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Hello Everyone, I am Carol and I hale from SC!

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Posted 6/13/2008 3:25 AM (GMT 0)
Carol, Do some checking on the Adivan it does have some adverse side effects for people. We have learned the hard way, sometimes very vivid nightmares, stomach issues and also feeling like you drank too much. For some its a great drug.
Posted 6/13/2008 3:51 AM (GMT 0)

I used Ativan years ago for anxiety.  My ex-b.f. also took it at one time.  Neither of us had the side effects you mentioned.  The only thing I noticed is that it's hard to get off of it.  The best way is to gradually diminish the mg taken.  At this point, though, that's the least of Terry's problems.  He could try another anti-anxiety med, and if he has no further tummy upsets, etc., then it would seem that the Ativan caused that.  With medications, there is often a lot of trial and error finding something that the individual can tolerate and that also works well.

Hugs,

Connie

Posted 6/15/2008 5:29 PM (GMT 0)
Hello all,
First, where is Shelly? Is she alright?

I have been doing research on Akathisia=excessive urge to move the entire body. This sounds like what is going on with Terry.
It's driving him crazy at bedtime. Has anyone else had any experience with this? JoAnn led me to this by bringing up a drug for Restless Leg Syndrome. She said Jerry used it for some relief of restlessness. I didn't know there was an actual term for this though. 
The ativan doesn't seem to be doing much good, so he is trying benedryl with his Ambien. There is an antihistamine called cyproheptedine that is used for Akathisia. Maybe that is why the Benedryl is working. IDK I will talk with his Dr. ASAP again and they will try something else. I'm going to have to lock up all his meds if I don't find him some relief soon.

Yes, Sue, he is having very vivid dreams and that is bothersom to him too.

Connie, his Rx is for .5mg of Atavin, but still not very liver friendly. How are you doing?

Carol
Posted 6/15/2008 8:29 PM (GMT 0)

Carol, that's a new term to me!  I hope you can find something that will help with that.

I'm doing pretty well, though the drain seems to be partially occluded now...not draining as well as it was, though there's a lot of fluid in my midriff.  I've noticed small pieces of tissue in the collection bulb, so I think that's what is blocking the flow...some tissue in the tubing.  I am just hanging in there until Tues. when I go for follow-up.  Will see what they want to do then.  eyes

Hugs,

Connie

Posted 6/16/2008 1:32 AM (GMT 0)
Hello Carol and Connie
Shelly went to visit her son for a week and got back a few days ago. She's still recovering from the trip. I know that when I go on vacation I need a week at home to recuperate from it. Hopefully she'll feel up to posting soon. I miss her too.

Oh and Happy Father's Day to all of our fathers out there! Hope everyone's day was great.

Both of you have a good evening.
smurf
Posted 6/16/2008 1:53 AM (GMT 0)

Thanks for updating us on Shelly, PG!  She has been missed. 

Hugs,

Connie

Posted 6/16/2008 11:26 AM (GMT 0)
Thank you PG, I'm happy to know she is still with us.

It has been a terrible morning for Terry. I have never seen him like this before. I realize that it can get worse, but I think this is the results of the Ativan oe the Benedryl or the Ambien. I know he took the Benedryl and Ativan, but not yet sure about the Ativan. He is like Sue said, drunk like. He didn't make it from the bed to the bathroom, so I've been cleaning all morning. He is very out of it and off balance. I finally got him back into Mom's bed so he can sleep it off, I hope.

We are supposed to go to MUSC for a liver scan today, but I don't know if we will make it. I don't think he will remember what happened this morning, but I will have to convince him, so that he won't take so many meds again. This Akathisia is really driving him nuts. That is why he got up and took the Benedryl. I think I will have to keep control of his meds myself. He is not going to like that at all.

Mom gets up at 4am and sits at the table until we get up. Today she was crying when I went in there to tell her what was going on. She is homesick and wants to go home. She knows she can't though. She forgot about that when she saw how Terry was. She kept an eye on him while I cleaned up. She is a little worried about being with the hospice volunteers today, if we go to Charleston. At this point, I don't think we will, but I am still having them come, so I can get some things done.

