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Update on dad with ESLD. Is anyone else having or know someone who's having similar symptoms?

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Posted 1/3/2013 7:52 AM (GMT 0)
I don't remember if I mentioned this in an earlier post, but I will just mention it again. My dad was a VERY heavy drinker, but now only drinks a couple of glasses of wine a day (too much for him, but he will not stop) and he also has been on oxycodone for years after a back injury. I'm in L.A. and my parents live in San Francisco, so the information that I get is through my mom. I talked to her today and she told me that my dad is looking weaker than ever, looks like he can barely open a magazine. Then she said that he had to wait for his prescription of oxycodone, so went without for a day or so. I know this drug has horrible withdrawal symptoms, but some of the things my mom told me sounded like it was related to cirrhosis. She said he was sleeping in the day and up all night, I know that jives with cirrhosis, but can someone explain why this happens? When my mom got up this morning, there were open packs of cigarettes in every room with matches, which he never uses, there was broken glass on the kitchen floor and in the midst of all this, my dad was making hot dogs! Hot dogs at 8 in the morning! Not because he wanted one, but because he was apparently "making dinner." He has also been mumbling incoherently a lot, then when my mom doesn't understand him he tells her she is hard of hearing. He also has this catatonic look on his face (which I've seen) and he just stares at the TV. This is so hard for my mom since I'm so far away and every time I hear about my dad, I just get so anxious cry . Any feedback would be greatly appreciated.
Posted 1/3/2013 12:51 PM (GMT 0)

edited this , sorry I was thinking he had cirrhosis already diagnosed, was thinking he had the same as my brother. 

good luck to you Ava, I;ll pray your dad gets better

Post Edited (Germophobe) : 1/3/2013 6:59:36 AM (GMT-7)

Posted 1/3/2013 1:29 PM (GMT 0)
 Ava , Sadly enough you may just have to get used to dealing with anxiety about your father . Even if he was to get proper medical attention at this point he still has to go through a period of troubling times , I say this not to be hurtful but to prepare you for what's possibly ahead . Do you have concrete evidence he has cirrhosis at this point ? A long history of alcohol abuse doesn't always mean a person has cirrhosis , While yes it increases your chances of getting cirrhosis but not all who drink to excess will get the disease . It boils down to a roll of the dice so to speak .

 The reckless behavior of drinking and taking medications is compounding his problem if he does have liver disease . Have you considered that he ran out of his prescription early due to either abusing the medication or even worse forgetting proper dosages ? Remember you are not getting the info first hand . Caretakers ( Your mom ) are often the victim of their own willful optimism which usually leads to some form of enabling the patient ( Your Dad ) . Fear of the unknown leads to irrational behavior on both parties behalf .

 What can be done from your position ? If this is Liver disease and that needs to be determined by a Hepatologist , He will have to be willing to go through the medical hoops ( appointments ) without a fight . Can you see to that ? Proper dosages of lactulose and if need be Xifaxin will have to be administered along with possible other medications . Can you see to that ? He will have to go through 6 months of required alcohol and drug treatment programing ( AA or Therapy ) . Can you see to that ? When he becomes combative due to escalating ammonia levels . Will you be there to increase the lactulose dosages to relieve the symptoms for him ? When he falls due to lack of balance and coordination or hurts himself . Will you be there to patch him up and get him to the E.R . ? When his bowels become uncontrollable due to medications will you wash the clothes for him ? This list of questions so far only scratches the surface but are just a few for your consideration .

 I understand your dilemma but there is really nothing you can do other than be there for your mom via the phone . We have experienced caretakers here that live with spouses who have trouble dealing with these issues , They cope or they walk out . I have only seen a few in my time here that have walked away from there family , The majority stay and fight a uphill battle daily ( Some without much more than a whimper of the hell they see daily ) . Your mom needs to start a account here and get the much needed info and regular support she needs from the ones who know . That is something you can do . Short of giving up your job and life there's nothing you can do . People do get better from this disease ( I am one ) . But the commitment is something he will have to take . Your mom will have to give a harder commitment in his future care . We have the resources here for her and you , but this isn't something you can handle in your position .

