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Posted 8/28/2005 12:47 AM (GMT 0)

I have been lurking for a few weeks since I found this site on google.  While my husband doesn't have hepatitis he does have cryptogenic cirrhosis, which means his liver is failing and they don't know why.  He was diagnosed in april this year and he is not as bad yet as some of the posts i have read on here, I can see him failing a little every day.  I know his varicies are bleeding again not as bad as april but he is getting pale.  hgb was 11 a couple of weeks ago will have it checked again on tuesday.  Guess I am feeling a little, no a lot, overwhelmed today and sad.  I have spent many hours researching and I am a nurse so I am comfortable with the medical stuff. It is the uncertainty that gets to me and so many variables with liver disease.  Maybe I have educated myself to much and am only seeing the worst case scenerio in every little thing.  Anyway thanks for letting me vent.  I dont really have anyone I can burden with my worries and my husband isn't the worlds greatest communicator sad  .

                                                  Peace and blessings to everyone. 

Posted 8/28/2005 1:00 AM (GMT 0)
Welcome, mnmom!

You have found a great place to share your worries and let go of some of those burdens.

I was in the same boat about a year ago and this place saved my sanity. (Although, there are those that would tell you I never really had any! yeah )

God Bless.  We'll keep you both in our prayers.

Let us know if there is anything we can do to help.  (I know some really bad jokes?! tongue   )

Posted 8/28/2005 1:09 AM (GMT 0)
WOW fast reply!!  Could always use a joke, good, bad , naughty  it all good!!

where was your fiances transplant done?  my husband also has ascities portalhypertension and a huge spleen.  type 2 diabetic attempting to keep blood suger under control is a real issue we struggle with  as the liver is also invloved in the metabolism of sugers. Everyday is a challange!!

Posted 8/28/2005 2:15 AM (GMT 0)
mnmom - Some days I'm quick; some days, not so much.

We're in Phoenix, Arizona. Mark didn't have any sugar problems, until he started treatment for HCV this year.  In fact, he kept Brach's, Nestles, Hershey and Russell Stover in business, prior to the transplant.  I can't imagine how we would have kept his calorie intake up if he'd been diabetic on top of everything else.

I wouldn't wish the last 2 years on my worst enemy; but, I can tell you, I have grown in ways I'd never imagined at my age.  (Lost 35 lbs in the process, too!!  )

 

Post Edited By Moderator (~Jennifer~) : 10/13/2005 6:37:13 AM (GMT-6)

Posted 10/4/2005 10:11 PM (GMT 0)
I went through a year or two of varices treatment before my transplant--saline injections. But I am 13 years out--transplanted August of 1992. I had it done at OSU in Columbus and they were great. I teach school and was back to work the next fall.
Posted 10/13/2005 7:34 AM (GMT 0)
This is my first post - I'm dealing with my Fathers liver failure and he isn't the best communicator either so that is tough...

My Dad was recently hospitalized with liver and kidney failure due to drinking he has cirrhosis and has had it for years - the Dr. didn't think he'd leave the hospital - well my family and I (husband/kids/dogs &cat) have been living with him in his house for 6 weeks now - he is in hospice care - he is walking slowly around and wanting to get back to normal, going a bit stir crazy and his mind is fuzzy.  I've been pushing the lactalose, which he hates taking, but he has taken it now a couple days.  It is hard he wants to be normal - I woke up to him doing laundry in the basement today - I'm very worried about him falling but I'm letting him have his space.  I can't prevent the fall I just hope its in a soft spot.  Some days I feel great and most I feel frustrated and overwhelmed.  I wish I could see how this is going to go but I know I just have to take it as it comes.  The hardest part is not knowing what will happen, I don't think he is going to recover fully but he sure seems to be getting stronger every day.

Thank you to all the posters - reading past post I got some good info.  I wish you all well and a good day:)

 

Posted 10/22/2005 7:48 PM (GMT 0)

I am answering the lady with the husband with the failing liver

My son has ascities and I am very concerned

I have him on some special herbs that theyhave done a blind study on thta is to regenerate the live and help the acities

I will be glad to send you a link

Let me know how he is doing

sherry O

Posted 10/22/2005 7:51 PM (GMT 0)

This post in in answer to the person whos dad has liver problems

Is the lactolose helping

How does he take it by mouth?

