Firstly, what a really informative forum, thank you.
I would like to help my friend who has decompensated cirrhosis (diagnosis in 2015) and has severe ascites requiring frequent LVP drains. It seems that the only way she is accessing this treatment is via the A&E or EAU route (whereby she is already in pain, breathless, unable to keep food down) and having to wait several hours or well into the next day on a trolley before a bed can be found on the appropriate ward to deal with her treatment.
Since the start of the year her condition has deteriorated and apart from the huge abdominal distension and swelling in her legs she is skeletal in appearance and now either walking with sticks or a frame or being wheelchair bound on bad days. I have tried to contact the hospital Dr who she is under and PALS but I wonder if there is anything else that can be done.
I am probably very naïve but I would have thought the LVP procedure would be more regular (she needs them weekly at least) and that pre-planned appointments be arranged for LVP drains and not having to go through A&E every time. She has other medical conditions and so her care regimen is very complicated due to this. She is being considered for TIPS procedure but the TIPS consultant wants to see her kidney function improve first. It seems like she is caught in a revolving door but not actually getting anywhere in the meantime her health is deteriorating and quality of life is very poor.