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Posted 12/8/2010 3:26 AM (GMT 0)
eyes  Mama Lama Here

I don't intend to whine...but maybe just to vent a little.

Today was hard.  Two doctors appointments and an AA meeting for hubby.  A lot for him with very little time to rest in between.  He was tired, sure. But the HE is bad this week.  He doesn't see Hep Dr until Monday and wish it was tomorrow.

The dermo this morning gave us two kinds of lotion for the dry dry skin he has on his legs, back and behind his ears. The ENT told him that the fish bowl feeling he gets in his head is likely from the HE as his ears and sinuses and down his throat all look normal.  (Anyone know anything about a full feeling in ears and head with this ESLD thing?)

He keeps getting furious with his envornment:  his bathrobe knocked his juice to the floor, his phone is a piece of junk and can't make calls, the stupid William Sonoma catalog was too slippery and made him drop all the mail in the parking lot outside the post office, and I TOOK the applesauce out of his lunch bag. (it was in there hiding behind the napkin and chocolate ensure, of course!)

I asked him if he could tell the difference between a good day and a bad day?  He had no idea. I asked later him if he could tell that his speech was slurred and his gait crooked today?  No, he could not.  Today seemed like a normal day, he said, except I "started on him" as soon as I got up and that gave him a bad day.  What happened? I asked.  He couldn't remember. 

Nothing happened. He was fine while I was in the shower.  Then got off track when he spilled a glass of apple juice laced with lactulose in the kitchen.  The poor man.  61.  An athlete, a taker care of things person. A computer specialist who couldn't figure out how to get his jacket on today.  A skiier, a golfer, a lover of music, a man who still reads 3 books a week and knows every Jeopardy Question...reduced to how many poops he had and how many pills he took!

I miss my Mike.  I miss my life.  This is so terribly sad... 

ML

Posted 12/8/2010 3:32 AM (GMT 0)

ML, have you tried increasing the Lactulose?  You don't need a doctor's okay to do it.  If he seems like he did today, up the Lactulose...then speak to the doctor on Mon. about it if things don't improve.  Is he avoiding red meat?

I get that this is probably worse on you than him, since you're crystal clear about what he's doing.

Hugs,

Connie

Posted 12/8/2010 3:37 AM (GMT 0)
Yup Connie, I made him take a second FULL dose this evening. I was pretty sure it wouldn't do any harm and might do some good.

He didn't complain. He had 1/3 of a petit filet steak over the weekend and I think maybe the ammonia is worst when trying to digest that kind of protien. He has been really good about his diet.

He seems best when he has a very lite dinner...soup and crackers.

The ENT said to talk to the U Miami Doc about doing a brain scan. Some, very few, folks with HE actually also have Cerebral Edema that causes pressure to build up.

This week is way worse in the "altered mental state" category!

Thanks, ML
Posted 12/8/2010 3:54 AM (GMT 0)

No more steak for him!  No burgers unless they are turkey or veggie burgers.  NO BEEF!

Remember to speak the doctor about a brain scan.

Hugs,

Connie

Posted 12/8/2010 6:51 AM (GMT 0)
ML-I am sorry to hear that you are having some bad days. Try and care for yourself too...so you can keep on being there for Mike.

When my hubby was going through his withdrawals, his hands were shaking so much and he was so weak that he spilled everything. Our doctor suggested putting all his juices and waters into sports bottles. This made him feel better than me holding the cup with a straw or a sippy cup or wiping his chin after each sip...which is what we were doing. The sports bottles really worked for us...maybe just a little something you could try for Mike.

When did the time start for the 6 months? I recall that it is something less than the 71 days. Is there any way through the hospital records that the "clock" can start earlier? When we had our initial appointment to set the clock, the director of the program said he would start the clock with my hubby's first doctors appointment which was on day 2 of his sobriety. He didn't start going to the chemical dependency meetings until the following week.

Sending positive thoughts for better days.

Emma
Posted 12/8/2010 12:48 PM (GMT 0)
Emma -- Hubby had his last drink 9/27. He didn't start at AA until 11/4.

U Miami is using the 11/4 date. but I am going to talk with them again on Monday about using the 9/27 date.

He goes 5 - 6 times a week to AA and has an ethanol screening (blood test) once a week at PCP....all 0%. Woo Woo.

It took a while for hubby to wrap his head around what was happening. He quit drinking like he quit doing drugs in his 20's...cold turkey. By himself. And like quit smoking in his late 30's...cold turkey. By himself. If he wants to lose 10 lbs, two weeks later the wt is gone. I have never seen a guy more focused. Once he decides. That's it.

If it weren't for Rick's posts about coming back from the brink over the last week, I'd have given up any HOPE AT ALL. That guy has great timing!

ML

How is your hubby doing?

Was sorry to hear your son is having problems at school. I'm not a big fan of a 4 year funded beer blast. If one of my kids wasn't into school...they went to work instead! One got an MBA, one has a 2 year and is a Paramedic, and the 3rd has one semester under his belt and has worked heavy construction since high school.
Posted 12/8/2010 2:43 PM (GMT 0)
My husband also experiences the ears being stopped up.  Have had MRI on brain, seen ENT doctors and nothing shows to cause it.  He is having fluid build up around his right lung and I am not sure but what this may be related to stopped up ears.  When fluid is drained I notice he doesn't complain about the ears for a few days...then fluid builds up again. 
Posted 12/8/2010 4:26 PM (GMT 0)
Hello ML-

Hubby is doing very well. I am so very grateful for that. He is working, but not as many hours as before. But still over 40 hours. His weight is stable. He is eating well. He gets grouchy when he misses having a cocktail. But he is over 70 days sober. I am so proud of him. And thankful. His labs keep improving. Last set his alkaline phos went into the normal range. AST only 2 points over normal. Bilirubin and INR still need to come down. He can now wait 2 months to see doctor and have labs done. Next set will be mid January. He is taking a beta blocker for the portal hypertension. Seems to be tolerating that well.

