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Posted 6/29/2008 9:26 PM (GMT 0)

Connie

How much diuretics did you take to get rid of it.  Jerry is on 1mg bumetanide and 200 MG Aldactone.  He was on 2 mg bumetanide and 200 Aldactone but the last episode of dehydration the Dr. has lowered again.  Prior to that he was on 3 mg Bum and 300 MG Aldactone.  He was on that dosage for several months.  He just couldn't handle that after a while.  I think they are a little better today.  I've made him keep his socks on all day today.  I think they really bother him but he's such a trooper.  Never complains.  If it was me I would be unbearable to live with.  He just goes with the flow.  Has grumpy moments but they never last long.

JoAnn

Posted 7/1/2008 4:40 AM (GMT 0)
Hi JoAnn,
Make Jerry keep his socks on all day, everyday and prop them up as much as possable. That's what worked for Mom. I took her to the eye Dr. today and that took 2 1/2 hours of sitting in a chair and then I noticed she wasn't keeping her feet up and tonight her legs were swelling again. She hates to keep her legs propped up, but it makes such a difference.

Carol
Posted 7/1/2008 10:48 PM (GMT 0)

JoAnn, they had bumped me up to 60 mg of Lasix and 200 of Aldactone.  However, after 2 days, that proved to be too high of a dose for me.  I am only 5 ft. and weigh 118.  It made me feel nauseous and really wiped out.  So I lowered it to the previous dose, which is 40 of Lasix and 100 of Aldactone.  They left it at that dosage when I was seen today.  It's not doing much for the abdominal fluid, but my lower extemities are totally normal now.  I wore the TEDS compression hose when my feet, ankles, and calves were really swollen, but that's been over a year ago.  They are placing another drain on Thurs. to tackle the ascites again.   eyes

Hugs,

Connie

Posted 7/5/2008 6:21 PM (GMT 0)
Hi Everyone, My husband's encephalopathy has been worse the past few days. We barbequed at the park yesterday. I thought maybe it would be a good day. After everyone was done eating I caught my husband wheeling the hot charcoal grill to his truck. He was going to try to load it on his truck. Everyone watched but know one tried to help me stop him. I thought I had talked some sense into him only to look around and see that he had emptied the hot coals onto the parking lot. He began screaming at me to give him the keys so he could unlock the bed of the truck so he could load the grill. He had a very mean look in his eyes that I haven't seen in years. I refused and told him not until the hot coals were cleaned up. Family members helped clean it up after I pleaded with them. Some of them were saying bad things about him. Later that night his brother called to tell him that my kids were calling him names (which was not true). I don't understand why he would call him to tell him hurtful things. He begins by telling him he is worried about him and then trys to make him believe that his family (me and my kids) don't love him. I explained to my husband that even if things were said that things are said out of anger and frustration sometimes but the people don't mean what they say. He didn't understand. My daughter talked to him and I think she made him understand that we do love him and that they didn't say any of the hurtful things that were being told to him. I just don't understand what reasoning his brother had behind telling him this, especially when he was one of the people that actually did say things.

Today he woke up with "Brain Fog". He asked me again how long he has to take the lactulose. I told him when the toxins stop building up in his body. I didn't want to bring up the transplant thing again. It only makes him sad. He always says that there is no way they are going to give him a transplant, and I tell him that they will. He then asked me why the toxins build up in his body. I explained again that his liver isn't working well enough to remove them. I just feel so sad today. I hate having to explain the terrible things behind this disease. He never remembers then we go through it all over again. I hate that I have no one to rely on except my kids who don't deserve to go through this sadness. It seems like his family members only try to take advantage of him now that he isn't the person that he was. It is just so hard to understand all of this. Whats really bad is this is just the beginning.
Posted 7/5/2008 9:01 PM (GMT 0)

{{{{{{{{{{{{{{{{{Butterfly}}}}}}}}}}}}}}  I am soooo sorry it's been a difficult weekend thus far.  I know it must be very stressful for you, as well as sad.  I don't get his brother, either.  If you ever get the chance, tell the brother that he doesn't need to be saying things to your hubby to upset him.  I think a lot of times people are in denial of what is happening when loved ones are really ill.  It makes them feel vulnerable.

For myself, I've had no support person at all.  I should say didn't....until my best friend, a nurse, and I reunited, and now I can talk to her.  My sister understands, but she is in a different state.  She did come down 3 different times when I was dealing with the cancer, though.  My daughter is 45 and has never grown up herself.  She does not want to hear anything about how I'm feeling or what is going on.  But when I got the cancer diagnosis, the first thing she said was that she couldn't help me.  I told her I wasn't expecting her to...and if it got bad, I'd go to residential Hospice here.  Fortunately, I was cured of cancer (for now, anyway) and have never had encephalopathy. 