I will call Terry's Dr. today and talk with the nurse. I don't know what else to do. I don't think it was a 911 situation, , but do you think there was something they could have done for him in the ER?

Thanks for listening,

Carol
Posted 6/16/2008 4:14 PM (GMT 0)
Hi Carol,

Just read your post and boy do you have your handsful! I'm soory to hear Terry is not feeling well. I can't emagine having to take care of two sick people, living in the same household! I know how scary it is especially when new syptoms appear. Wil is an insomniac around 5:30 when he gets off work he has to rest for a bit usually in bed by 11:00pm but by 2:00 am he say's he can't sleep and unfortunately has to be at work at 6:30am he has a pool cleaning route in the hot sun until about noon then works in his dads store helping customers util close. I'm wondering if what's going on his so to speak drunk like stupers are that of encethopathy, there are times when Wil, comes over and his speach is slurred and he can't walk straight I notice his hands shake alot. Good luck today at the Dr's. we go 26th and 27th for CT to check for change on the 2 lesions they found on Wil's right anterior lobe. THOUGHTS AND PRAYERS are with you All! Don't forget you need to take care of yourself as well and rest when you can! I know easier said then done.

Thanks for your responce on my post as sometimes I'm not sure if I overreact on issues where these kids have no clue what's ahead of them. Wil, kinda does but, he's in deniel at times. Last night we talked about him signing a medical power of attorney over to me as I've been trying to get this SSI and Medicaid for him. By the time he get's me the deniel letters it is too late and I have to refile all over again. He say's no rush he's got another 5 to 15 years before he needs that stuff anyway sometimes I wonder where his head is at. I don't want to sit around and wait til it is to late, not sure if I should just let it lay for awhile.

Good luck and take care

Huggs and smooches

Toni

Posted 6/16/2008 10:09 PM (GMT 0)

Carol, it does sound as though Terry was definitely over-medicated.  Since the liver doesn't work normally, it can build up toxic doses of meds.  I noticed in the hospital that the 2 Percocets they were giving me every 4 hours, after coming off the morphine and dilaudid pumps, had me feeling drunk.  I just couldn't tolerate that amount.  When I got home, I cut it to 1 Percocet about q 6h with a Lortab in between.  That worked better for me, although I felt a little more pain.  If you have to control the meds, so be it.  Let him know that if he overdoses on meds, it could be a life-threatening situation, or he could hurt himself if he falls.  Stress to him that his body cannot handle meds the way a normal person's can.

Toni, let Will know that the time to take care of POA and that type of thing is BEFORE he needs it...not when.  ;)  Legal paperwork should be done when a person has one's full mental faculties and not when he/she doesn't know what the heck is going on!  Perhaps he is thinking that he will wait until he is married and let HER obtain POA, etc.  Knowing what we do, that's a rather horrifying thought.  So try to get him to see things your way. 

Hugs,

Connie

Posted 6/17/2008 5:09 AM (GMT 0)

  eyes   It just occured to me as I was reading, "What am I going to do with Mom, if I have to get Terry to the ER."  Hospice only works 9-5.  I have no family close enough to come on a moments notice. My friends are associates from Wal-Mart and they all have to report to work. I really need to figure this one out.  I better call a caregiving service and ask about emergensy services. I can't think of everything. There is a nursing home just 1/2 mile up the road. I'll look into that. Maybe they can help.

We did make it to MUSC, but only because we had enough time for Terry to slowly recover and get himself ready. He told me that he did fall in the shower though, but didn't hurt himself. He just wouldn't let me help him. It took him forever to plug in his phone for recharghing. He did it all by himself, while I was helping Mom and greeting our Hospice Vol in my nightgown and sneakers. She was great. I liked her as soon as I saw her. She & Mom got along wonderfully.

The news from the liver scan is great. The radiofrequency ablation got rid of the tumor where chemoembolization did not. The part that is in his portal vein is still there and nothing they can do for that. Hopefully the Nexavar will keep it under control, if he can keep tollerating it. Bad news is, he is still having terrible stomach pains tonight. I don't yet know what to do about that. I wouldn't let him take the Ativan tonight. He took 1 oxycodone and tried to sleep, but he got up and asked for another one. Now he is asleep in the chair.  

