end stage liver failure part 2

Jamie, I hope your mother's lungs don't get any worse. I will be praying for her. Did you notice any changes in her since the change in her meld score? My husband's meld score was at 10 a couple months ago and he isn't supposed to have anymore testing until the end of this month.

My husband has problems with his ammonia level also. I agree, I feel like I have another child to raise at times. Sometimes I have to explain things to him that any other time he would have known.

Did you ever find the litter?

Good morning Jamie, So sorry that you are going through this. Have a family talk. Let everyone know what's going on. Work out a plan for everyone to chip in and help with the mom sitting. Once I realized that my husband was at the stage where he really couldn't be left home alone anymore I took off work. And I agree being home 24/7 and not being able to get out and do some of the simple things like grocery shopping is horrible. By then hospice was involved with my husband. I was assigned a volenteer who was able to sit with my husband once before he died while I went to the doctor for me. They gave me the boost I needed to start asking family for help. I asked his brother and 17 year old nephew a time or 2 to sit with him for a few minutes while I ran to the corner store. I utilized my adult daughter to do some of my shopping for me. They would have been there for me earlier but I didn't ask. I can relate to the getting anger part. I think that every caregiver goes through it. What you are doing is harder than any money paying job out there. It's draining both mentally and physically. Not to mention it's your mom. There were times that I just felt so used and abused I wanted to give up. That's when I would give myself a little break even if it was just taking a walk in the yard and have a good cry. Find some way that you can recharge your batteries. You have to keep your self healthy both mind and body. Take care Jamie....Thoughts and prayers.

Jamie, I understand the anger also. There are times I find myself getting short with my husband over small things. I always feel really bad afterwards. I am sorry that your mother is getting so bad. I hope you find a way to get some rest. You are still in my prayers.

Good morning all,       

 

      Question has anybody noticed the person that has the Hep-c when they get this sick they have a strange oder to them? I don't know if it is from the lactalose or what. Any ideas?

     I also wanted to appoligize for one post I left, I think I was very tired and confused. Not knowing how to forsure to deal with my mom being in this state. I can't quite understand it being a spouse. Only to the point of my partners brain tramua from falling off of our roof. But guess dealing with it being a parent is hard, because they are the ones who made things right. Hope this makes since. She is 63 years old and looks like she is 100. I have a friend here who has help me understand a little more how to deal with her not knowing how to do things. But I do thank you all for your support. Hope you have a great day.

Have a safe and Happy Halloween

Jamie

Hello all,

    Hope everybody has had a wonderful holiday season. Ours has been kinda on a slippery slope with my mom. After my moms 6 day stay in the hospital in Nov. she did pretty well untill about a week ago. She started showing signs of her dementia again, friday we saw her doctor here at home and had blood work done. Her ammonia levels are only at 60, we don't usaly see signs untill they are reaching to the 80s. We have totaly cut red meats from her diet. But she seems to be getting worse faster the usal. She had now lost about 10 lbs, does not want to eat, and just wants to sleep all the time. Her doc. now has taken her off of 3 more of her meds, to see if that will help with her levels. I have noticed when she was in the hospital, the more blood they drew from her see seemed to get a little better. We have her on the same meds and the same time for meds like the hospital did. Now it seems to make no differance. The only thing I see differant is she is not hooked up yo an IV and blood is not being drawn 2 times a day. Oh the good news is now she has stopped smoking. We do make her come out to eat t the table wit the rest of the family.

 Well thats about all for now. Hope everybody has a safe and wonderful new year.

Jamie

Hello Jamie, good to hear from you again. Sorry your mom isn't doing better. When my husband was acting strange and his ammonia levels were down.... he had an infection. Maybe that what is causing your mom's dementia. Check her temp and if it is even slightly elevated from her norm call her doctor. Hope your holidays were good. Thoughts and prayers..........

    Just a quick update, we have had to hospitalize my mom today. Ammonia levels we at 105, she was severally dehydrated, potassium was way down. She has had to start doing neb treatments 4 times a day. And now they are talking about having to do her lactulose every two hours. Mental levels so bad she thought the kitchen was the bathroom. Not able to shower her self or dress her self. We said enough is enough and took her to the ER.... Guess what? they admitted her. go figure. Right now I am just tired as is everybody else in the house.

   But I do hope everybody else is well. And thanks for every thing.

