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Posted 3/15/2011 5:59 PM (GMT 0)
Since my mother in law got released last Friday she has been doing fairly well. They have her on so much lactulose at times she cant stay out of the bathroom. Today though her hands and feet are starting to draw up on her. Is that normal with ESLD? Bless her heart, she cant use her hands when they start and then she cant walk when its in her feet.
She has been able to void really well, they arent too sure what happened as to why she couldn't. I guess its all part of the process.
I hope everyone is having a good day. I'm waiting for the pretty weather to come tomorrow, so while she is well, I can get outside and start getting my flower beds prepared for planting. She loves flowers, so maybe it is something she can enjoy too!

Natalie
Posted 3/15/2011 6:54 PM (GMT 0)

Natty, thanks for the update!  Glad to hear she's a little better.

What do you mean by "drawing up?  Muscle spasms or cramps or....?

Hugs,

Connie

Posted 3/15/2011 8:43 PM (GMT 0)
Well she says it's like a charlie horse, but her hands just draw in and under. Like her fingers curl under each other and her hand looks like the sides could almost touch each other. Her feet kind of curl under as do her toes. I know I have had muscles spasms where I broke my foot, but it never did this. It's almost like some sort of excorsist thing, lol. I know it is a weird way of putting it, but thats kind of what it reminds me of when it happens.
I gave her a potassium pill today and had her drink some pedialyte. I also put a heating pad on her hands and feet for a few minutes. It seemed to help, but I know the last time she had these she went into a spell shortly after. It could be a coincidence that it happened like that, just not sure
Posted 3/15/2011 9:14 PM (GMT 0)

Natty, you did the right thing.  Seems like it could be from low potassium.  I get spasms in my feet sometimes when I'm lying down and have to get up and walk a bit to work them out.  Is she taking potassium on a daily basis?  If so, how many milligrams?  If she's taking Lasix without Aldactone, it draws potassium out of her system when she urinates.  Aldactone is a potassium sparing drug that balances out what she's losing with the Lasix.  She may need a higher dosage of Aldactone or potassium pills.

Let's hope she's not going into a "spell."

Hugs,

Connie

Posted 3/16/2011 2:53 AM (GMT 0)
First a hot shower...heat pads...as timeless said massage... I massaged Mike's body for 6 hours sometimes... of course that's not practical here.. but massage a few times a day... Sandi
Posted 3/16/2011 4:15 AM (GMT 0)
Connie, she takes the generic version of it and it 20meq tabs on the potassium. Not sure about mg. I do massage her hands and feet for her and use a heating pad, but without Mark here it is hard to get her in the tub. She is very stiff and falls easily, so I dont want to try to do it alone.
She is starting to swell now, so we are going to have to give her her Lasix tomorrow morning. It is as needed, so she doesnt have to take it every day. She had an iv in the hospital and just about any time she gets one, it messes with her CHF and she swells. If its not one thing it is another, bless her heart. I hate seeing her go through this.
Posted 3/16/2011 6:51 AM (GMT 0)

Natty, 20 mEq of potassium?  What kind of potassium is it?  Potassium Chloride, Potassium Citrate, or something else.  I need to know in order to do a conversion to mg.  Just make sure she gets the potassium along with the Lasix.

You are her special angel right now, and I'm sure she knows it.

Hugs,

Connie

Posted 3/16/2011 1:56 PM (GMT 0)
Thanks Connie, I really needed that. Sometimes, I get really aggravated and it doesnt seem like Im making a big difference. I do try though. It is Potassium Chloride. Sorry didnt add that on.
Im really not sure why she was cramping with as much potassium as she had. I found where she had gotten into the V8 and drank 5 or 6 of them yesterday. So along with all the other fluids she drank yesterday, its no wonder she is swelling. We had to remind her, just because it says low sodium doesnt mean it doesnt have any.
We have noticed many child like characteristics coming out in her lately. I guess its just part of getting older. Its like having a house full of kids, with the actual kids, her and Mark. I think I have gotten about 100 new grey hairs in the last week! lol, oh well there is dye for it!

Natalie
Posted 3/16/2011 6:23 PM (GMT 0)

Well, the volume of V8 she drank would certainly cause her to swell.  Perhaps you need to get a cabinet lock for thinks she shouldn't eat or drink.  I understand that the V8 was probably in the fridge, though.

Thanks for telling me what kind of potassium she takes.  I have to run out for a bit and am trying to get through the new posts, but I will get back on later and try to do the mEq conversion.

Hugs,

Connie

Posted 3/16/2011 6:58 PM (GMT 0)
Thanks Connie, I really appreciate all your help! :)
Posted 3/16/2011 7:32 PM (GMT 0)
Take a look at the amount of sodium in low sodium V8. The level is still above what she should be ingesting. In the future look carefully at the label of anything you plan to buy at the grocery store. The sodium levels are much more than anyone with liver problems should be eating or drinking. A thousand mgs per day is low, but not if you're having bloating issues. The best way to stay away from sodium is to not buy food that's prepared, canned, or comes from a box.There are some foods that are naturally high in sodium. Tomato's are one of them.
Posted 3/16/2011 7:45 PM (GMT 0)
David, we actually bought those before she moved in here permanently, so I forgot I had them. I dont drink too many of them. Right now, they are put up, along with anything else that we can think of. It is sad to say, but she is like a kid in a candy store anymore when it comes to things she shouldn't have. It is hard on us and the kids though, so I have begun to stash things here and there. The sodium level in each can is 200 mg but when you drink so many, it adds up quick. I dont add salt to anything that we eat, and we have found out if you use canned veggies, draining them and rinsing them, helps to remove some of the sodium.
I would cook everything fresh, if only I had the time and money, lol. Thats why I cant wait til summer, I can grow my own.
Thanks for the advise, I can use any I can get. I am still getting used to all the changes I have to make and just ESLD period. Who ever labeled it a roller coaster ride was absolutely right! WE go to the doctor tomorrow and have started on a list of questions, and I just may have him explain to her about the V8 and things like that. That way, it came from the doctor also and she cant get upset if we tell her no.

