suzyq1481

We found a specialist at the UF Health Liver Cancer Center in Orlando (It used to be MD Anderson in Orlando). He seems to know what he’s talking about a lot more than the oncologist from FL Hospital. My mother is super swollen. It started in her legs, moved to her belly, and is in her right hand now. The leg swelling is kind of controllable with elevation and compression hose, however her belly is so swollen we feel like it must be causing some discomfort. The doctor did an ultrasound with the possibility of doing a paracentesis, but there was no fluid to draw out. So, he added another diuretic, to hopefully decrease some of the swelling. He also decreased her pain meds to just percacet to see how that works, so far it seems to be doing fine (we can still take the others if necessary). Without the long acting morphine she seems to be waking up a bit, but still isn’t all with it like she used to be. We’re hoping that she’ll at least stay awake during the day more and sleep more at night. He also staged her at Stage 4, when her thought she had ascites, but now we realize it’s not ascites and have an appointment on Tuesday to see what else can be done and if she’s still Stage 4. Has anyone else had experience with this swelling? And, what did you do for it? Also, she’s not a candidate for any treatment besides comfort care because she doesn’t get up or do anything on her own right now, so we’re trying to get her a little stronger, but she doesn’t want to get up or eat. She only wants to eat fruit and popsicles, so we’re giving her fruit cups, applesauce, and popsicles, then we also give her ensure (one medicine cup at a time throughout the day), a liquid multivitamin, and a protein powder made into a pudding that she eats throughout the day. But, that’s about all we can get into her, we can never get her over 800 calories. Does anyone have any suggestions on small meals with dense nutrition? Thanks.

No mention of hospice from the onc. The gp mentioned it a few weeks ago, but kind of just in passing and we were so optimistic we ignored it. I hope we can get to Johns Hopkins and they can fix her before it’s too late.

My aunt comes about once a week, and is helping me get her into JH. My stepdad is also here, but works full time and comes to the hospital for about 2-3 hours at night. He also is from another country and doesn’t really understand our healthcare system, and has a hard time with medical terms. We have good church support that comes to visit once or twice a week, and my moms good friend comes a few times a week to visit. But when it comes to her actual care, it’s really just me.

Thanks for your responses.

She is back in the hospital right now because her INR was 14. That is back to normal now, but she can’t take coumadin, so the docs are trying to find a blood thinner she can take. Her ammonia level was 53, so they gave her lacatalose and ammonia is back to normal. Her belly is getting softer now, and she’s started eating again. But, she still is confused. She’s on 15mg long release morphine twice a day, as well as percocet as needed for breakthrough pain, and celexa (basically because she was taking that before she got sick). I think her pain meds and celexa need to be reevaluated. Today they found that her sodium level was low, so they took her off of the diruetic, and are going to moniter her.

It’s really difficult seeing her like this. She cries a lot when she gets confused. I’m her only child, so I’m here with her ALL the time, and get to experience all of it. We’re hoping Johns Hopkins can get us in soon.