I stopped by the Dr's office this evening and told them what happened and they gave him a Rx for Valium.  He's not crazy about taking it though. When he was young and wild & crazy he did a lot of drugs and remembers how they effected him. He said that I'm lible to find him asleep out in the middle of the highway. I know he can't even do Sudafed because it makes him do strange things. He said he would try "1" tomorrow because I have to get up early and take Mom to her Dr. and I don't want a recurrance of this morning, if we can help it.  It's 5mg. How strong is that? I've never done drugs and really have to study to find out about them. I do know how the liver can hold back on them. That happened to him after his first chemoembolization. He started hallucinating as we were walking down the hallway of the hospital for exercise. It scared him so bad, he asked me to take him back to his room, because something was after him. 

Connie, I'm sure that you & Terry could have some good conversations about the "good ole days." That just wasn't my lifestyle.. I just started working early and stayed that way. I only partied a very little bit.  We had to pay rent to live at home after we started working and that's what most of us did. I had 1 brother that partied and he had to go to job corps. He's doing great now, but he married a crazy woman and we rarely hear from him. He's only 3 hours away and he doesn't even know Mom is here.

Toni, Connie has great advice for both of us. I too have put off the legal stuff. I have a lot of the papers to do it ourselves, but I just don't trust myself to do it correctly. I made sure that Mom & Dad did it and I had my DPOA for Dad and his DNR and Living Will and now Mom, but I still  haven't gotten it done for us. I just keep forgetting about it. I'm going to go and make a big reminder note right now and get it done soon, with a lawyer. Ask me later, if I did it. So much to do that we forget about the more important things. Get er done!!!

If anyone read all of this, maybe you're more hard up than I am for some kind of conversation.

If you have any advice, it would be much appreciated, especially about Terry's stomach pains.The oxycodone seems to working tonight.

Bless you all and your families,

Carol 

Posted 6/20/2008 2:05 AM (GMT 0)
I received Terry's report today from his liver scan on Monday. His AFP level is down to 8.4 with 8 being normal! The tumor is non existant. Come back in 2 months for another scan.
All his blood work is still consistant with HepC and Chirrosis though. He will stay on the Nexevar for a while though.
He tried the Valium last night and he said he didn't know why he was doing it, but he would get up and go sleep on the floor in another room and then on the dog pillows in the family room. He's trying Benedryl again tonight.
Mom's comfort pack and Meds from Hospice arrived today. I have a virtual drug store here now. Neither one of them can keep their own meds too straight. That is a total of 22 meds for me to keep track of. Plus my 3 and my vitamins and supplements. Oh Boy!!!

Have a good evening all,
Carol
Posted 6/20/2008 2:37 AM (GMT 0)
Carol, now be careful with all those drugs! You mught be the next one on the dog pillows sleeping, although by now that might be a good idea hhhmmm actually maybe its a good thing I dont have them. Its my turn to be naked in the garden..... well some times I dont need drugs for that :))!!
Sue
Posted 6/20/2008 2:48 AM (GMT 0)
Hi Sue,
Yes, I promise to leave their drugs alone. Terry teases me about steeling them. If I did there drugs, who would take care of me?!! "The Police!" Can't handle that.
I'm turning in. I think Terry wants me up there with him tonight. He just came to check on me.

Talk to you all tomorrow,
Carol
Posted 6/20/2008 4:57 AM (GMT 0)

Carol, I just wanted to say how pleased I am that Terry's results showed no tumor!  Woo hoo!!   :-)

Hugs,

Connie

Posted 6/21/2008 4:03 AM (GMT 0)
Thank you Connie,

I was sure you would understand how thankful I am for the results. Terry doesn't really believe it yet. I guess that's because he still feels rotten.
Connie, do you know anything that I can say to him to lift his spirits? I'm running out of spiritual uplifting things to say. This has been a hard 2 weeks for all 3 us. Terry & I haven't had much close time. He understands though. He is just upset because he can't sleep at night because of the hebe gebes. Nothing is working for that yet. Do you ever have that feeling, like something is crawling all inside of you?
I hope you are and your cats are all culled in for the night,
Carol
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