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Posted 6/30/2009 4:42 AM (GMT 0)
Hello Bessie, this disease does get confusing.....As new symptoms arise they have to alter his meds, or food or liquid. The muscles do need the protein to not waste away.......Beef is the hardest for the liver to process...... skull So if the patient is experiencing muscle wasting then they usually say for the patients to eat chicken, fish,pork, beans,nuts, etc. With my husband whenever he ate beef.....he would have an encephalopathy episode with in hours....so we excluded it from his diet. But he ate plenty of the other proteins and he didn't experience much muscle wasting and we could better control his encephalopathy.

You and the doctors have a very tough balancing act to do with everything to keep him as healthy as possible.

They will need to adjust his diuretics according to his fluid retention.... ascites and edema and his kidney functions.......too much dehydration and the kidneys get damaged to less and the swelling starts...that's where the sodium restriction comes in........your body needs salt ......but not too much so that it helps to cause the ascites and edema. Not enough sodium and your electrolytes go out of whack. It's very hard to balance it all because what a person eats and drinks effects everything.

The doctor should be able to tell you what to do for his mouth sores. You may just have to get assertive with the doctor on him getting you the lab results and more information concerning your husband. Remember you guys are paying him.......that makes him your employee. Don't be afraid to ask and demand answers........Step on his toes if that's what it takes. Once he sees that you are involved in your husband's healthcare.......he will probably be more forthcoming with any information that you need.

One more piece of advice........take a tablet and write down everything he says......You must be stressed to the max. I know I was........I had to write down everything or by the time I got home I'd forget something that we were suppose to do or not do.

Hang in there.........we are here anytime. Thoughts and prayers.......
Posted 6/30/2009 10:45 PM (GMT 0)
Rick, you didn't have any alcohol for a week before you went to the hospital?  If that's all, then no...it wasn't completely out of your system.  I have heard in AA that it takes as many months as it took years of drinking to completely rid the body of the toxic effects of the alcohol.  If you drank for 15 yrs., then it will take 15 mos. to completely clear your body.  I don't know if there is any scientific evidence to back this up, but for myself I really wasn't very clear-headed for about a year after I stopped drinking, and had been drinking heavily for approximately 12 yrs., so that works out in my case.  smilewinkgrin
Posted 7/1/2009 2:28 AM (GMT 0)
I got the word today from both the GI and the GP doctors that there's little else they can do. The kidney numbers have climbed significantly, much worse than they were. They tried once again and were turned down for a transplant. They're giving him a 5% survival rate and are talking of releasing him to our home or a nursing home facility to pass away. They've indicated there may be other specialists that might have more to offer but only if they have had experience with this exact patient situation. The family and I have decided the quality of life he may achieve by prolonging the inevitable or seriously compromised organs isn't the way he would want to live, and the doctors concur. His mom was with him today when he received the news and there were some tears shed. By the time I made it to the hospital to see him this evening, he was incredibly lucid and specific about getting his affairs, will, funeral arrangements, etc. in order. So we went out on the internet to legalzoom.com to complete the will and hopefully by the time it arrives he will still be lucid enough to read it over and have it notarized by the hospital notary.

They're doing everything they can to keep him comfortable including a mouthwash for the apparent thresh he has contracted. His mouth sores were drastically improved with just today's treatment and he was able to eat a lot more with little or no discomfort. I don't know why they didn't give this to him sooner. Sometimes I think you need a round the clock representative for patients in hospitals...but the role of constantly pestering the nurses is exhausting and unwelcome as I'm sure they're used to it. And we as faithful peasants unlearned in the medical profession rely fully on their skills and expertise and try so hard not to insult them by second guessing them.