I am giving my son special herbs done in a blind study to regenerate the liver  I will be glad to send you a link

Let me know if he has ascities

sherry O

Posted 10/22/2005 7:52 PM (GMT 0)
I would like to know if anyone knows of anything that helps acities with liver problems
I need any information I can get
sherry
Posted 10/25/2005 1:26 AM (GMT 0)
Sheery O

My Dad is the one taking the lactalose - he does take it orally in liquid form - I notice a big difference when he takes it - it does make him go to the bathroom right away - it seems to be going through him so he doesn't like it - I also got him some herbs - milk thistle seed - my friend who is great with herbs recommended it so far so good. She told me they use it in Europe for patients who eat poisonous mushrooms and it helps to regenerate the liver.

My Dad's recovery has been pretty miraculous - since my post he is almost his old self - we go to the Dr. Monday so I'll know more about the blood tests - I have no idea what to expect
Posted 10/25/2005 1:33 AM (GMT 0)
Sherry O

One more thing - My Dad does not have acities now - he had a swollen belly in the hospital but they didn't drain it and it went away - he hasn't had many of the symptoms I see on this site - including the acities - he bleeds a bit but nothing too bad and he hasn't gone into a comma from the amonia yet

Also just diet wise - caffine is bad for the liver - lots of greens - veggies - fruit in the diet and as much water as he can stand - distilled water is best - my Dad also gets a Detox tea from the chinese store - the first time my Dad turned yellow from drinking my Mom made tons of soup and used leafy greens - she nursed him back to normal levels with diet and abstinence.
Posted 10/26/2005 5:04 PM (GMT 0)
Hi, I,m new here,

My husband has ESLD. He just had the "TIPS" procedure done on Oct. 13th.

He was in the hospital for a week. He developed encephalopathy 3 days after it was done,and they had to get the lactulose dose right so they could get him alert enough so they could discharge him. The first day home was ok and the second, but day 3 was a living hell. I woke up feeling like the house was on fire,he had turned the heat up as far as it could go. He could hardly walk, he pooped all over himself and the rug as we struggled to the bathroom many times that day. He didn't want to eat that day, but I got him to take his meds. He came around about 6pm that day and I was able to get him to eat a  bowl of oatmeal.

I had hoped to get him in a sub acute rehab after his d/c from the hosp.

but he was walking to well with the Phys therapist to qualify.

I work full time at the hospital as a unit sec., I had my mom comming to check on him and give him lunch, but on Monday I made his breakfast and after he was done he told me his arm hurt, so i took him into the ER where i work because i thought he was having a heart attack.We spent six hours there and they d/c'd him home. They said they thought it was just his neuropathy from his diabetesis. I took the rest of the week off from work, cause i just can not leave him alone. Today is another bad day. I'm going to try and go back to work next week. My mom and aunt have volunteed to take turns staying with him during the week, thank god, cause i didn't know what i was going to do. I have to work to support us and also for the health benefits.

I'm so glad I found this forum, I just feel so alone and need someone who understands.

Posted 10/27/2005 12:09 AM (GMT 0)
to lo57

I know exactly how you feel, when they discharged my father he had pooped all over the floor from his bed to the bathroom dragging the catheder, at 2:00 AM - I didn't know if I could take it either - he has gotten better but he hasn't had the TIPS procedure (maybe different cause of the ESLD - I'm new to all the terms) - My Dad is also freezing - so the thermostat is at at least 78 all the time - I thank god that I work a swing shift and have a great husband otherwise I have no idea what I would do - It is so hard arranging care - so nice of your Mom and Aunt. Can you get a commode so he can just stand up and sit right down so he doesn't have to walk to the bathroom? Your insurance might provide one or pay for part.

I know one day at a time is cliche but I just think in the a.m. ok I just have to get through today and then I can sleep...

hang in there
Posted 10/27/2005 12:46 PM (GMT 0)
 Hi Pn16,

Thanks for answering so quickly. I do have a commode, but he won't use it.

Yesterday he had diarrhea and he let me put adult briefs on him. I just told him that he's got to help me out sometimes too. He had the TIPs done because he was going for a paracentesis every two weeks to get the fluid drained (called ascities). The Tips was supposed to solve this, but he still

looks like he's retaining fluid and it's left him so confused most of the time.

I just feel we went from worse to worser. We are going to his GI dr. today so I'll just have to wait and see what he says.

