Alcoholic Hepatitis

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bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/21/2009 9:34 AM (GMT -7)   
Searching through the pages, looking for answers, outcome, prognosis, hope, something?

my husband checked into the hospital june 1st, he was extremely jaundiced and vomiting blood and has a history of binge drinking. The doctors reported he had alcoholic poisoning and alcoholic hepatitis. After a week or so in the hospital, completely dillusional and out of touch, he woke up from his confusion and for the most part can carrying on a normal conversation while only getting confused some of the time. He's now been in the hospital for 3 weeks and there's no word on when he will be getting out. The doctors are waiting his bilirubin levels to drop. They've been as high as 36.7 and today they're resting at 29, with small peaks and dips. His amonia levels continue to be high. He was on two doses of lactulose for a week, and then one and today they're putting him back on two doses of lactulose. He has all the classic symptoms, still very yellow, dark urine, itching like mad, pain in his liver. They have also him on prednizone, thiamine, aldactone, darvacet and hydroxizine for the itching, but they continue to change up his pain meds, sometimes giving him adavan or dilodin. Today they're asking him to go without the pain meds if he can stand it to see if this will help his bilirubin levels drop.

I don't know what all this means, and the doctors are so vague, if you can get them to talk to you. From reading the other posts, it seems people live like this forever and it sounds dreadful. Three weeks in the hospital with at least another 3 they're guessing is driving me insane. His doctor told him this morning that he is not dying....does this mean he is not dying today? Does this mean he will be dying within a few years? They tell me he may have a little scarring but he does not have cirrhosis although no biopsy has been performed. Lots of CT and MRI scans, tell them that the liver is smooth. Does anyone have any information? Can he regain a somewhat normal life and function again? How long can the bilirubin levels remain this high and if they do, will it cause other damage?

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2009 1:19 PM (GMT -7)   

Hello, Bessylu, and welcome to the forum.  I am so sorry that your husband is ill with this disease.  It's a lot for families to take in and cope with.

First of all, it's primary for his recovery (and even for his very life) that he not drink again.  Have the doctors impressed this upon him, or is he still too "out of it?"  He will do further damage if he even has a beer.  As soon as he is physically able, he would benefit from AA meetings.  A very few alcoholics will be able to stop on their own, but most need a support system and a plan for living that is laid out by AA.

By the way, Ativan is an anti-anxiety/sedative med, not a pain med.  Dilaudid is a narcotic pain killer.  (Note correct spellings.)  It's true that his liver function will improve if he can eliminate these meds. 

A cirrhotic liver will be hard and pebbly.  However, a biopsy is usually the method used to determine cirrhosis.  In your husband's case, they may not want to do one right now because of his fragile state and the risk of bleeding.

According to Dr. Melissa Palmer in her book, Hepatitis & Liver Disease, if a person having an acute episode of alcoholic hepatitis stops drinking entirely, before cirrhosis has developed, that person then stands a chance of having the damage done to the liver completely reversed.  I would ask your husband's doctors if this is acute or chronic alcoholic hepatitis.  It makes a big difference in how it is treated and especially the prognosis.  Dr. Palmer states, "A persistently elevated bilirubin level and a prolonged prothrombin time...are the most reliable indicators of a poor prognosis."  Prothrombin time is the time that it takes the blood to clot.  Do you know if his PTT is high?

I hope this info helps a little.  It's really all that I'm able to impart to you at this time.  I think it is a good thing that they are not discharging him until he is better.

Hang in there!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/21/2009 5:10 PM (GMT -7)   
Thank you so much for your response.

The doctors have stressed to him to stop drinking for at least 2-3 years now. He's had pancreatitis before (pretty life threatening 2 years ago) and been in and out of the hospital for various things including high calcium, stomach bleeding, bloody stools, needing transfusions. he's been in 30 day treatment centers twice and tries AA and outpatient therapies, but they are generally short lived. I don't know anything about PTT levels. I have a chart with lots of initials and the numbers ran over those last few days. There is one for PTP and INR under the coagulation heading. Is this the right one? If so, his ptp was 15.9 and his iNr at 1.7 this morning. They have him on darvocet not instead of the dilaudid...but he received a dose of the ativan today too because the itching was driving him mad. He's a little confused, but not too out of it. A bit weak and unsteady on his feet. They also said something about his kidneys are beginning to retain fluid so they upped the amount of the diuretic or the lactulose ( i don't remember which ) it's all greek to me.