I'm trying to remember that I have so many things to be thankful for, his knowledge and understanding, and more importantly his acceptance, of his terminal state, the time to spend with him in his last days, the opportunity to discuss his wishes, and know that he knows I am there for him. So many lose loved ones instantly without this comfort. This is the best mercy God could have bestowed on us.
Posted 7/1/2009 3:37 AM (GMT 0)

bessylu, I'm glad that your husband and family are coming to terms with the terminal nature of his illness and making peace with it.  That is good that you are able to learn of his wishes and get things in order.  I'm also glad to hear that the mouth rinse has helped him.  I remember there being immediate relief, too.  I had gotten thrush from being on IV antibiotics for a prolonged period of time when I was in a body cast.  So it sounded familiar to me and I knew what they had prescribed for me.  Glad it worked for him.  You or he may complain to a nurse about it, but the nurse then has to remember to bring it to the attention of the attending physician who is the one who has to prescribe it.  Even OTC medications have to be prescribed in a hospital setting.

In today's world, there are more patients than there are nurses to care for them.  They are really overwhelmed, so it is important to be your own advocate or the advocate for your loved ones.  The nurses and doctors are really working for you and your loved one.  So they should not mind if you ask questions or offer suggestions.  In addition, many hospitals are now using 12-hour shifts for nurses.  They work two 12-hour shifts and then are off for 4 days.  When they return, the patient may not even be there, or things will have drastically changed and they have little time to come up to speed on the patient's current condition.  For these reasons, it really is necessary to advocate for the patient or yourself.  So don't be afraid to do this.

Hugs,

Connie

Posted 7/1/2009 3:45 AM (GMT 0)
I'm not afraid, when I'm there, and the nurses are definitely working 12 hour shifts. It's just when they notice it, I mention it, and they tell me they are going to mark his chart so the doctor will address it...I assume that that's what they will do. It took him not eating for them to finally take a look...I guess....I get so much confused information from him. I'm sure the doctors looked earlier at the sores, when they were in their early stages, and dismissed it as part of the problem.
Posted 7/3/2009 3:28 PM (GMT 0)
Talk about a roller coaster ride. My husband's creatine levels are back to normal today the doctors are enthusiastic and expect he'll be home in 2-3 days if all stays well. Of course the billirubin and other liver enzyme levels are still just as out of whack as they ever were, but the GI doctor says it will take a long time for these to stabilize again...as long as he never drinks again. It's a gorgeous day in Richmond.
Posted 7/3/2009 5:00 PM (GMT 0)

bessylu, I am glad you got some good news!  I know that your husband will be glad to get home, as he's beenin the hospital so long.  You know, strange things happen with this disease. so he could live longer than anyone had expected...or could take a sudden downturn and be gone.  It's in his Higher Power's hands now.

Hugs,

Connie

Posted 7/5/2009 2:50 PM (GMT 0)
Hi, Connie,

Just checking in. He's still not home, and other than the word of optimism a few days ago from the unknown liver specialist who has been showing up now daily, there's not talk of sending him home.

I don't know what all this means. I've never heard of anyone being kept for so long...it's been over a month now. His bilirubin is still in the low 30s, his albumin is still off and he has very low platelet counts. They seem excited that his creatinine is at a normal level and there's been a slight change in his protein.

In the first weeks of his stay, they kept stating that he could not go home until his bilirubin was down to 1.5 or 2.0. The liver specialist says it will take months for this to be normal. ....but with all the other posts I read here, everyone elses levels seems to be very low in comparison. Now they tell me bilirubin doesn't mean anything and I shouldn't pay attention to it. I thought I read somewhere that continued high bilirubin that does not improve significantly in the first week is a bad prognosis.

They've changed caring about any of the things they thought were important before after the renal failure scare of last week and they feel certain that the improving numbers are as a result of his liver repairing itself. I asked if the failure was possibly due to some of the medications he had been on, and they said that was also a possibility but aren't going to go through with a fine toothed comb and research all the drugs he's had...because it really doesn't matter to them now that the kidney numbers are improving. There's no confusion in him at all...although his short term memory is messed up, but he's very alert but complaining because he can't sleep even with sleeping aids, and of course very weak. So, no signs of encephalapathy and his amonia levels while a bit elevated are much better....they took him off lactulose days ago. They've cut way back on his IV fluids, but still have him on liquid restrictions...he says he is so thirsty all the time. They even let me put him in the shower for the first time yesterday.These should be good signs, right?