I really am trying to take it one day at time, I give myself some timeouts by reading which I enjoy. I'm reading the Da Vinci Code.

 Well I have to start the day now, if you need any help with any of terms used for this disease I'll try to help you.... Thanks

Posted 11/8/2005 6:33 AM (GMT 0)

Hi lo57,

Hang in there - my Dad is almost himself but still confused - it is hard convincing him to take the lactulose because it really runs through him but now he is anemic so he is taking iron so he needs to take the lactulose - I know he is ready to be back to his old self but I don't know if he'll get all the way there - I hope he can even if it's for a short time - his legs have started to swell but not his abdomen - thank goodness for small things I guess - he is taking water pills but those are hard on the kidneys - it just keeps adding up - it is nice he is his joking self now though - I'm enjoying my time with him

Posted 11/12/2005 8:58 PM (GMT 0)
Hi PN16, I glad to here that your father is doing better. I wish I could say the same about my husband. We had a really bad night and not a very good day today. He scared me last night sometimes he gets really combative with me and gives me a hard time. I could see that he was getting goofey again when I got home from work and my Mom said that he was having alot of trouble walking and all he wanted to do was to go back to bed, he was up and down etc all day long. I gave him his lactulose early trying to ward off worse goofies. He was just so restless he wanted something and when he is like this we play the guessing game, bathroom?,

bed?, eat? drink? Its like dealing with a 175lb two year old. He was pretty good all week, but it seems to go down hill by the weekend, I guess the toxins build up all week and peak on Fri. He's on alot of lactulose, he takes

2 tbs  at breakfast, 1 at noon, 2 at 5pm and 1 at 9pm.  He doesn't take any dirurectics any more because he's in chronic renal failure now also.

I'm just thankful I have my mom and daughter to help me out with him during the week so I can work. Take care bye for now.

Posted 11/15/2005 1:34 AM (GMT 0)

Hey lo57,

Hang in there!  It is so hard - I was just thinking last night - I'm so glad my Dad is mentally back to himself he was like your husband combative and pissed off and feeling crappy and paranoid like I was doing this to him every day it would just bring me down - and your right about the weekends - by Thursday (even now) I think wow he is doing great and then he slows down on the weekend.  I noticed with us too - my Dad would start feeling better and do too much and not eat as well and I think that contributes to the weekend slow downs???  He seems like he has had a few beers it is wierd.  This past Thursday I thought - wow he is back to himself - and then Sat. he walked about 3 miles and Sunday he was wiped out.  My Dad just ended the water pills so I hope the swelling stays down - the nurse came today and seems to think they will release him from hospice when the 90 days is up (in a couple weeks) so that perked him up.  I know I have to just enjoy this time with him but now the subject of us moving out will be comming up and then we will have to have actual conversations about his health and how he got to the place he is at and how I'll have to help - and him not driving - which will not be fun and I'm just always waiting for the downhill slide.

Does your husband get frustrated with you asking what he wants?  My Dad would go nuts but I knew he wanted something but he couldn't articulate it and he would say I just want you to stop talking (adding a few choice words)- AUGH - it hurt my feelings alot and I understand his frustration - my family would rationalize it for me but it still hurt and brought me down  - I hope this time I have now I can figure out how to handle it when it happens again.

Here's wishing you some good days - thanks for listening!

