He's in so much pain

My brother asked to have an ambulance bring him to the hospital today due to extreme pain in his abdomen, itchiness and dizziness. They gave him a couple doses of dilaudid and even after that he was still yelling in pain in the ER. They drained 4 liters of fluid from his abdomen gave him more pain meds and Benedryl and he still was uncomfortabl, crabby and could've sleep. He's on a clear fluid diet. I was at the hospital for 6 hours then his girlfriend came up to stay for the night. When I called her a bit ago to check on him I heard his yelling and moaning in pain again. They gave him tramidol but it didn't help. I called the nurse asking for more pain meds for him and was told they can't give him much because it could cause worse confusion and hurt his liver more. I understand that but I can't stand to see him in pain like that. The drs aren't very confident with his prognosis. He's lost 40 lbs in 2 months and now weighs 125 lbs. The ER dr said his liver is barely working. I'm almost wondering if it's time to talk to hospice??

Hard to say what actually threw him into a tailspin but my first guess was not taking proper dosages of Lactulose and Xifaxin. From there it's predictable that he'd have mood swings, confusion or even delusional. Factor in empty stomach with nothing but fluid sloshing around in it then toss in some medications. Not a good thing by any stretch of imagination. There just isn't much you can do but hope for the best and plan for the worst. By all means consult with hospice.

Ziff

Cramps, pressure from the ascites pushing every internal organ around, Hernia and any number of things could be going on internally. At two months sober he still has been given high dosages of pain medications. It's possible he's dropped one addiction and substituted another. It's not unheard of for someone to overreact to pain to get the medication they want. My wife who works in a private practice see's this on a daily basis. Not saying it is the problem but something to think about.

Pain is inevitable with folks in his/mine position. Doctors have to find that balance between whats good for the patient without giving in to the addict. Hospice provides that medicated service to transition someone into death peacefully.

We all aren't the same obviously and pain thresholds will be different. I've had my finger tip nearly cut off at work and kept going, leaving the incident unreported. Got a bunch more examples of equally painful scars but nothing compared to the first 6 months of fighting Alcoholic ESLD. Beyond that everything still hurt but you learn to cope. Just like with alcoholism. It's always there, It'll never go away. Coping and living one more day makes the next easier. Not any less dangerous, but easier.



Ziff

I was an hour away from a previous hospital he was in. He and his girlfriend live in the same town as I do. He's now at a local hospital and yes she and I are working as a team on these decisions. She agrees with talking to hospice. That's the next meeting we'll be having.

Yes they have him dilaudid and it helped the pain. Today he seems to not be in much pain but quite confused. Hoping the Lactulose helps that.

He was prescribed tramidol previously but I don't think he was taking them too often, but I'm not certain. The one dr told me it was from the fluid build up pushing on his organs. I don't know.

As of yesterday and today he's not in pain but his confusion has increased dramatically however his amonia levels aren't super high (or so the nurses say 41 isn't too high). He wasn't sleeping much until last night when they gave him some Ativan bevUse he was agitated and kept getting out of bed (too confused to know where he was going). He's still confused today, not sure where he is but knows who I am. Very sleepy too.

Cat, the doc's done 100% depend on ammonia lab numbers. They go more on symptoms. One person can be normal at 100 and other can be completed confused at 50. AND, the test itself is hard to keep correct. They collect the blood and put it right on ice at the draw location and then rush it to the lab. However, if time goes by with a busy lab, or if the ice melts, well the number can be comletely unreliable...so go by symptoms.

Mike took whatever meds they offered for pain IV in hospital, but wouldn't take the pills at home because of the constapation issues. They seemed worse to him than any buzz from the pills. I think he took one oxy..and with his prior history (long ago as it might be), he is reluctant to get into pain meds too much.

Two of the worst episodes with Mike pain wise were pancreatitis. He was in screaming out loud pain and they put him in the hopital, offered meds and nourishment IV and nothing by mouth for 4 or 5 days. With enough morphine or dilaudid, I can't recall, he rested comfortably and returned to a normal diet after. Though those hospital folks get me. You are on IV for 4 or 5 day and then they bring you a stinky greasy mystery meat meatloaf with thick gravy for your first meal. He convinced them that a bowl of cereal with skim milk or a plain chese sandwich on white bread were all he would eat after 5 days of nothing and not to bring in any tray that smelled AT ALL.

Hugs
Mama Lama

I didn't get a chance to update much since I've been spending half days at the hospital, the other half at work and then home with my husband and kids. Not enough hours in the day. Yesterday was a very bad day for my brother. He was SO confused we couldn't even hold a conversation with him. He was so focused on numbers for some reason, kept talking about numbers and reciting numbers. He was refusing to take his meds, didn't want the IV in for his antibiotics, didn't want his nurse touching him. Thankfully after myself, our dad and his girlfriend showed up we were about to get him calm enough to allow the nurse to put the IV in (antibiotics for a UTI). After a bit though, he pulled that IV out. When we weren't in the room with him he'd get up and try walking the halls. We could't have the hospice meeting in his room with him becuase he was just that confused. We decided that at the stage he's at, he needs 24/7 care and can't be left alone. We are looking into a nursing home for him since his girlfriend cannot be home 24/7. Last night they had to put a "sitter" in his room because he kept getting up (he's very unsteady on his feet.......add that to the confusion and it could be dangerous). With the sitter there he kept getting up so they gave him some Ativan and put the wrist restraints on him and he fell asleep.

This morning when I got there I woke him up. He took his meds (he's not taking any pain meds) I ordered his breakfast and he ate it all. First time he had solid food since Monday night. For some strange reason they had him on a clear liquid diet since he got there on Tuesday. He ate all his breakfast and seemed much better mentally compared to yesterday. Still confused but at least today he could talk with me and make some sense. The hospice nurse and Dr stopped by again along with the hospitalist and we were about to talk WITH him about hospice which I was SO happy about. Don't get me wrong.....that's not a happy thing to talk about....but I mean I was glad he got to voice his opinions/questions.
His labs are showing no improvement, in fact they're getting worse. His creatinine levels are raising again too :(

Hi cat girl, do you know what your brothers creatinine level is???

I'm wondering because my dads is 1.58 and I'm not completely sure what this number means.....I know it isn't good.

Thanks!

Thanks cat girl, hope you are ok, I know it's so hard to watch your loved one like this. Please take care of yourself too.