Level of Function

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Jim's wife
Regular Member

Date Joined Dec 2006
Total Posts : 31
   Posted 12/19/2006 9:28 AM (GMT -7)   
Good morning all,
Jim, who has ESLD, has a low level of function, both physically and mentally.
The general rountine is for him to sit on the couch, eat the multiple small meals I bring to him, pretend to read the sports page, complain that he is lonely most of the day while I try to manage the household, and be in bed for 12 or more hours a night.
His blood pressure is so low (like around 90/60) so that when he transfers from sitting to standing he often has a fainting spell, sometimes turning into a "mini-seizure" where he shakes, can't release the walker, and his eyes roll back in his head.
Mentally, he can't recall the year, doesn't know which cat is which, can't recall the home health schedule for the day. Most troublesome is his lack of recall concerning sports. He is a huge sports fan, but he can't remember that the college football/basketball games are on Saturday and pro football is on Sunday. Yesterday, when I asked him who was played Monday night football, he said "two teams I never heard of." It was Cincinnati and Indianapolis; teams he does (or did) know.
I have heard some talk of events of encepalopathy. That seems to me to be an extreme situation, and I did see that early on when, for example, he denied we were married. This current behavior seems to be something different, a low grade memory loss (mentally) combined with low blood pressure brought on by electrolyte imbalance (physical). He also has some visual problems/hallucinations; he asked me to turn on the TV when it already was on. His blood sodium is very low (127), his dietary sodium is restricted to 2g daily, his fluid intake is restricted to 1200cc a day, he takes Lasix and Aldactone once a day. Last night, he got up every hour or half hour to urinate.
The only thing that is seeming to help with his blood pressure is exercise. He fights exercise because he says he doesn't feel good. When he does exercise, his BP does go up and he feels better.
I know that memory problems also can be brought on by infection, such as a UTI. Other than the small frequent urination, he doesn't have symptoms of a UTI. He also is on a prophylatic antibiotic because of his history of spontaneous bacterial peritonis, morphing into sepsis. He did have a PICC line inserted on Friday so that the blood draws would not be as painful.
His neuro-psychologist told us that as his body gets stronger, his mind will too. His body is not getting stronger, so neither is his mind.
I guess I'm rambling here, hoping that someone with experience will see something that we might be able to change to improve the situation. I read how some with this DX do chores/errands around the house or in town. I would LOVE to get Jim to that level of independence. Is that a severity of ESLD thing, a medication thing, a teaching/learning thing that you worked hard on, or just a will to function that the person with ESLD has in his/her personality? Right now, Jim seems to have little will to function.

Venita and Jim
Wlmington DE

Regular Member

Date Joined Jan 2006
Total Posts : 402
   Posted 12/19/2006 10:24 AM (GMT -7)   

Hi Venita, Your story sounds all too familiar! Mark was like that last December and through February. He had a lot of falls, his recall was awful! I do think it was his nutritional status! My husband has been put on Boost or ensure, which ever one I choose to buy, they would prefer nepro but that would cost around $300 a month. Way too high for us! You will really need to talk with the doctor about what he wants Jim to have. Mark is on the sodium restricted diet also, his sodium is on the low side too, it helps keep the ascites down. What you are describing is encephalopathy, the degree of it does vary. Mark does have extreme episodes of encephalopathy, it is awful when he does. I can always tell when it is "kicking in", his memory gets poorer, his hands start shaking. I do limit his driving, I didn't allow him to drive at all for months. Now I will let him but only very short distances, I watch him like a hawk!!!! Any signs and no keys to the car! Getting the medications right has truly been hard! But I do know once his nutritional status was better, he got alot better. He still has bouts of the encephalopathy, it recently has been related to infections!!! He has had a prostate infection, where he took antibiotics for 6 weeks, Just a week ago he had a sinus infection that he has been taking antibiotics for, he had a extreme bout of the encephalopathy with it, lasted for 2 days! They also have him on prophylactic antibiotics, for the ascites. He also takes xifaxan, which is also an antibiotic for travelers diarrhea, to help with the encephalopathy. I don't think there is anything simple about this disease and getting the right combination diet, medications and activity, is not easy! I do hope you and Jim can find some medium with this, we have more downs that ups with this! ((((HUGS)))) sent your way!!!


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