Posted 11/20/2005 11:23 AM (GMT 0)
Hi PN16, I'm happy for you, it sounds like your father is doing so much better. My husband is now on Hospice. He had an appointment with our family Dr. on thurs. He had a really bad week, he could hardly walk and slept about 90% of the time. My daughter helped me get to the Dr.'s office.  It took about 15min just to get him in the car and then another 15min to get him to the lobby,and he just wasn't able to go any further. I ran down the hall to the office to see if they had a wheelchair but they didn't so I used a office chair with wheels to get him the rest of the way.....What a mess we were all exhausted by the time we sat down in the office. The Dr came in and examined him and I told him about how really bad the week had been. He told my husband that he could either admit to the hospital or would he like Hospice and proceded to tell him about hospice. I will be forever greatful to this very caring and compassionate Dr who takes so much time with every patient. He told him everything that we have been trying to get up the courage to talk to him about. My husband had been on the transplant list but was suspened, because of his drinking, they had him going to a Psychatrist to try to help him. He just kept talking about going back to the Uninversity to get back on the list, but I knew it just wasn't going to happen. The doctor told how really sick he was and it was time to make a choice and he opted for Hospice. The Dr. made the arrangments with them and they called me and they were coming at 400 on Fri. after I got home from work. I went to work on Fri. and got a phone call from my Mom,she took care of him while I was at work, he had fallen on the floor and could'nt get up. I rushed home from work and had to call 911 to help me. They came and got him back to bed. I called Hospice to see if the could come earlier and they did. I could'nt get him to eat or take his meds he was very agiatated. The hospice nurse ordered him some ativan that we could pick up at our pharmacy because our emergancy box of meds wouldn't arrive until Sat. The ativan really helped calm him down, but I could not get him to eat or drink anything. Sat the meds came and the nurse said to start him on the morphine along with the ativan. We are giving it to him every 4hrs and he is calm and peaceful now. He hasn't anything to eat or drink since Fri morning, I moisten his mouth with the toothettes dipped in water and put chapstick on. I don't think he will last too much longer my job now is to just make him comfortable as possible . It is so very hard to go thru, but I have my daughter here staying with us, she has been my rock, and the support of my family so I will be ok but it's so very, very hard. Thanks.
Posted 11/22/2005 1:24 AM (GMT 0)

lo57,

I'm so sorry to read what is going on with you - I'm glad you got hospice help - they are terrific and they really helped me to be calm - gave me good information and advice -- you and your family are in my thoughts and prayers.

Posted 11/26/2005 11:33 PM (GMT 0)
Hi Pn16, My husband passed away on Nov 20th, Sunday at 9am. He was only on hospice for three days, it was very quick, but he is at peace now. He was just so very sick. Thank you so very much for your thoughts and prayers.

Posted Today 6:50 AM (GMT 0)

Lo57 -

Oh I am so so sorry.  I'm just so sorry.  Your in my thoughts - take care of yourself.

Patty PN16

Posted 12/6/2005 5:18 AM (GMT 0)
Reply to LO - my husband passed away October 18th from ESLD.  He was waiting for preevaluation at UCLA and had a flu shot, parencenthesis, got double pneumonia and sepsis, along with his kidneys shutting down on October 17th.  I am beside myself with grief and missing him so much and my thoughts and prayers go out to you.

Jennifer

Posted 12/15/2005 4:26 AM (GMT 0)

Jennifer -

I'm sorry - my thoughts and prayers go out to you.

Patty (PN16)

Posted 1/5/2006 7:39 AM (GMT 0)
Hi everybody,I would just like to say something about the acetties if I may. I am a sever addvanced cirhotic patient. My Drs. told me to help with ascities, my docs told me no green teas,,very restricted sodium, &reduce fluid intake to 32 ozs. per day to avoid the fluid buildup around the liver & to be cautious with fruits & vegatables high in vitamin A as this is toxic to patients with liver disease as is with green teas. Always check with Dr, or pharmacists about herbs to as many of these can also be harmfull to a sick liver tho the patient may appear to be ok until the onset of liver failure. Take care everyone & God Bless. later...
Posted 1/6/2006 12:18 AM (GMT 0)
My sympathies to those who have recently lost loved ones.  sad   Sometimes it seems patients are doing better, and then something happens and they take a nosedive and it's all over.  Just know that they are at peace now.

Lerie, your post about green tea sprang out at me.  I switched from coffee to green tea about 6 months or so ago and have felt much better.  I have mentioned to at least one oncologist and one GI doc about the green tea and they didn't say anything about it.  I always drank coffee moderately, but it began to give me terrible heartburn.  Then I saw something on Oprah about green tea aiding weight loss (stated by Dr. Oz), which is when I made the switch.  I didn't lose an ounce, but felt so much better that I've stuck with it.  For those who don't know, I have active hep C and also hepatocellular carcinoma...but no cirrhosis, no ascites or varices.

I just spoke to the radiation oncology nurse the other day about when the TheraSphere treatment will begin (soon!), and when I next speak to her or the radiologist or oncologist, I will ask about the green tea.

How about other teas?  Is it just green tea that you have heard is toxic to diseased livers?  I was told that iron is, and I take multivitamins without iron...but at one time I had to take iron pills for a week or so, as my iron was too low.

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