end stage liver failure part 2

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jamiesota
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Date Joined May 2007
Total Posts : 50
   Posted 10/16/2007 7:43 AM (GMT -7)   
  I do understand the back to back doc appointments, thats the way they set up my moms since we live almost 4 hours from the transplant center. We just got back last night around 9 and was dead tired and still am today, matter of fact I just woke up from a long nap. You are right when you say it seems like when their toxin levels go up it is like they have Alzheimer's. And act like little children when they don't get what they want. Like my mom keeps a litter box in her room casue one of our cats adopted her and stay with her all the time. I went in the get her laundry and there was no litter in the box, I asked her where it was, she said she used it, don't quite know yet what she did with it since it was a scoople litter. Or her coming out and telling me the cats knocked over her tv. She has a 32 inch tv. So you tell me lol. Oh she does not lile to be told no.
   Anywho like I said we just got back from 2 days of testing. Her MELD score went from a 10 to a 13 in little under a month. But if things keep going the way they are she wont be able to have a liver tansplant She has sever lung problems, they docs could not believe that she was not on more inhalers then she is. She has to go back useing her C pap machine and 100% stop smoking, loose some weight and get out of her room more. That one we have been working on. But if she looses up to 5% more of her lung serfuce she wont be able to have the transplant. So it loose like we could be going for lungs instead of a liver. We have to go back in a couple of weeks to have her nuro testing and EEG or EKG  done. She is at this point on the transplant list, just very low on it.
    We have a wonderful social worker there, she worked with my moms worker here and our room for the 2 nights only cost us 45 out of pocket and we both got a pre-paid food card for the restruant in the hospital. And the amounts we could spend where realy good per meal.
    Connie I am dido with pink grandma, if we where closer I would drive u also. Good luck on your testing. Hugs and prayers always.
    Well since I feel like I just wrote a short story for readers digest, I should close. Oh one more thing, in the gift shop at the hospial they have a t-shirt I want to get, it says ( The ulatament Recyling Organ donation. Please for give my spelling errors.
 
Peace, As always,
Jamie

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 10/16/2007 8:26 PM (GMT -7)   
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?

jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 10/29/2007 7:38 AM (GMT -7)   
Good Morning all,
 
 Butterfly3 no never did find the litter. And I also have a 13 year old daughter believe me when I say they are smarter then you think. And they do get just as worried scared and confused. Even if you don't tell them how bad it is.  Sorry it has been a while since my last post. I have been down with a absest tooth. Plus my mom has been in way out land again. So not much sleep on the home front. I find my self getting angry with her. For stuff I know she cant control. but does not seem to make a differance at the time. We had her in the ER again this weekend her levels were at 88 and we can't seem to keep them down. They have put her back on lactalose 3 times a day. Plus the other meds. She can bearly walk, shakes. I am afraid to leave her alone to find my house burning down. We have all that smoke in the house now are taking the new med Chantex to stop smoking, but when when being forced to, I dont think it works the same LOL.  We have had to hide her meds cause she takes them with out us knowing. Please somebody tell me that I am not loosing it. Everybody else get to leave the  house to do stuff and I am here 24/7 and realy dont know how much more I can take.
 
Peace,
Jamie
 

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 10/29/2007 9:12 AM (GMT -7)   
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.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/29/2007 12:49 PM (GMT -7)   
Jamie, I believe that Hospice has respite services...someone to be there a couple of hours a week so you can get out some.

Hugs,
Connie

butterflyfour
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/29/2007 3:36 PM (GMT -7)   
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.
ButterflyFour.<3*
 
 
 
It's better to cross the line and suffer the consequences than to stare at that line for the rest of your life wondering what awaits beyond it.


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 10/29/2007 3:38 PM (GMT -7)   
Oops, the previous message is from me. My daughter forgot to sign out. Sorry.
Butterflythree
 
There is always hope!


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 10/30/2007 7:19 AM (GMT -7)   

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 skull

Jamie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/30/2007 7:52 PM (GMT -7)   
Jamie, I have read about patients with advanced cirrhosis developing foul smell in their breath and urine, but not body odor. Sorry that I can't help.

Hope you are doing well.
Butterflythree
 
There is always hope!


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 12/29/2007 2:44 PM (GMT -7)   
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

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 12/29/2007 3:36 PM (GMT -7)   
Jamie, I am glad to hear from you. I'm sorry that your mother is not doing well. My husband has not been himself for about two weeks now. I have been trying to figure out what has changed that is causing him to seem so drugged all the time. I can't narrow it down to anything. Hope you have a wonderful New Year also.
Butterflythree
 
There is always hope!