A. Ziffle     

Posted 1/3/2013 4:33 PM (GMT 0)
This is quite some post, Ziff! From the heart, from someone who knows! Thanks for being you and telling folks HOW IT IS. Mama Lama
Posted 1/3/2013 7:47 PM (GMT 0)
Thank you. I'm sorry, I was writing quickly yesterday, but my dad has been diagnosed with cirrhosis. He does not want treatment, does not want a new liver, basically doesn't want to try. He only takes water pills. I begged him, then got mad at him and told him he was a selfish SOB, but he is as stubborn as a mule.
He gets his medication from the VA, from the same doctor that diagnosed him and he probably does abuse it to some point, but he does get it is from a legitimate source, so I'm not sure he can be too careless about that.
My mom would never walk out, but I don't think she knows (or really wants to know) what the progression of this disease is like. I have no fantasies about him getting better and I know this is probably one of the worst ways to die and the worst way to watch someone die, but I still feel sick whenever I hear about it or see it.
I was wondering though about his behavior and if it sounds like hepatic encephalopathy, he does forget things but then again, he's always been like that.
I have read some pretty awful things about what happens when esld is basically just left to run its course and I was wondering what exactly happens when the body breaks down; please don't worry about my feeling or sugarcoating anything because I need to prepare myself and my mom for the absolute worst. Thanks again.
Posted 1/3/2013 8:00 PM (GMT 0)
Ava, from what you describe, your dad is displaying classic symptoms of hepatic encephalopathy (HE.) While not everyone who drinks to excess develops cirrhosis, I've never known of anyone who had HE without also having cirrhosis. The liver becomes too damaged to filter toxins, so they go to the brain in the form of ammonia. Treatment is Lactulose and sometimes Xifaxan. Those have to be monitored and sometimes doses changed. Your mom would have to do this, as Ziffle said.

As you realize, continuing to drink any amount of alcohol advances his liver disease. Alcohol and an opioid is a dangerous combination. Most opioids take time to metabolize. In a diseased liver, which is having difficulty filtering toxins, the addition of alcohol can be deadly.

At the least, his liver disease will continue to progress until death. I'm sorry, but the prognosis is poor.

P.S. I was posting at the same time as you. Some of the later stages of liver disease: Falling a lot, kidney dysfunction, muscle wasting and weakness, personality changes from HE, bleeding from ruptured varices or intestinal bleeding, poor appetite, and sometimes infections. The body just starts shutting down.

Hugs,
Connie
Posted 1/3/2013 8:22 PM (GMT 0)
Thanks, yeah his muscle wasting started a couple of years ago and he just looks like a skeleton now when he takes his shirt off. It's horrible to watch and I don't think he knows exactly how nasty cirrhosis can get in the end.
I'm so glad that I can post here, not only for feedback, but to just share my feelings. It is so hard to watch a man that was always so big and strong turn into this. I know his body has begun to shut down, it's obvious from the way he has changed physically, but what happens when the muscles waste so much that he can't use them?
There is a certain guilt I feel also because he was pretty horrible when I was growing up as alcoholics are and a lot of emotional abuse. I would pray to God that he would just die. As an adult, I've had my fair share of fights with him, but in the last few years he's become the dad that I so wished I had when I was little and it sucks that it took thirty years to get here and now he'll be gone, probably this year.
Posted 1/3/2013 8:23 PM (GMT 0)
Another case of slow suicide.
Posted 1/4/2013 1:56 AM (GMT 0)
 Ava , To answer your question on muscle waste : Have you seen pictures or know someone that suffers from anorexia , Well that is commonly what the disease will do ( It did with me anyhow ) . It's hard to imagine for most people how the body will fight to stay alive long after the will to live is gone . Our bodies need nutrients to survive , A person that suffers from large quantities of fluid accumulating in the abdomen area feels full and often eats like a finicky bird ( A morsel here and there ) . The body tends to go into a self defense mode and finds nutrients in muscle tissue to survive , This is when you see muscle wasting . 

 A I.V or forcing oneself to eat nutritional meals or supplements like the shakes found in most stores has worked for myself and others here . Again this only works if the patient is willing to fight to live . Unfortunately your dad has given up . In most cases I have and still do offer details on what I personally experienced and what I know others have shared here , I see no point as this moment to share the details or possibility of what may happen . It's gruesome and a horrible way to die .

The problem that most people have with a diagnosis of End Stage Liver Disease is they don't realize just how long and drawn out this disease can be . It generally can devastate a strong bonded family . Your focus needs to turn to your mother , Your father is no longer relevant in the matter of assistance . Let me refer you to the caregivers thread on here and should you need my further assistance I would be glad to help as much as I can . I am a patient , I am biased and my knowledge of caregiving is limited . We have capable folks who have been there as indicated in the prior post .

