I don't know where to start other than telling you I've had to watch my daughter's ongoing nightmare with CVID (Common variable immunodeficiency) that just goes on and on and on. She also has some sort of Lung disease on top of it. Her fiancé describes it as such.
"So to update, her spleen is enlarged and according to the consultation the largest that he had ever seen. Despite its importance, especially with her auto immune, its been decided that its putting her life in jeopardy. She goes in next week to have it removed. On top of everything she was in a fairly serious car accident. Fortunately the accident did not cause a burst... This is just a factor in a multifaceted decline that she has faced starting with with a hospital visit in February, 4 surgeries, dozens of doctors visits, pain scars, oxygen and over 300k of medical work."
She is in constant pain as she TRIES to recover from the removal of her Spleen. The doctors don't know why her Spleen went crazy, it was 14 inches long and took over her entire abdomen. She had an incision from just below her breasts all the way down near her privates and then to the left side a bit. They had to rearrange everything that was displaced. She spent 2 weeks with me trying to recover and did a pretty good job of it. But then she went back home to a crowded house of stress and a 2 year old to chase! OMG I don't even know how to describe her situation or where to even start!! Since going home, she's had an infection that pretty much made the progress she had here null and void. She can't eat, is always nauseous and also always hungry!! She's miserable EVERY SINGLE DAY but can't come back here because she has to have a nurse come everyday and pack her "wounds" from the surgery and procedures to drain pockets of puss (?) and insurance won't cover it from here because I live too far away!
Too many other details to describe. Let's just say 2020, Murphy's Law, and the Devil himself orchestrated this whole situation! I am BESIDE myself in frustration and worry! My head and heart hurt for her!! But there's not much I can do to help...Sorry, I'd need to write an entire book to describe all the facets of the chaos she is living in.
I guess I just need to vent. Sorry, I don't know all the medical terms. HOW DO YOU HELP SOMEONE DEAL WITH EXTREME CHRONIC PAIN LIKE THIS??