Caregivers Sharing Thread - renewed #3

Thanks Emma, very much appreciated. #2 is locked.

What do you do when you feel fearful and overwhelmed? I have been reading too much about liver disease and complications on the internet this morning...and now I feel sick to my stomach.

Thanks Kathy. My husband is doing really well and when I read about how much others struggle who post here about their loved ones, I feel bad about complaining. But we are all focused on our own loved ones...

I try to only talk about health issues once a week with my husband. We take blood pressure on Mondays, so that is the "patient" day. He has put on some weight so I have been fretting about ascites. He has never had that before. And I doubt that's what it is now either...too many ice cream sundaes after 10:30pm. His legs are normal. His belly looks like he did before he was ever sick. (He is on the round side.) I guess I just got use to him a little thinner...he dropped 20 pounds in the first few months of his illness.

And it's me...a worry wart...a nervous nellie...

Thanks for letting me babble.

Emma

Post Edited (healthynow) : 6/21/2011 12:13:29 PM (GMT-6)

hi guys, just a vent and a worry of my own,,, sister in law called me this evening, hubby has had some bleeding with and in his bowl movements and has also been sick today, (containing blood). they have called the emergency doc who said to "see how things go and if there is more by the morning go to the e.r". the blood from below was not dark but bright fresh blood, the blood in the vomit was black, does this make a difference? sounds like varices to me,, what do you think?,,,,,,,,,,,,
xxnatasha.xx

thanks emma, i shall make another call and tell them again that i think he should be in the hospital.
whats with that doctor then telling them to wait??? this is just getting ridiculous now. thanks again emma.xxnatashaxx

I did the same thing today, read too much on the Internet and feel overwhelmed. I hope everyone here can catch their breath, and feel better...

I run from feeling optimistic to incredibly sad, and selfish for wondering what will happen to me.

I'm having a bad day, he's irritable and mean, very uncooperative. I hate the HE, hate it - someone please tell me this won't be permanent.

The rectal bleeding, if it's bright red could be hemorrhoids. I had that when taking large doses of lactulose. Too much toilet time. Though, if it's heavy, you need to head for the ER.

To all who read and worry, I found that being careful about my health and listening to my doctors was the way to go. Even experts disagree and I don't believe much of what I read online. I trust my docs and they've never let me down. There were a number of times when I wondered if their advice was right and 9 out of 10 times they were. Medicine is a science, but it's often inexact, especially when it comes to liver disease. If you let worry get you down, it certainly won't help your health. For 8 years, I never received a call with good news. I expected to hear the worst and after a while it didn't phase me a bit. In July 2009 I got my first "good" call and it didn't phase me either. By then, nothing could get to me. The friends I called on my way to the transplant clinic still kid me about how calm I was, while on my way to get a new liver. By that time, any and everything seemed perfectly normal. I believe that attitude helped me immensely.

Does the vomitus have a coffee grounds appearance?  If not, it's not coffee ground emesis.  The dark blood could be partially digested blood.  He may have bleeding varices.  The red blood in his stools is also indicative of an acute GI bleed.  I wouldn't fool around with this, but get him to the ER.  In a healthy person, this could be from hemorrhoids or a fissure, but with liver disease it's more serious.

Emma, try fruit for snacks:  All kinds of melons, berries, apples, citrus.  Most of my food budget is spent on fruit.  Also raw veggies with low-fat ranch dressing.  Try string cheese or cheese wedges like Laughing Cow, but watch the sodium content.

Hugs,

Connie

Hi Emma, when I would get into the worry mode.....I'd take a walk, do some gardening, watch a TV program that I loved......But the best thing to take my mind off of it was to have my granddaughters over......They were good for my husband too......in moderation of course.

Take care.......thoughts and prayers........

I am south of SF...92.

Better than 104! But still waaaaayyyy hotter than I like! I feel like a sweaty mess!

Thanks, DDMom and David -

I noticed the hand-flapping today, I asked him to hold his hand up with his fingers spread and he just started flapping it. It's the first time I've really seen it, although I know it's happened before. He's agitated and confused, it's scary - he's always been my support and source of comfort so this is tough. I'm pretty isolated now other than the phone and Internet.

He's on 30ML Lactulose 4X a day, and 400MG of Xifaxan 2X a day. The Xifaxan is $1100 a month, and we are uninsured and going through the Medicaid process - I am extremely worried about next month's prescriptions or interim dosage adjustments, and how I will cover them. He's been very ill for over 3 months, I'm tapped out.

I don't think he would take more Lactulose unless the doctor specifically told him to, he's still in some denial about the HE and combative with me at times about meds, glucose checks, temp and weight checks.

I'm going to try and take your advice, David. It's very hard right now. I'm still adjusting to his diagnosis, the abrupt shift in our life, the grief and terror I feel about his condition, the fear of our future, my future, and the sadness I have seeing him so confused and scared. It breaks my heart, and even though I never cry around him and stay positive; in private I do. He's my best friend and my husband, I never thought anything like this could happen - he is such a strong, sweet, amazing man. I just want him back.

My mother in law takes neomycin, I think that may be the other antibiotic you are talking about David. It along with 60 mg Lactulose 4 times a day has kept her HE down