A. Ziffle

Posted 1/4/2013 2:54 AM (GMT 0)
My husband was only weeks from death when he got his transplant.It was a tough time for all of us. He was 240lbs of muscle, 6'4", a communications lineman, that climbed utility poles, worked 12 hrs a day, and ran circles around the younger generation working out of bucket trucks. When he finally got out of SICU, after his TP, he was 126 lb bag of bones. The 6 months before TP, he was in and out of the hospital all the time. First from dehydration from all of the diuretics, and then from HE. He would go in and out of HE coma like states. The last 4 months, it seemed like the lactulose and the Rifaxamin weren't even working. He would get out of the hospital, be normal for a few days, and then 48 hours later the HE was taking over, no matter how much lactulose he was given. Towards what would have been the end, he was given lactulose in his rectum. When he was home, we changed alot of sheets on the bed, and many sleepless nights taking care of him and wondering if he was going to make it. When we were called to the TP Center it was beacause they wanted him there so they could be more aggressive about getting him transplant ready. The Dr's and Transplant team were skeptical that he would live through the TP if he got well enough to have it. He surprised us all when he came out of his HE coma like state. He lived through the TP and had to be opened up and washed out due to infection 3 weeks after the surgery.My husband is now 170lbs, he works out a little everyday, and each day feels better and better. The DR's here and in PA, the TP facility call
him thier miracle man!!

All of this was done @ VA facilities!! I hope he will change his mind about transplant. Please tell him my story and what the VA did to save my husbands life!! It cost us absolutely nothing and he got the best possible care. I was put in a hotel less than a mile from the VA for 3 months at no cost to me what so ever, A Marriott Residence Inn, kitchen, living room, bedroom and bathroom, breakfast buffet every morning and dinner 4 nights a week.

He is a veteran, and he deserves to live for serving his country if for no other reason!!
Good Luck and God Bless You!

Debbie
Posted 1/4/2013 2:55 AM (GMT 0)
Thank you so much! Yes I have seen anorexic people and my dad looks very similar, he actually looks like those poor African kids that are starving or have AIDS. I was talking to my mom today, telling her about a few stories I read about people bleeding out and I know she's scared but I told her that if anything happens to just call 911. I was telling her that I wished he would just go to sleep and pass that way; I don't want any of us to have to watch as his body shuts down. I am absolutely positive that he has no idea how rough the road is that he's chosen to take.
Posted 1/5/2013 1:23 AM (GMT 0)
As a newish but regular visitor to keep myself on top of final stages. I was so close to getting, Ava I really feel for you as I have very close family in USA who could now be going through what you are. I truly do believe you have got to want to live, I get angry when I hear someone say they are selfish. I filnd this quite disturbing, as i have stated this is a mental illness, I am in the UK & have just done some reading on one of our local websites, if one of our moderators lets me know if I can give the link you may find it interesting. Would it be wise for your mum to get some councilling to help her come to terms with this & prepare for what lies ahead. If he so weak does your mum buy alcohol for him, bearing in mind if she does, he cannot stop straight away again medical advise for you would be good maybe to ween off it. Igo through some bad days, feel like I may be carrying excess fluid on my stomach, like your dad I lost a third of my body weight, am getting it back but I still worry as Ziffe says its like rolling a dice & I feel mine is like a ball waiting for the square shape. My prayers & thoughts are with you & your Mum, Take care & keep strong.
Sue (Liverpool)
Posted 1/5/2013 3:26 AM (GMT 0)
With all that I forgot to ask your advice, I have noticed my tummy is swollen & top parts of my legs, I just googled what Iam about to ask & it brought me back here, I have not been taking Lactulose precribed by my GP, although I know I have chronic liver disease, Iam lucky if I go the loo once a day & my wee smells also can go dark in colour, could this be amino acid level high/low.

Sue
Posted 1/5/2013 3:41 AM (GMT 0)
It's the ammonia that gets high in HE. Try drinking lots of water to keep your kidneys flushed out. Also, go salt-free, using lemon or salt substitutes and see if the fluid disappears. The Lactulose causes diarrhea, through which the ammonia is removed. It doesn't cause you to pee more, as far as I know. A diuretic such as Lasix would do that.

Hugs,
Connie
Posted 1/5/2013 4:45 AM (GMT 0)
 Benny , What you are describing with swelling issues sounds like fluid or Ascites building up . You take diuretics for those problems ( Spirolactone , Aldactone , or etc. ) to make you pee more frequently . Those meds get rid of the fluid issues .

 Lactulose is for the removal of toxic waste that accumulate in the body in the form of Ammonia and tends to give you diarrhea . Not to gross you out but you do need to be having at least 3 loose bowel movements a day to insure your getting rid of the a ammonia properly . Another thing you may keep in mind is the color of your stool tells a lot about your health . Dark brown is considered to be normal , lighter shades going into a tan color is not a good sign . Dark black stool could be blood and surely needs to be checked out ASAP .

Lactulose and Diuretics are two different medications for to separate issues , They both must be taken as prescribed to keep you leveled out . Please do better about taking the lactulose .