From all the other posts on here, it seems the other patients are discharged so quickly. The fact that he is not being discharged is, well, concerning in and of itself. They have not mentioned chronic or acute, nor did they when he had the pancreatitis. It seems difficult to box them in on an answer to this.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2009 8:30 PM (GMT -7)   

Bessylu, first of all I have to tell you that treatment programs and AA didn't work for your husband long-term because he stopped going or wasn't able to completely surrender.  Some have to lose everything including, unfortunately, their very lives.  If this hospitalization isn't a wakeup call for him, nothing will be.  He may find that he can't drink because it makes him violently ill.  That also sometimes happens.

The coagulation factor is usually noted as PT and PTT.  Assuming that the PTP is prothrombin time, it is elevated.  Normal is 11.6-14.7.  His INR is okay at 1-2.  What this means is that it takes longer than normal for his blood to clot.  As I said, this is probably why they don't want to do a biopsy.

You really have to be an advocate for him.  Learn as much as you can.  Pin the docs down and ask questions.  I have to tell you that some docs are not really going to care as much for an alcoholic with a long history and who is not really showing that he wants to quit drinking.  They are not supposed to be biased, but they are, since they basically feel that they are wasting their time.  I do hope that he will smarten up while it is still possible to reverse the damage.

The diuretics (usually Lasix and Aldactone) are given to reduce fluid.  Lactulose is for encephalopathy which is caused by high ammonia levels.  The elevated ammonia levels make him "out of it," irritable, etc.

Please look in the folder at the top of the page entitled Hepatitis Resources.  There is a lot of educational material in there.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/21/2009 9:42:43 PM (GMT-6)


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/22/2009 12:21 PM (GMT -7)   
Well, they're pulling him off of the aldactone today, because his kidneys are beginning to retain too much water.  I thought the aldactone was supposed to help this.  A week ago his once slender athletic legs were enormous, about a foot and a half in diameter, and the aldactone brought them back to normal....if you want to call muscleless and bony normal.  One dose of lactulose a day doesn't seem nearly enough to me either.  He's bleeding again when he uses the bathroom.  I'm confused over what pain and/or anxiety meds they're giving or not giving him now...because I'm getting the information from him, and he's a bit confused.  The nurses will fill me in tonight.  The itching increases each day, and they can no longer do anything about it except tell him he's going to have to deal with it.  He's very hoarse and he's losing so much weight.  He just lost another 5 pounds overnight...for a total of 25 pounds in 3 weeks.  The doctors seem to be fighting for him, but are helpless to do anything about the unrelenting high bilirubin.  I am assuming they are not telling me much because there's nothing good to tell.  They're very short with me, when I do talk to them and tell me not to focus so much on his numbers.  I have a very bad feeling about this...it's so hard to feel normal about anything.

Post Edited (bessylu) : 6/22/2009 1:36:22 PM (GMT-6)


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/22/2009 1:05 PM (GMT -7)   

Bessylu, I'm sorry your husband isn't doing well.  Aldactone is a mild diuretic.  However, its main function is to prevent loss of potassium from Lasix use.  I take them both and they have worked to keep fluid off of me and my potassium in a normal range--but it was a real balancing act for awhile there when I had liver cancer.  If your husband's urine output is not sufficient, he may require dialysis.  Has liver transplant been mentioned at all?

It's true that it's best not to focus on the lab values because they often don't reflect what is really going on.  In my case, they were never really bad, even with cancer.  You can often get more info from nurses.  Another problem is the HIPAA regulations strictly governing privacy.  Even as his wife, you may have difficulty getting information unless you have Power of Attorney.  This is something you probably should do, or get Medical Surrogacy to be able to make medical decisions for him if it comes down to that.

People have been known to be really critical and then turn around, so don't give up hope.  The fact that he is now off alcohol can only help him.  In reality, though, too much damage may have already been done.

Remember to take care of yourself.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/22/2009 7:53 PM (GMT -7)   
Connie,
I'm so sorry I've been so thick and didn't realize you too had been suffering from illness, and cancer...that's the worst disease ever. I have lost many to that hateful curse. It sounds as though you have beaten it? That is truly wonderful and I hope things continue to do well for you.

I spoke to the nurse, and he was indeed confused. They're continuing the Aldactone because of the Lasix, as you said. He believes they've discontinued one or two things, but doesn't remember what they were. I find him confused and not making a lot of sense...difficulty concentrating, more than anything, but the nurse says it's the medicine he's on and probably not so much of the liver disfunction. I believe his urine output is sufficient...he goes all the time...even with the diuretic it's still a dark tea color.