I guess what I'm trying to determine is...is this another port before the storm? I guess I keep waiting to hear bad news once again....and can't relax because if they're not sending him home they must be concerned that this is a possibility.

Post Edited (bessylu) : 7/5/2009 8:54:40 AM (GMT-6)

Posted 7/5/2009 6:11 PM (GMT 0)

"They seem excited that his creatinine is at a normal level and there's been a slight change in his protein."

Bessylu, this is optimistic because it means his kidneys aren't failing.  I suspect that they are keeping him in the hospital because they want to wait and see if his kidney function remains stable.  Also, this being a holiday weekend, his attending physician is probably not around.  You should know more this coming week.

There is really no way to know if he will get stronger and be able to go home, or if something may happen tomorrow that could put him in a critical state again.  That's why we say that liver disease is a real roller coaster.

Hang in there!

Hugs,

Connie

Posted 7/6/2009 4:10 AM (GMT 0)
Rick, what a miracle that you felt up to camping this long weekend!  Did you get some fishing in?  You continue to be an inspiration to all here.

Hugs,

Connie

Posted 7/11/2009 2:26 PM (GMT 0)
Hi, Connie and Rick

Fishing! How fun. the only fishing I've been doing lately is on yoville. Truly sad.

Connie you were right. When the attending physicians returned after the holiday the "going to live to be 100" doctor disappeared. Continued to receive optimistic reports, and from the lab work I've received the creatinine is in the normal range and many other levels are improving, albeit still out of range. They are talking of discharging him Monday or Tuesday. I was feeling very frustrated with what all it means as far as his future life expectancy or quality of life, since the focus has been on his kidneys being out of danger.

The Hematologist doctor (a very candid, blunt Russian doctor my husband dislikes and has complained to the other doctors for continually marching in and telling him he's going to die) came in last night when I was visiting and told him his platelets had improved. She then said they won't get much better (his platelets are at 47). I asked her what that means, and she stated simply, death. She went on to say that with low platelet counts and other conditions and viruses they can improve but with sever liver damage cirrhosis they cannot and will not. I challenged her on the cirrhosis diagnosis and she insists he has it. She also said he had encephalopathy. I challenged her on this too, because his ammonia levels are almost normal again, he's not taking any lactulose or diuretics. She smiled (in what I think she must have thought was a pleasant patient way) and asked me what I saw when I looked at him. Then she started pointing out how yellow he was, his shaking hands, his itching, the scabs on his skin...and said THAT'S encephalopathy. I didn't argue with her, but I told her he was going to be released and she said that would be good for him, but to make sure he doesn't drive because it will make alcohol accessible to him and his mind is not in a safe state. Then she forced another sweet smile on her face and said, I hope you get better sir, I really do, and she departed.

We will be sending him to a nursing home where he will receive rehabilitation much more positive encouragement on recover. My insurance will only cover it for 100 days. I've done tons of research on platelet counts and can't really find anything. The bilirubin is at 26 the liver enzymes are terribly high, struggling with protein and albumin as well. I guess what I'm hearing is, he is in esld and since he is not a transplant candidate, it's only a matter of time, and how much time they cannot say...so they do not say....they just say your kidneys are doing much better, that's a sign of the liver functioning....which sends mixed messages.

And to answer your question, Rick, yes he is very weak. He's lost all muscle. He cannot walk without a walker, he says his eyesight is very blurred and he feels dizzy. He walked the hospital floor twice yesterday and did some exercises with the elastic band the PT brought him. He says he feels lazy and doesn't want to do anything, shaving for instance. Maybe some of that is depression...or maybe he truly feels awful. He just tells me everyday, I feel the same.