Hang in there, Butterfly, and know that you have all the support in the world here, and people who have really been where you are.

Big hugs,

Connie

Posted 7/5/2008 10:38 PM (GMT 0)
Thanks for your help Connie. I am really glad to hear that you have your best friend to talk to. It is so sad about your daughter. It's hard to understand why people do or say the things they do. I guess they all have their reasons.

Thanks for listening.
Posted 7/5/2008 11:07 PM (GMT 0)
Oh Butterfly,

People like your husband's brother really make me so mad that I could spit. (Right in their eye.) I totally understand what you are going through. I went through very similar stuff with my husband's family.

I am just now starting to getting over all the hurtful things that they said or did or didn't do while he was sick. I believe that Connie is right about the denial part. But I think it has more to do with not wanting to help. If nothings wrong they don't have to worry about offering any assistance. nono Sorry.... I guess I still have some work to do on forgiveness.

Butterfly I know that it is hard and that telling you to take a little time for you is difficult at best. You are probably thinking.........yeah right when????? You'd be surprised at what a few minutes a day will do for you. Grab them when ever you can. While he's asleep or watching TV. Do something nice for you for a change. It doesn't have to be big or expensive. Walking,reading, painting your nails.....what ever makes you feel good.

Come and vent anytime Butterfly. I was just telling Shelly that you when ever you post you are always trying to help others..........let us help you for a change. We are here for you too.

Lot's of thoughts and prayers........
Posted 7/6/2008 5:23 AM (GMT 0)
Hi Butterfly,

I can't express how it hurts to read your post. I am so sorry that you have to deal with this with your husband, and then to have to hear that BS from unconscious family members. I know that you're strong but please unload here when you've had enough, or preferably before you've had enough.

It hurts me on another level because I am still lucid enough to know that in the future I will be like your husband, hurting those who love me, being mean while in that stupid brain-fog. In hearing the aftermath stories like Pink Grandma's, it is clear that it is possible to be unimaginably hurtful. The transplants can never come soon enough, and I hope when your husband's comes, he has the sense to be both thankful and apologetic.

We're all in this mess together. Whether you think of us as all in a boat together, or as I prefer, in the words of the '70's 'Firesign Theater' comedy group, on a bus together. They had a skit, "We're all Bozos on this Bus!", referring to the fact that in our common roles (in this case as caregivers or patients) we all have to wear the same red noses and whiteface makeup. (yes, bad analogy) My point is that we face that same challenges and want to support you and keep your spirits up. I can only vouch for myself on that Bozos claim, knowing that a bulbous red nose and whiteface makeup are improvements for me.

I hope that you know me well enough to understand that it critical for me to have some level of humor when addressing this disease. Otherwise for me, the disease wins by beating me down. And I don't like losing.

My thoughts and best wishes are with you.

Be well, and keep the faith, John
Posted 7/6/2008 2:18 PM (GMT 0)
Pink Grandma and John, Thanks so much for being here. I am so thankful that I have people like you and everyone else here to talk to when I feel the need to let it out. It is good to have friends that understand what you are going through.

John, I totally agree with you. Humor can be very healing at times.

Thanks for being here and for your prayers. You are all still in mine.
Posted 7/6/2008 4:01 PM (GMT 0)
Victory, Thanks so much for that. It does make sense when you put it that way. You are going through so much right now and still take time out for others. That makes you a very special person. My problems are minimal compared to yours. Thanks for your support. I'll be praying that you are cured and able to complete your degree.

Take Care!
Posted 7/6/2008 6:43 PM (GMT 0)
  

   smurf   Hi Butterfly,

 

I hope you all are having a better day today. 

Your husband has a reason for being the way he is. His brother is just mean and stupid.

That was a lot of emotional fallout to deal with in one day. That can be very exhausting.

 

Have you had anytime for yourself lately?  I haven't been able to work much in my flower beds this year, so I've been doing that yesterday and today. I have more weeds than flowers.  tongue  

 

Peace and Joy,

 

Carol

 

Posted 7/6/2008 8:15 PM (GMT 0)
Hi Carol, I feel much better today. I love gardening but haven't had the time lately. I plan on getting out there really soon. My grandson will be here today. He always makes me feel happy. I hope everything is going well with you.
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