I'm not so much worried about HIPAA and power of attorneys, because when he was first admitted, the first week was touch and go and they asked me for my dnr directive.

It just seems to me that if he were getting better his bilirubin would come down, even a point or so a day, and I can find no information related to how long it can remain at 29 before other things begin shutting down or if he can stay at that level for months. I know no one has answers. I also know that the treatments the are giving him are giving him a chance to survive and they're waiting to see if the liver will recover. My husband believes they are calling his hepatitis acute. All his levels that I researched last night are either too high or too low....it just seems that somethings gotta give for better or worse.

Is anyone aware of anyone else that has been stuck in a limbo state for 3 weeks with no marked signs of improvement or worsening?

I'm also trying to learn if he has ascites...another difficult thing to wiggle out of them....is this a hard diagnosis to make from an mri?

They've done a couple brain scans as well. Last reading a week ago reported atrophe likened to that of a 70 year old.

Thanks so much for your support, kindness and guidance. I have such a difficult time with my moods when I visit him. It's tough to be buoyant and happy and take care of me as i believe it will give an impression that i don't care or I'm happy he's sick. What I feel is doom and gloom and that doesn't carry well into his room either. His other visitors can light heartedly visit while I'm beginning to feel like a stranger to both him and myself.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/22/2009 8:41 PM (GMT -7)   

Bessylu, thanks, I am doing well right now as far as the cancer.  I have been cancer free for 2 years, praise God and Mayo.  I have chronic active hep C and that is what caused the liver cancer.  I also have cirrhosis.  They removed the entire rt. lobe of my liver, so I'm living with just the left lobe.  Aside from extreme fatigue, I'm "stable."  Right now, I'm having problems with my rt. artificial hip dislocating constantly, so will need surgery for that.  Pink Grandma will have to get some help on this forum once I have surgery, as recovery is so long.  So that's me.

I really can't answer your questions about the bilirubin.  The only thing I can find confirms that an elevated bilirubin can be an indication of alcoholic hepatitis.  The dark tea-colored urine you mention is also from the elevated bilirubin.

It's hard for anyone who is emotionally involved with a very sick person to visit that patient.  I don't think anyone should expect you to be cheerful.  Just take it day by day.  None of us is ever guaranteed tomorrow, so stay in today as much as possible and try not to worry about the "what if's."  Most of the things we worry about never happen.  Stay as informed as you can, keep educating yourself, and deal with each thing as it presents itself.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/22/2009 10:03 PM (GMT -7)   
Thank you, Rick.  I guess it truly goes to show the doctors really don't know how it's going to go and supports the reason why they don't say anything and just continue to treat whatever they can and watch.  While I do not know how many trips you have made to the hospital, my husband has been warned many times the next time may be his last....but alas, he always thinks he has one more drink left in him, which can be drunk...and then that will be the last one.  You have definitely given me some hope of what he can be if he pulls through this.  So many talk about meld scores.  When I ran my husband's  numbers yesterday he scored a 30.  Obviously he is not a candidate for a transplant so I'm not sure what good this score is to me except to add to my worries.  I don't know if he will ever stop drinking, and I don't know if he knows either.  Certainly today, he says he won't, but we've heard that each and every time he has been hospitalized.    Three weeks in the hospital as of today, with an additional three weeks projected.  I'm not sure why so many in this forum are sent home, while they continue to keep him.  If they think you are dying they send you home?  If they think you are living they keep you?  Confusion....
 
I will keep you in mind and your courage and strength to find a new life that while limited or debilitating at times you are finding so much more rewarding than the one you had when you were healthy in body but not spirit.  Your wife must be a very special lady.  I can only hope if my husband pulls through this he will cherish his new life and second (3rd? 4th? 5th?) chance without dwelling on his failures and regrets and be able to overcome any pain, guilt, humiliation, self hatred, depression (one or all of the above) he may be feeling before once again jumping back on the path of destruction.
 
There's a lot of good saying out here in the blogs...one something about living with pain reminds you that you are still living...i don't think i have that quite right.
 

