Update on Brother with ALD

First of all, I don't really care for the LTAC facility my brother is at, however he seems to like it there. I can't get there to visit him as much as I would like to as it is an hour and a half away. Getting dr's and nurses to return my call is not easy either. I don't like how confused he is sounding on the phone when I talk to him and most times when I mention that to his daily nurse their response is "he seems fine to me, he knows where he is and who the president is". As of last week Thursday he's been refusing physical therapy, he says he doesn't like being around all the old people. But it's not good for him to just lay in bed and sleep so much. They drained another 3 liters out of him on Friday, prior to that the last drain of 3.5 liters was on 5/8 roughly a week prior. How often do patients with these issues normally have to have that done? Both times they've had to give him fresh frozen plasma before the procedure as his INR is still high. MELD is still at 33, INR 3.4, billirubin 20, creatinine 1.2, ALT 33, ALP 134, AST 79. He's currently getting lactulose, he's on a 1 liter a day fluid restriction, blood pressureis OK for him, he's taking meds for that. And he's on an antibiotic because he white blood count is high. He's been requesting pain meds (tramidol) daily it sounds. And sleeping pills at night. He told his nurse this morning when she asked if he's in pain....he responded yes, all over. That concerns me. I'm concerned about how much he's sleeping, the confusion and the fact that he started refusing physical rehab since last week Thursday. There's talk of releasing him to a nursing facility soon, they say medically he doesn't need to be in an LTAC, but if he refuses physical therapy they may not take him. I don't know what to think at this point....

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I updated your post to give it a more recognizable title. Okay? ML

Post Edited By Moderator (MamaLama) : 5/21/2014 1:58:34 PM (GMT-6)

I don't believe he's on any diuretics right now. His diet....that's hard to say. Again I only talk to him on the phone. He claims he's eating well, but when his girlfriend visits him and the last time I visited him he wasn't eating much, a few bites of things but then he'd get full (from the extra fluid). they're only taking 3-3.5 liters at a time. He has more, but they won't take larger amounts for fear that his kidneys will not tolerate it since he was having kidney issues prior which have improved since then.

If he is on fluid restriction, he likely has low sodium. This is a delicate issue....where the cells are holding fluids and not allowing electrolytes cross into and out of the cells normally, thus keeping nutrients for life away from their many jobs in our cells. With the restricted fluids they are hoping to normalize the fluids moving in and out of the cells. I am not certain when you have that condition they can administer diuretics safely...I'm no doc, but Mike went through this a couple of times. One day he had edema to his knees and another he had that Hyponatremia. Here is a technical description: en.wikipedia.org/wiki/Hyponatremia

Is your brother getting albumin after a tap?

I would question the fluid restriction of one litre, sounds a bit too little to me, when they did that to my brother they about fried his kidneys. The doctor admitted the mistake (he was a covering weekend hospitalist) and did apologize. His kidneys started to do better once the transplant team was back on the case (can't remember exactly how) and they increased his fluids of course.

Maybe you should arrange for your brother to sign something where you are allowed to ask questions without violating HiPA laws, especially if he becomes encephalopathic.

I know his sodium levels were low which was my understanding for the fluid restriction. I will specifically question the nurse today about the diuretics, however, yesterday when I asked what meds he's given she didn't mention any. I have health care POA so they will answer any and all of my questions.
I know he was having trouble breathing from the ascites, so maybe that's shy they chose to do the paracentesis. I do believe he was getting albumin as well. The last time I spoke with his kidney dr he said his kidneys were improving and his creatinine is 1.2.

He's to stable to move? That makes no sense at all. I was completely out of it when they transported me to another hospital a hour away.


Ziff

So I think they mean he can come to the Evaluation as an Outpatient becasue he is more stable. And the LTAC is saying he really can't stay there much more becasue he is stable. So would you take him home and try to keep him with you until an appoinotment came up, or take him to a nursing home and transport him on Thursdays for the evaluations...will a nursing home do that...take them to doctor's appointments? I think they may.

You stilll have a lot of coordination to do.

The doc is right, though he is stable, at MELD 30 is is a fragile medical miracle right now....to be alive through all this. That his kidneys are working is another miracle. The sodium lower range is 135 I think. The spirondolactone is kidney sparing. They often give some lasix and some spirondolactone to give the patient both plenty of diurentic but not too much lasix which can be hard on old kidneys. Keep an eye on his potassium also...he can get bad cramps if that one goes down.

Oh, my. What are you going to do?

Hugs,

ML

Cat,
I think there may be some questions you want to resolve as you coordinate through this. One is not being mentioned much. Regarding his girlfriend, Cat. What is the girlfriend's role up to now, and going forward in his life? Is she involved right now? Does she discuss pre and post transplant issues. Is she willing to be his caregiver? He has lived with her for a long time, and it sounds like this is still the case and plan going forward. Even if she works, as a lot of caregivers must.... would she be able to arrange some home health care with friends, family taking turns, or an agency to help during her work hours? I guess what I don't know is ....does she want to be his caregiver when he is sick...or just live with him when he is well? This is tough for you. Big Hugs

I talked to his Kidney dr today. Kidneys are getting better still. BUN is 9, creatinine 1.1, sodium 134 (so I'm not sure if that sodium figure of 166 the nurse gave me yesterday was accurate or not, seems like a big change). Potassium is 4.1. Aziffle, the dr did say he does have severe acsites which is why they keep increasing the diurect amount yet still do the paracentesis.

Thank you., Right now we're tying to find a nursing home for him to go to for more physical therapy to get strong enough to go home. So far no luck, places are saying no because of his age, he isn't old enough and the alcohoism.

Hi Cat,
Can your brother make his own decisions now?
I am not sure why there is a need to be in a facility when he is released. Can he walk to a toilet and feed himself, and answer a phone? I realize he has HE and is very weak, yet I am missing something I guess. Many with ESLD are in that condition and home. Because he is stable now, what is it that requires skilled care 24/7. What would a nursing home do for him that could not be done at his home? It does appear his numbers are in normal range the kidney doctor gave you. One problem I see has to do with you getting bad info from the medical people you speak to. It has to be terribly frustrating for you. Big Hugs

Ziff, Seriously....That had not crossed my mind :(

Cat, Is your brother on disability? If not, do you know how to assist him with that? Big Hugs

He's always been able to make his own decisions, a social worker at the first hospital urged him to pick a POA in case things got worse. Early on he was on a ventilator for a night due to internal bleeding. He likes me to help him with things since he gets confused easy. He can walk to the toilet, feed himself and use a phone. Maybe I'm being over concerned about his HE and that's why I worry about him being home alone when his girlfriend works. I applied for disability for him weeks ago and have not heard an answer yet. I truly hate this disease, so much going on, lack of info from drs etc.