Natalie
Posted 3/16/2011 9:07 PM (GMT 0)
Natalie, I found that 1 mEq of pot. chloride = 74.5 mg. I'm not that great at math, but I think that is 1490 mg. I still have my bottle of potassium chloride tabs and they are 20 mEq, taken once a day. So it seems that's the standard dosage. What you have to focus on is her taking them, and especially cutting way back on salt. You seem to be doing the right things and I'm glad to hear you have taken the V8 and similar salty foods and hidden them from her.

It would be good for the doctor to stress the importance of very low salt diet to her. However, would she remember? How is her memory these days?

Hugs,
Connie
Posted 3/17/2011 4:10 AM (GMT 0)
I dont understand how someone can go to barely eating at all, to non stop eating. I swear, that is all she does anymore. Im glad to see her eating, but if she likes it, she keeps going. I am afraid she is going to get sick, lol. Oh well, I guess eat while she feels like it.

Connie, her memory seems to be ok, when she is doing ok. She gets dates and stuff mixed up, but for the most part it is there. It is just whether or not she choses to remember. I can't say much, I do that too, I think we all do to a certain extent.

I will update you after the doctor tomorrow, hopefully it is good news, but you never know. Just enjoying the good times while we have them.

Nat
Posted 3/18/2011 3:06 AM (GMT 0)
Took mom to the doctor today. So far everything looks ok. He doesnt want to take her off the 4 doses of lactulose a day and says when she starts getting confused, up her dose to 6 a day. It is just a wait and see thing. He did tell us that her bilirubin will mot definitely be the indicator of her liver function from here on out. He said right now it isnt dangerous but it is high, s we will keep a check on it. He wants to see her back in 2 months, but said he is more than sure he will see her before then. He seemed very pleased to see her alert and able to walk on her own and not need a wheel chair. SO all is good. He told her no more than 2 liters of fluid a day. Hopefully she will listen to that.
I do have a question though. Why does she not need to eat beef? No one has told us that, but I have read it on here and other sites.
Thanks!

Natalie
Posted 3/18/2011 3:41 AM (GMT 0)
Hi Natty, Beef is too hard for a decompensated liver to process. Everytime my husband would eat any beef his last year and a half his ammonia levels would rise and before I knew it he'd get goofy as a jaybird. The doctors never told us about it........found out the hard way. Thoughts and prayers.......
Posted 3/27/2011 4:58 PM (GMT 0)
Well, no more big spells of HE, although, we have noticed she goes in and out of confusion many times throughout the day now. We will think a spell is starting, and she sleeps a couple of hours and she is back to herself. Then she starts fading away again, she will do this many times through the day. She is sleeping a whole lot now, more than I have ever seen her do. I guess her body is just wearing out.
Is it normal, for her to go in and out of confusion like she does? It is new, been going on for a few days, but we have noticed since she was put in the hospital, she sleeps all the time. She never seems to have enough sleep.
Still just trying to learn, although it seems I will never know it all.
Natalie
Posted 3/27/2011 6:04 PM (GMT 0)

Natty, those periods of confusion may come closer together or last longer.  Same with sleep.  No way to know when this will happen.  In the end, she may just go into a coma before she dies.

Hugs,

Connie

Posted 3/27/2011 8:09 PM (GMT 0)
That's what we are afraid of Connie, that one day she is going to go take a nap and not wake up, but I would much rather her go peacefully than in pain. I figured it's all just progression of the disease. She seems in higher spirits after her nap, which is always good. One day at a time on this roller coaster ride...

Natalie
Posted 3/28/2011 10:32 PM (GMT 0)
Well, we had to call an ambulance this morning. Mark woke up and found her on the toilet, vomit everywhere, in a spell. It is a bad one. Couldn't get any response, she couldn't help hold her weight up or anything. I had to call there was no way to move her without hurting her, or ourselves. She is in ICU and 12 hours later, not any better. Just has me wondering, is this it? Never really can tell though, it's all in Gods hands. Just wanted to fill you in before we head back up to be with her.

Natalie
Posted 3/29/2011 12:21 AM (GMT 0)
Worried. Praying this comes out how it is supposed to turn out. With peace and dignity. Either way. Hugs, Carol
Posted 3/29/2011 1:48 AM (GMT 0)
Natalie-praying for your MIL and your whole family.

Emma

Posted 3/29/2011 2:21 AM (GMT 0)

Natty, thanks for updating us.  This truly is in God's hands now.

Hugs,

Connie

Posted 3/29/2011 2:41 AM (GMT 0)
She still hasnt started to come out of it. She was screaming and crying in pain when we got there, her nose was bleeding, then to top it off, she pulled out her IV. They finally got her on morphine, and she is calm now, but still no where back to herself.
Will keep you posted
Natalie
Posted 3/29/2011 1:54 PM (GMT 0)
shakehead  Lot's of thoughts and prayers for you and your family........
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