Post Edited (bessylu) : 6/22/2009 11:08:07 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/23/2009 10:31 PM (GMT -7)   

Rick, it sounds like you were a functional alcoholic like my b.f.  He also never missed work, didn't lose anything, and fortunately stopped drinking before he did any lasting damage.  He has been sober nearly 9 years now, after a slip when he had 3 yrs.  As you know, it's one day at a time.  I know that if I drink I will be dead in short order...and I'd like to stick around awhile longer.  I actually have no desire to drink any longer.  Cigarettes are another story.  I still crave those from time to time, although I quit 6 1/2 years ago.  But I know that if I smoked one I would be back to 2 packs a day in no time.  It's my addictive personality.  Some people say there's no such thing, but I'm here to tell you that there is.  I can have a craving, but I know I can't act on it.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2009 11:27 AM (GMT -7)   
Rick, I agree.  It's more important that you stay sober now than stop smoking.  I had about 16 yrs. of sobriety before I quit smoking.  And you will appreciate how I quit:  I was in a body cast, flat on my back in the hospital for 2 months (body cast 3 wks. and then locked steel hip and leg braces.)  I couldn't even get to the bathroom to sneak a smoke.  They had put a nicotine patch on me immediately following my admission.  When I finally got home, I bought patches for two weeks and then decided to see if I could do without them...and found that I could.  Don't know if I could ever have quit any other way.  I'd tried several times with the patches, but it took the body cast to do it!  LOL!  smilewinkgrin   tongue
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/24/2009 11:34 AM (GMT -7)   
I read somewhere that smoking also damages the liver...is this true?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2009 2:08 PM (GMT -7)   
Smoking damages everything.  Also makes it slower to heal.  It's not the smoke or nicotine that is as bad as the 10,000+ chemicals in tobacco, such as formaldehyde!  skull
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 6/24/2009 4:42 PM (GMT -7)   
Hi all, just a quick note to Rick.....To be listed at my husband's transplant center he couldn't smoke. Not even second hand smoke.........I had to smoke outside which I was already doing...just an FYI.

Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/24/2009 8:34 PM (GMT -7)   
Hi, Rick,
it seemed he was starting to feel better...or i should say act better, strengh wise. lucidity, trying to get up and walk the floor several times a day, etc. I noticed he was a bit weaker monday, and then more so Tuesday...try to chalk it up to my imagination, then today i couldn't get in touch with him at all untl late in the afternoon...he had been asleep most of the day, waking up just long enough to eat and crash again. he's talkng a little crazier and confusing himself. he seems to think the doctors are putting him on a new steroid treatment that 85% effective in people aged 50-85. I over heard him telling this to another friend who visited today, but he didn't mention it to me. he also told this story to my brother and he was feeling pretty optimistic about it. I checked with the nurse and she said he is on exactly the same stuff. The only steroid he is getting is pednizone and he's been on that for weeks...she did say they doubled the dose. Funny thing is, he doesn't remember talking to my brother today at all and how could he be asleep if he were talking to my brother mid afternoon.  So, i don't know if the doctors are trying to pump him up with positive thoughts about a new drug or he's just hallucinating. he stepped into the bathroom this evening and took quite some time making it back out....when he finally did he explained about the smallness and that's why it took him so long, and we were confused and just humored his story which launched his telling us about the nurse that was in there with him, but there was no one in the bathroom but him. maybe it's the meds he's on, maybe it's his kidneys failing or maybe it's the big long other word that I have difficulty pronouning or remembering, maybe not, but he definitely seemed much worse to me today, lethargic, unbalanced, no longer able to walk but a few steps before getting very fatigued...and beginning to look like a fall risk again. I keep looking for the flapping wrists they've told me about as a sign of (that word again), but all i see are the tremors. I desparetely need to quit smoking. I had quit for so long, and can do it through sheer will power alone...until my husband has another one of his episodes.  he wants the doctors to stop the diuretics because he's tired of having to use the bathroom so much....i'm sure they will talk him out of this.

Post Edited (bessylu) : 6/24/2009 9:37:16 PM (GMT-6)


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2009 9:48 PM (GMT -7)   

Bessylu, "that word" is encephalopathy.  It sounds to me like the Prednisone is causing him to hallucinate and act strangely.  It did that to me.  I just took 2 capsules (this was years ago) for arthritis in my neck, and started having visual and auditory hallucinations, felt like bugs were under my skin biting me, people were coming through the walls, etc.  It's what I would imagine a bad drug trip is like.  I was healthy at the time (except for the arthritis in my neck) and wasn't taking any other drugs, so I knew it was the Prednisone.  Except I couldn't sleep.  I went 2 nights with no sleep and hallucinating and on the 3rd day I took myself to the ER.  They told me I had a psychotic reaction to the Prednisone and to always note on my medical records that I am "allergic" to it.  I've never taken it since then.  In fact, I have bad reactions to all steroid medications.  So I suspect that between the encephalopathy and the Prednisone, that is the cause for your husband's loopiness...especially since they increased the Prednisone.   wink