 A. Ziffle     

Posted 1/5/2013 11:57 PM (GMT 0)
Thanks guys, I did stop Lactulose I didn't realise how important this is, I have started and will continue to take. I really struggle going the loo when I do go I feel like I could burst a vessel it's not easy, as for the colour it can tend to be more tan than dark, I just thought this maybe what I've eaten another one for me to watch. I would like to say being apart of this forum teaches me so much, and as to how amazing, the human body (we all take it for granted) is.

Thank You all for sharing your experiences & knowledge with us
Sue
Life is Precious
( reckon I should use this at the of my thread, what do ya reckon guys)
Posted 1/6/2013 1:00 AM (GMT 0)
Start using lactulose, and you won't have to worry about bursting a vessel, unless you're calling the toilet a vessel.
Posted 1/6/2013 1:15 AM (GMT 0)
Ever the punster, that David. smilewinkgrin

Stool color does depend a lot on what one eats...or doesn't. Mine tends to be tan, since I don't eat red meat or as many dark greens as I should.

Sue, when you say it's difficult going to the bathroom....even on Lactulose? If so, you're not taking enough.

Hugs,
Connie
Posted 1/6/2013 3:47 AM (GMT 0)
 Vessel ? Loo ? Those Brits sure do talk funny . smilewinkgrin

 A. Ziffle

Posted 1/6/2013 2:42 PM (GMT 0)
HAPPY BIRTHDAY, PIGGY!
Posted 1/6/2013 3:24 PM (GMT 0)
 Thanks *D* but it's actually Tuesday . Gotta go see Hepatologist tomorrow shocked . Hopefully a good trip for both me and my friends wife ( She is scheduled for her Cancer testing to see if it's still in remission ) She's at one end of UNC and I'm at the other , Should make for a long day but I enjoy their company .

 Ziff ( Rick )

 

Posted 1/8/2013 1:47 AM (GMT 0)
Thanks I have been to see my G.P. today my billirubin is now 30?? Been like this for some months, I still am only getting 2/3 hours sleep, Ido nod off in middle of conversations, spell wrong too. Iam now taking lactulose 3x5mls 2x a day. My tummy has rumbled for 2 days, strange, I also bought Milk Thisle Tabs & l- Glutathione to take. I do as stated take spironolactone & fluoxetine, Thiamine, Vits & Citalopram, so do you think this would be ok, my doc says I don't need them,but I believe this is down to bugdet on medications as we do have NHS so I don't pay for my treatment or medication (although I haved payed NHS contributions through my salary when I was able to work). My day was saddened today I learned a friend of mine is in hospital,she has been alcohol dependent for quite a while she is 63 now only about 40lb, her husband tells me her liver is ok he believes this is because she has had a colostomy since a teenager, today she is having a blood transfusion he's not sure why, and memory has virtually gone, could this be true with colostomy, she may god willing bull through?
Ziff Many Happy Returns, have a bacon butty on me, vessel is for vein & loo is Bathroom I am guessing you are in South Carolina, or even Alabama. You sound
I,e a good old friend of mine who used to say 'i carnt understand a carn dand word you British folks say'.

Sue (Liverpool)
Posted 1/8/2013 2:47 AM (GMT 0)
 Sue , I'm from GA. but reside here in N.C for the last 8 years . I was joking about the loo and vessel and as you might say " having a go at you " with the British thing . A Australian fellow that used to post here used to call me on the phone , He thought I sounded like Larry the cable guy ( A Redneck comedian ) . I never could understand a flippin word he said 2/3 of the time but listening to him cracked me up .

 Sorry about your friend . I understand about the medication cost and a tight budget but a simple multivitamin might serve you just as well , Just be sure and get a good type as the cheaper ones may not be beneficial at all . Just read the labels and compare . Be careful budgeting your health by playing with miracle cure medications , There is no known supplement scientifically proven to enhance your liver . Maintaining it with proper diet and prescribed meds are the best policy as your doctor suggested .

Just think if someone ( Drug Manufactures ) could have made a profit off of the grass in your back yard , You wouldn't have grass in your backyard . Of course there is one exception to this GRASS rule but that only grows in * Davids * backyard .

A. Ziffle

Posted 1/8/2013 3:33 AM (GMT 0)
Is Ziff hinting at something not being kosher...
Posted 1/8/2013 4:05 AM (GMT 0)
Thanks for the avice Ziff, of course I know you are taking the Mickey with me, it's what I love about American fellowmanship. Don't think I'll go into the kosher thing David, I have discovered since talking to you guys there is a medicine that costs nowt, it's a big old fashioned smile (;-) I can now talk & see my family through an ap on my iPad called FaceTime so long as anyone with Apple iPad/iPhone has this app, it's fantastic like there in the next room also keeps me going when I miss them all.


Sue
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