His complaints are fatigue, feeling cold, achy bones and muscles, dry skin, decreased libido, and he has had a shallow cough since his first day of no alcohol. He has had chest x-ray and there is no pnemo. He did a pulmonary study but we don't have the results yet. He really wants the cough to go away because he says that it makes him feel like a sick person. His personality is coming back and he jokes and has fun and I can see the sparkle back in his eyes on some days.

I am so very grateful for his improvements.

Son-he has the rest of the school year to get himself together, if not the money train stops and he will need to pack his bags and come home...go to junior college or get a job. I hope he steps up to the plate and gets it done.

Emma
Posted 12/9/2010 3:58 AM (GMT 0)
GNET, re stopped up ears. I am finding a little information that suggest a few things...eustacian tubes may get clogged up. Folks with GERD (and many Hep C/Cirrhosis folks have that too) can irritate their eustacian tubes and cause swelling. Our ENT said he did not want to admister the usual treatment, steroid nasal spray, as it could exacerbate spontaneous nose bleeds...which would be VERY BAD. And anopther article said ascites and edema may have a counterpart of fluid build up in eustacian tubes. That seems to make sense to me...why not retain fluid there also?

Hubby had a bad day yesterday, see post above. And today he spent the whole day in bed. No AA meeting, no Doc apt at 1:45. He was just done in after yesterday. then in the night he had horrible leg cramps, tried to get up to use the toilet and couldn't get his legs underhim. I helped him back into bed and then it was a trick getting his legs back in. Basically he fell backwards before getting his butt all the way on the bed...and you may know you don't bend well at that location! Poor fellow. Now we will get a urinal to have at the bedside when he cant make it. And I borrowed a walker today. I am getting up with him when I hear him to be sure he gets to the toilet in the night. But maybe he could make it if he was leaning on something.

Maybe tomorrow will be better.

MamaLama
Posted 12/9/2010 4:29 AM (GMT 0)
ML-when my hubby was in withdrawals, he too couldn't get in and out of bed. I put a night light in the bathroom and one in our room. I got up with him each time he got up to use the toilet at night. Helped him in and out of bed. I agree, getting those legs in and his bottom scooted over enough to keep him in bed was a challenge. I also borrowed a walker and also got a urinal. I hope that tomorrow is better for you both.

Emma
Posted 12/9/2010 4:53 AM (GMT 0)
ML, My experiances with Doug and HE... I know how hard it can be for you as my Doug had many episodes, he spent almost a month straight in and out. I paid for service calls from cable cause he could call them about cable not working but couldnt work the remote which is all that was wrong. We had naked gardening, I would pretend to fix his laptop on many occasions( never had the heart to tell him it was him not the computer) , apologize for moving his stuff when he couldnt find it, bought Solo cups to save on washing dishes ( not because he was knocking over and breaking glasses). Never corrected him when he didnt know where he was, never reminded him of things he would forget just apologize for not telling him. I even dressed him before EMTs would arrive to take him to the hospital so he wouldnt have to go naked. Yes it is tough but I always felt he deserved to keep his dignity intact as much as possible. I as a healthy person with my wits about me would survive. We would laugh together about the crazy things he would do, as I only told him the funny things. Even when he was in a fog he always had that smile kind of like a little kid smiling cause Santa came or you just gave him a new gadget. I so loved that smile, the special smile for his angel!!
Sue
Posted 12/9/2010 5:24 AM (GMT 0)
ML, I hope tomorrow will be a much better day.  Don't give up!

Hugs,

Connie

Posted 12/9/2010 7:09 PM (GMT 0)
Notsotuff,  Glad to hear there are good days peppered into this mess.  I'll look forward to some more.

Hubby was able to articulate that today was a difficult day, that he was frustrated that he can't do the things he once did.  Especially the driving.   He has not be able to or wanted to articulate how he feels...I was glad he did.

The spilling things, dropping things, losing things...how awful that must be!  He wanted to go to his AA meeting today but he really wan't up to it, but go he did...forgot his book to sign for today, but one of the fellows will sign for two days tomorrow.  He is with a really nice bunch, and they are nice to me also. I've gone to an open meeting and have chatted with the folks outside the meeting. I feel like a mascot or something.

Monday can't come soon enough for our UMiami appointment.  If we didn't have an appointment coming I'd take him to an ER near here today. The HE is very bad. And I bet they would admit him for acute renal failure again today given his current symptoms. 

Should out to all my on-line friends...try to have a great day.

ML

Posted 12/9/2010 10:20 PM (GMT 0)

ML, great that he was able to articulate his feelings and also that he made a meeting.  The folks in AA are great...very supportive.  And you will hear a lot of laughter.  It's not all gloom and doom.  We learn to laugh at ourselves and things we've been through or are going through.

Hugs,

Connie

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