P.S. To Rick:  There's another thing above that I've been through.  You just don't know the half of it!  smilewinkgrin   Everyone tells me I should write a book...but there's lots I can't remember.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/25/2009 9:36 AM (GMT -7)   
Well, the levels are still not improving.  The doctors now believe this is due to kidney trouble and are referring him to a specialist.  Wouldn't it be the liver causing the kidneys to malfunction?  Is there really hope to have the kidney specialist treat the kidneys which will cause the liver and bilirubin and amonia levels begin to improve?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/25/2009 10:26 AM (GMT -7)   
bessylu, yes, it is undoubtedly his liver disease that is affecting his kidneys.  I think I mentioned in a previous post that he may need dialysis.  This is not uncommon in someone with severe liver disease.  Natalie Cole just got a kidney transplant, as her kidneys failed from hep C.  The overuse of diuretics can also cause kidney problems.  I know you had said that the doctors stated he did not have cirrhosis, but I would ask them again about this, as all the problems he is having are ones normally associated with cirrhosis.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/25/2009 8:26 PM (GMT -7)   

how long were you in the hospital, Rick?  and how long after coming home did you start to feel better?

I can relate to the stories you're telling perfectly with dh, he's very confused off and on, slurring his words.  He gets a little better visually and energy wise and then worse.  numbers are the same.  Tons of blood taken from him today by the newly assigned kidney specialist.  Will have to wait and see what that is.  It can be the drugs, kidney disfunction or the encephalopathy.  I just know we're almost on week four and he's miserable, weak and fatigued with any beginning path of recovery lost once again.  He'll be 52 in August, and I know he won't want to spend the rest of his life in a nursing or assisted care living facility.  And if they put him on dialysis...well, that's one step closer to that kind of life, the way i see it.


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/25/2009 9:16 PM (GMT -7)   

bessylu, let's hope it doesn't progress to the point where he needs dialysis, but I want you to know that people do it as outpatients.  I take the handicapped van to most anywhere I need to go, since I don't drive and can't walk far enough to take public transportation.  There is a dialysis center near me and we pick up and drop off people there all the time.  They live at home, but 2-4 x a week, depending on their personal medical need, they go for dialysis which usually runs about 4 hours.  It's a slice out of a person's life, for sure, but doesn't mean they need to be in assisted living or a NH.  There are a number of these free-standing centers all over town.  Some also have it done as outpatients at area hospitals.

You really just have to take it one day at a time.  It's a roller coaster ride for sure, and there is no way to know what tomorrow will bring.  You just have to go with the flow.

Rick, thanks for sharing your experience with encephalopathy.  Do you think some of that was also alcohol withdrawal?  I'm thinking that with both you and Bessylu's husband, it could be a combination of encephalopathy and alcohol withdrawal.  But I also know what Prednisone did to me, so we can't eliminate that as a cause or contributing factor, either.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/26/2009 11:41 AM (GMT -7)   

Rick, between the time you got out of the hospital and the time you had your TIPs was how long?  I know that it was a struggle for you, just keeping to a low-sodium diet and off the booze...and that your minister friend was instrumental in keeping your spirits up and giving you hope.  I believe that God works through people and he was working through your friend for you.

Thanks for the kind words, but it's really a day to day thing.  None of us is guaranteed tomorrow.  Now I'm facing another hip surgery, but I've had nearly a year that I haven't had to have anything done and it was great!  When you look death in the face, as you said, and when one has gone through so much medically, you really learn to appreciate every little thing about being alive.  I don't have time to rehash past mistakes, dredging up old grudges, or bemoaning what could have been.  This is something my grown daughter can't understand.  I laugh at some of the things she flips out about because to me they are so trivial and not worth the time or emotion.  I was supposed to fly to NYC on Mon. for a 9-day vacation.  Instead, I will be at Mayo having hip x-rays and meeting with my ortho surgeon.  Sure, I'm disappointed, but better to just go with the flow than sit around being depressed because MY plans fell through.  For whatever reason, God has other plans for me and I have to trust that.