I learned he was on 40 mg of prednizone. Isn't this a lot? Some ask me if he has a moon face...no, he does not. Do either of you know anything about these platelet counts and can confirm what the hematologist is saying?
Posted 7/11/2009 6:46 PM (GMT 0)

I appreciate the truth and a straight-forward doctor.  What I DON'T appreciate is one who is totally pessimistic and holds out no hope at all for improvement.  Doctors are not GOD and cannot 100% predict what will happen.  They base their opinions on education and experience, but there are always exceptions--like me.  I really shouldn't be here, but I am here.  I think it's partly because I am so stubborn.  If someone tells me I can't do something--I'll go out of my way to prove them wrong.

Anyway, everything that your husband is experiencing does point to cirrhosis.  Platelets are important for clotting and low platelet counts mean he may bleed profusely at some point.  How are his clotting factors? 

Is he currently taking an antidepressant?  That might be something to suggest.  When a person feels bad for so long, he just gets sick and tired of being sick and tired.  The fatigue is largely from the disease, but depression can play a part.  You might want to take a look at all of his current medication, as there could be something that is contributing to his inertia, such as anti-anxiety meds or sleeping meds.   Since the liver isn't functioning normally, medications can build up in the system.  I am so anti-Prednisone that I don't even like to comment on it (had a bad experience myself), but 40 mg is not unheard of.  I know of people taking 60 mg or more a day, depending on the reason.

It's good that he will be transferred to a rehabilitation facility.  He will get more PT than he really wants, but it should help him get stronger.  He's going to have to make a real effort, whether or not he feels like it, if he wants to defeat the disease.  Even then, he may not win out--but at least he will know that he put up a fight.

Hugs,

Connie

Posted 7/11/2009 10:04 PM (GMT 0)
his clotting levels are within he normal range.

This morning he woke up with two kidney stones and is in a terrible amount of pain. they're giving him dilaudid, and of course can't let him drink much because he's still on fluid restrictions. i don't know what kind of stones they are but they suspect they will disolve themselves. So he's completely out of it, and I worry what effect this will have on his newly generated kidney function and the ever struggling liver, not to mention what bleeding might be occurring as a result. so much for breakfast and lunch today...at least he ate dinner.
Posted 7/12/2009 4:14 AM (GMT 0)

That's good news that his clotting factor is normal.  I am so sorry to hear about the kidney stones and hope that he passes those soon.  I hear it's very painful.  Are they giving him medication to help dissolve them?  This actually could have been the reason for his kidney dysfunction, rather than the liver.  I feel so sorry for him.  If it's not one thing, it's another.  With the dilaudid, though, he may have little or no recollection of this entire episode.

You hang in there and remember to get some rest and take some time for yourself!

Hugs,

Connie

Posted 7/16/2009 7:40 AM (GMT 0)
Sadly, my husband passed away last night.  He appeared to be getting better and they discharged him to a nursing/rehabilitation center.  For whatever reason he declined very rapidly.  He is at peace now and no longer suffering.

Posted 7/16/2009 12:28 PM (GMT 0)
So sorry for your loss. 
Posted 7/16/2009 9:09 PM (GMT 0)

Bessylu, I am so sorry.  It often happens that people rally and seemingly get better a little bit before dying.  I've seen it happen time and again.  As child4 said, he's at peace now and no longer suffering.

Please feel free to continue posting here whenever you like.  You experience can help others and we are always here for you, too.

Hugs,

Connie

Posted 7/16/2009 10:33 PM (GMT 0)
I'm so sorry to read of your loss bessylu. All my best to you and yours.
Posted 7/17/2009 3:05 AM (GMT 0)
Bessylu,I am so sorry to hear about the passing of your husband. Thank heavens he is no longer suffering from this horrible disease and is at peace. My heart goes out to you. Moonroe
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