Caregivers Sharing Thread - renewed #3

Carol,
I feel your freedom!! I am soo happy for you and Mike!! I know it's all worth it, no matter how tuff it gets.
We are both soo . .ready!! I know we still have a long way to go. The eval. is still over 2 weeks away. Hopefully he will be listed in 2 regions.

My husband is still doing very well for as sick as he is!! He still is up and moving around doing things 3-4 hours a day on good days. When he over does it, he is down for 2 -3 days. Most of his problem is the Ascitis and Adema (spelling not good), and he's in the bathroom alot from the Lactulose. The cramping is minimal when he is off the lasiks, and since he's been taking meds for the ammonia levels, the itching is minimal, more from his skin streching it seems. I talked to the TP Coordinator yesterday, and they are going to address his water retention problem more agressively than they have down here in FL. Our Gastro Dr. here put in a good word for us with the Tp Coordinator. She seems very nice, not rushed or too busy to talk to me. She went over some questions I had about the the schedule and testing . . very nice person and thorough!! I like that!!.

I will start a thread about his eval when the time comes!! I have started a journal and have been diligent about keeping track of every thing he eats, drinks etc.

Debbie

Bumping for Emma, in her absence.

Debbie, 1500 cc = 50.721034053 oz.  I found a converter:

http://www.unitconversion.org/volume/cubic-centimeters-to-fluid-ounces-us-conversion.html

Google is my best friend for things like this and should be yours, too.

Are his legs swollen and hurting?  I believe I gave you the massage technique that helps to relieve some of that temporarily.  Once you've gradually pushed the fluid from the top of his feet up to his knees, put TED hose on him.  You can buy them OTC now.  Get the ones that go up to the knee.  They are compression hose and will help in eliminating fluid in his feet and calves.  Be sure to gather them up and get over the foot first, like you would a child's sock, then roll them up the calves.  They are difficult to get on and this is the best method.  Leave on no more than 6-8 hours, then give his legs a breather and repeat.  Check to make sure they are not cutting into his skin at the top.

As for the C. Anthony verdict:        

Hugs,

Connie

Try the same massaging technique for the cramps.  The TED hose WOULD help him.  His cramping might also be from a lack of potassium.  How much Aldactone is he taking?  He might need a potassium supplement or even quinine for the cramping.

Hugs,

Connie

Natasha, thanks for the update! GREAT NEWS that he still isn't drinking. It does sound like his liver has decompensated and a transplant will be the only option. Hopefully, he will remain sober and get evaluated for transplant. I do, however, think at some point they will want him to attend some form of alcohol counseling or AA. With his continued physical symptoms he may not make it to evaluation and transplant. But he can only do himself good by staying off the booze. Happy to hear that his kids are able to see him more often now.

Hugs,
Connie

Hi Debbie ,I'm back ,found my glasses.
I Get cramps regularly ,you get used to them . Your hubby will find that's the case with him to.If I remember correctly he's a war veteran ,he's used to hardships . It's just a fact of life.
Mick

Debbie, I dont know if this will help, but my Mother in law takes the potassium and we bought an otc magnesium supplement and it seems to help somewhat. For a while we were able to just give her these on the days she would take the lasix, but now we have to several times a week. When she asks me why, I just tell her it is part of the disease, because thats all I can assume it is.

Natalie

Thanks all for the responses. Yes, he takes a Pottasium supplement and Magnesium as well . . the Potasium is voluntary, and the Magnesium is prescribed. We have been on low to no sodium for over a year. Now the fluid intake is 50 oz. or less. He lost 3 lbs when he started the furosemide again, and that is it . . he still looks like he's going to give birth at any minute!!..
I talked to the TP Coordinator and she says he may have closed cell Acities, that when we are up for eval they will be able to tell from the ultra sound and ct scan, and will recommend treatment accordingly . . they will be working with his doctor here, monitoring his status. So, it's only another 9 days!! We have been dealing with it for over a year, 9 days is nothing!!

Thanks again for all of your ideas and input!!

Debbie

Just a quick note: Mike had horrible cramps in hands, feet, legs, all over for a long time. So bad he'd fall down.

Since the morning of his transplant he has not had ONE!

I think it is more complicated that just needing more potassium. I think the sodium is in the mix and the IN GENERAL failing liver that messes up your whole system. Mike took many stabs at controlling the cramps, but nothing worked...not potassium, not magnesium, not calcium, not soap bars under the sheet, riding the bike before bedtime, etc etc.

Though, to be honest, on the full regime, lactulose, spirolactone, lasix, and xifaxan, he was a lot better.

He thought of all the potions he tried, Hawthorn Berries were the best. Though who knows.

Carol

When he went in the hospital from dizziness, chest pains, and knowing something was wrong, his bloodwork showed his Magnesium was low, real low. They gave him an IV with it, and it helped alot. Then they prescribed it before he left the hospital. I've asked about the Potasium, and was told he is OK there. I'm going to go over all of it with the TP team in PA. I have a note book set up for the trip, a list of questions already started, a diary of what he's been eating, drinking, weight, BM's and urination . . I am really organized! They also told me that they are going to be giving us information to read every night about what to expect, and whats going to happen etc..

I'll keep ya'all informed,
thanks for all the info

Debbie

starting a new thread...this one is 4 pages. moderators please lock.
thanks.