Having a bad time of it

I've been trying to post this for about 4 days.  It's been written in my head but it keeps getting jumbled up,I couldn't get my thoughts together to make sense and I couldn't get from head to post.  It has been a very bad week for me but I've been reading all the post every day and wishing I could participate but my thoughts are so scattered and I'm rambling again sorry. New symtoms have been popping up almost daily.  I'm so scared and panicky. I started having sore in my ears and scalp and I don't know what they are. They start about the size of a grain of sand,then red and very tender,sore. Out of no where they burst and all this blood pours out and takes about an hour to stop it. They leave an open indented sore that you can't touch because they hurt so badly. I have enlarged spleen and gallstones.  They won't remove either because my liver is in bad shape and they don't think I'd survive surgery.  Now I'm walking around with a time bomb inside me, they say the spleen could rupture at any time. They say if it ruptures I'll be dead before we could get to the hospital. I'm not sure about medication,they keep putting me on some then taking some off and I get really confused. I've started having these spasms(?) I'm not sure what they are but it feels like I got shocked at the top and then travels all down my body and I loose control of my arms and legs. They spaz out and flap all over the place. I've kicked John a couple of times. On milder ones it maybe only one limb doing it, usually my right leg.They don't seem to be healing. Why all these symptoms?  I feel like I'm spiraling into this dark abyss and can't find my way home. I panic because I'm so afraid that I'm deteriorating a lot quicker then I was originally told.  Also I go into a twilight sleep and start to doze and as I'm resurfacing I hear myself having having a conversation that has nothing to do with anything. John said I'm not mumbling, I'm speaking very loud. My lymph nodes are enlarged from my ear,across the bottom of my jaw and down my neck and stopping in my shoulder.  I can barely swallow and when I do my throat hurts and I have ear pain. I feel like I'm going crazy.  Has anyone else had these problems or know anything about them?  I need help badly.  Thanks for letting me ramble I feel so all alone.    

Thanks Emma

My original dx, 2 years  ago, was cirrhosis but it progressed a lot in the last six months and now it's ESLD.  What is DH? I see everyone using it. Is it the person your taking care of?  My prayers and positive thought I am sending to you. I see you've been going thru it yourself.  God bless you and yours.

Suzi

Thanks Connie

I'm scheduled to see my hepatology and Pulmonary Dr.'s in Gainesville next week.  My memory is so bad that I've been writing ?'s down as I think of them so I won't forget. I have to do that with almost anything anymore.  It seems like everything has snowballed these last 6 months,ever since I had my first varices flare up.  Hopefully I will get some answers when I go to Shands-Gainesville next week.  It's like fear of the unknown but afraid to find out, if that makes any sense.  Thanks again Connie   I like the dear Hubby.

Connie
You are always such a great source of wisdom,common sense,and information. I have another ? When taking lactulose will it flush your other meds out? is there a certain amount of time that should be waited between Lactulose and other meds?

Thanks
Suzi

Big Hugs

Suzi, My husband has been taking it for awhile now. He takes his first dose of the day with his other medications and then more through out the day. It is fine to do so and will not cause the other medications to be flushed from your body.