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 12/29/2007 8:31 PM (GMT -7)   
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..........
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.


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/30/2007 11:57 AM (GMT -7)   

Jamiesota, I know exactly how you feel. My mom was so sick and so confused we had to follow her around the house and fix what she did. She would leave water running in the faucets, food cooking on the stove, etc. It was heartbreaking for us all. She had always been such an articulate speaker and at the end she made no sense at all. She too lost weight rapidly and refused to eat most of the time. For us it was probably most sad to watch her cry because she knew she wasn't making sense and doing strange things. I was so sad when the big transition came for her and she slept the majority of the time. I still am grateful that we were able to keep her at home as long as we did. I guess in all truthfulness my father (85 yrs old) deserves all the credit. He took 100% care of her the majority of the time. My mom fought a good fight right up until the end. I was and always will be proud of her. Keep your chin up and remember all the good times you have had with her. That will sustain you during the bad times.

             Shelly


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 1/4/2008 4:53 PM (GMT -7)   
    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

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/4/2008 5:13 PM (GMT -7)   
Jamie, My heart goes out to you and your family. It is so sad to have to see a loved one go through this. I hope that she improves soon.

My prayers will be with you.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/4/2008 5:23 PM (GMT -7)   

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


jamiesota
Regular Member


Date Joined May 2007
Total Posts : 50
   Posted 1/5/2008 10:44 PM (GMT -7)   
 First off I want to thank you all for the wonderfull support you have given and adivce on how to handle things, and push to get what my mom needs. She more then likely no longer on the transplant list, dew to her lungs. Her ammonia levels where at 105 when they addmited her to the hospital now as of this morning she was at 114. She is on IV fluids and is being given tramadoll and morphine for the pain. Lactulose every 2 hours. And now she just sleeps.  They did take her down for a ultersound of her liver today, now we just wait on the results. Think I am going to hit the sheets, tomarrow start another long day. Hope all is well with you all..
 
Jamie eyes

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/6/2008 5:22 AM (GMT -7)   
     yeah 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.   yeah   june

butterflyfour
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 1/6/2008 8:05 AM (GMT -7)   
June, My heart goes out to you for what you are going through dealing with this horrible disease. I am glad that you have your husband to help you. I am sure that your husband is glad to be there for you. When you love someone there is nothing you wouldn't do for them. You will be in my thoughts and prayers.
ButterflyFour.<3*
 
 
 
It's better to cross the line and suffer the consequences than to stare at that line for the rest of your life wondering what awaits beyond it.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/6/2008 9:39 AM (GMT -7)   

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


carm53
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/9/2008 5:48 PM (GMT -7)   
hey guys i realy dont understand doctors sometimes...... as some of you know my grandmas has been in hopeital in an out for past 3 months now.... everytime they let her out she either looses blood and passes out or her ammonia levels hit the sky... last time she was in (last week) it was at a 165!!!!!! any ways there letting her out soon before she even has a liver biopsy witch is scheduled in week and half..... does this make any sence???? i just wish doctors understood what a family goes through when there is no "real answer" to whats going on..... and although bringing a loved one home is nice.. it is also very scary knowing there not 100%.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/9/2008 6:59 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


daddy's georgia girl
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/16/2008 11:32 PM (GMT -7)   
Hello Everyone! My name is Christiane and I just found this forum tonight while researching my father's illness. I don't know what to expect and some guidance would be nice. My father is so young and this just all seems so unfair. He is only 52. We will be finding out his MELD score next week and he is currently on a 90 day reevaluation cycle. He still works but he is weakening and it is obvious. I am very attached to my father, he is the center of my world and this is all so painful to deal with.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2008 12:21 AM (GMT -7)   
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

daddy's georgia girl
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/17/2008 10:54 AM (GMT -7)   
Hello Connie,
My Dad also has Hep C with cirohsis. He was given Hep C by the military back in 1977 and never knew anything about it until just the past few months. They never told him it would remain with him the rest of his life. He was infected while receiving his vaccinations for his move to Germany. A few months after that he fell ill. They military gave him some antibiotics and sent him back into the field. No information on the disease, no further mention of it. We found out thirty years later when his feet started turning purple and swelling and no one knew why. He served for twenty years, including Desert Storm and this is the thanks that he gets. I am very bitter right now. But, I do appreciate the forum. It is a great information source although sometimes a bit depressing. It is hard to read what so many people are going through and realize that we will be traveling the same road soon enough. I do give kudos to all those family members that never give up. I hope that I can be that strong when the time comes. Right now I just cry all the time. Thank you Connie for "listening", it is nice to have someone out there to talk to.
 
Christiane
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