 

Peace,

Jamie

Hello Jamie  about the odor.  I noticed it with my husband also.  A nurse told me that it was ammonia.  When his ammonia starts getting high I give him 2 tbls Lactalose every hour.  It usually takes 3 to 4 hours to start working.  I have managed to keep it under control that way.  The first time I had to deal with high ammonia I couldn't get my husband in the car.  He just didn't want to go to the hospital.  Its understandable since we had been in every other week for 3 months.  I finally called an ambulance.  They said they couldn't make him go unless we called the police and they assessed him to be incompentant.  Well, my husband turned in to hostess with the mostess!!!  Offered them coffe or anything to drink.  Visited with the police like they were old buddies.  To make a long story short they couldn't make him go.  Clearly they knew something was wrong but you cannot force them to go.  That was my first experience with high ammonia.  It took me two days to get him to the hospital that time.  He ended up wearing my bathrobe in to the emergency room.  I didn't care was just glad to get him there. His ammonia level was in the 80's at that time and he doesn't remember anything.  Another time he was hospitalized for dehydration his ammonia level was up to 140 and he was a clear headed as he could be!!  I discussed this with Vanderbilt and they don't take a lot of stock in the ammonia numbers because a lot of hospitals don't get it on ice right a way and the number can be wrong.  So now I just go by the way he acts.  My husband is not on the transplant list yet.   We go to Vanderbilt on 1/15 for two days of tests as an outpatient.  After that the committee meats to determine if he is eligible.  As slow as things are going it will probably be another month for that decision!  My step son wants to persue a living  donor transplant.  Any of you have any experience with that.  We haven't even determined if he is a tissue match yet.  I sure hope so becasue I don't know how much longer he can hold on.  I didn't know it was possible for him to get as thin as he is.  He looks like a skeleton walking around.  He still isn't at the stage where he wants to sleep all the time but I can see that coming.  S

Shelly I envy you being able to open your doors and windows.  We are in East Tn and it was 14 yesterday and 18 today.  Suppose to be in the 60's next week.  I can't wait.  As long as the sun us shinning thats all I need.  Hope the sun is shinning for all of you. 

JoAnn

     Hi!   Everyone, now I know what my husband has been going through.  I am at end stage cirr.  I'm aware that I do not always make sense. I'v gone for my eveluation and have been listed. I gave them a hard time when I was first got confused and refused to go to  the hospital until someone mentioned an ambulance. At that time my ammonia level was 186. They could't figure out why because for the past 20+ years I have been under a Dr. care fore my HB pressure. Blood tests were done every 4 months and my liver function tests were always normal. Six months after being on lactulose  they finally did a biopsy . Don't drink or do any type of drugs other than prescribed. Did'nt have hepatitis (except A when I was a childJ) so they diagnosed me as having cryptogenic liver disease. A  year later am now under the care of a transplant clinic and have been placed very low because of my meld score.Which they said may not change even if I get very ill. I'm doing well but can't sleep. My skin does smell like ammonia at times and my husband tells me so I can take more lactulose. Three weeks ago went for my labs and everything appeared to be normal except still low on platelets. My amonia level has gone down to less than 14.  Well it's 5 am and haven't slept guess I'll go pretend to have slept. Any Questions. Good luck to all of you who are dealing with people like me . I really appreciate everything my husband has done for me.     june

Hi, June!  Thanks for posting.  It really kind of amazes me that with the chronic active hep C, my liver function tests were never exceedingly high and I've never had high ammonia.  Just had a huge cancerous tumor instead, and lost the right lobe of my liver.  I think it is probably preferable to what most of you have been going through, either personally or as a caregiver.  My only complaint now is a sensitive digestive system, since the hernia repair.  I do tire easily, but I've lived with that so long that it seems normal to me.

Jamie, so sorry to hear what you and your mom are going through.  I know it's emotionally exhausting for you.  Please rest when you can.

Hugs,

Connie

Hi Carm, I am sorry that everything is so frustrating for your family at this time. I hope you will get answers very soon. I know how being afraid feels. I feel that way everyday. My husband's condition remains stable, but I am afraid anyday now something horrible will happen. Especially now that he is more often not himself. My prayers will be with you. Hang in there.

Hi, Christiane and welcome to the forum! I'm so sorry to hear about your father, but glad you found us. Hopefully, your dad will be a candidate for transplant and be fine--so have faith! What type of liver disease does your dad have? I have hepatitis C, mild cirrhosis, and developed a huge cancerous liver tumor. Fortunately, I had cancer treatment at Mayo and then surgery to remove that side of my liver, and I'm doing well.

Please come back and let us know how your dad makes out next week with his MELD score.

Hugs,
Connie