Bessylu, hang in there.  There really is no way to know what tomorrow will bring.  Please do try to take care of yourself while your husband is being cared for.  Remember, you are important, too.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/27/2009 8:01 AM (GMT -7)   
I had a nice long talk with the doctor yesterday. He said the panel is anything but optimistic. He needs a new liver and he's just not a candidate. I asked him about cirrhosis again, and he said his liver is 3 times the size it should be which is hepatitis and over the past 4 weeks, there has been no improvement, and the toxins in his system are beginning to take their toll on his body, muscle waste, and other levels beginning to be affected. His coagulation is about the only thing that has improved. While there are tests to determine varices (which the doctor is certain he has) and cirrhosis, they don't think he would survive the sedation to test let alone the procedure to help, so it is pointless. The doctor does not believe he will need dialysis...I'm not sure what this means....whether something worse will happen first or what. They've got him back on IV fluids again but allowing him to drink very little now, so he's dying of thirst...i brought him some hard candy to help him form some saliva. I know he wasn't able to hold his lunch down yesterday...and this is due to his pancreas acting up again, which had been maintaining good levels up until this point. He's having a hard time eating even though he knows how important it is....i know some of it's because it's painful for him to eat that and almost everything is unappetizing. The doctor also said he's known patients to be hospitalized 4 weeks to 4 months for this, but things aren't looking good. For all the time my husband has been in the hospital in the past and they've treated him, the liver has responded, and this may be the time, where the liver has finally decided it just can't anymore. They're taking blood around the clock now rather than just once a day....the doctor said the levels are all over the place and are changing constantly. He promised to send me a lab results sheet each day so I have something to compare too.

I didn't see a whole lot of confusion yesterday, just miserable and weak. If he could, I think he just wants to sleep, but can't until it's time for his drugs. So, i guess the fact that his blood is coagulating and he's not showing signs of encephalopathy is a good sign along with his not being asleep all the time.

I did ask the doctor if there was any chance his heart would just stop, and he said, no, but he could come up with at least a dozen other things that might happen, one being bleeding out, which with his blood clotting better now rules out..I didn't ask him to list the rest....but now i'm wondering....

I only went for a very brief visit last night. I was completely wasted. Went home and slept for 12 hours. I think I really needed it. Today's another day.

Post Edited (bessylu) : 6/27/2009 12:12:56 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/27/2009 11:43 AM (GMT -7)   

Bessylu, I'm sorry that your husband's prognosis is so poor, but glad to hear that you had a good talk with his doctor.  And especially happy that you got some good sleep.  You absolutely needed that. 

Our thoughts and prayers are with you.

Rick, moments like you had with the nurses are the best!  I've had a few myself.  wink

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/29/2009 8:30 PM (GMT -7)   
What information is there on how to ease the discomfort from the mouth sores? My husbands tongue is white from all the peeling flesh and sores, he indicates they're on his cheeks and he feels them down his throat, in addition to a blockage when he swallows food that feels like the food can't pass through but eventually does which he finds very painful. He's having a terrible time trying to eat anything at all now, evil meals he calls them and relaxes after dinner knowing he has another 12 hours before he needs to try to eat again. Thankfully they're now putting him on Ensure. His numbers have stayed the same the past four days....they're using the word stabilized but at the height of the numbers, I don't think there's anything stable about it....of course, I receive this information from him, and the promised numbers the doctor was going to leave me each day have not appeared.

It's so confusing, protein is bad, restrict it, protein is good because of muscle atrophy eat more, vitamin k good, now vitamin k bad. Drink plenty of liquids, no, restrict liquids, and stop all the diuretics. He is so weak and miserable. The doctors keep promising to bring in a walker so he can walk a bit so his muscles don't waste away entirely. This takes a special order from physical therapy...if they remembered to order it. He can barely make it around the bed before he's winded and feeling as if his legs are giving out. All this in a week??

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/29/2009 9:22 PM (GMT -7)   

bessylu, it's possible he has thrush.  Even if he doesn't and it's just a sore mouth/throat, there is a substance they can give him that he can swish around in his mouth.  I've heard it called "swish and swallow" but not sure of the brand name...maybe Nystatin.  It's an antifungal.  Ask the nurse or doctor about it.  There is also a numbing medication they can give him for his throat if the soreness or feeling of an obstruction is keeping him from eating.  I've had that same feeling, generally after surgery, because they put a breathing tube down the throat to keep the airway patent.  Ice chips are good and so are popsicles because they numb the throat.  But to heal the sores, he probably needs an antifungal.

I understand what you are saying about the fluids, etc.  That's why we say it's a "balancing act." 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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