end stage liver disease

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Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 8/30/2005 9:28 PM (GMT -6)   
I have just joined and I am very glad to hear about your mom.

I took my mom to the ER 20 days ago. She is still not home. When I got her to the ER she could not walk, move her hands, talk or anything else. I thought she was dead. Her ammonia was 125 and she had a urinary tractinfection.

My whole life has been turned upside down.

Tiff40

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/31/2005 1:29 AM (GMT -6)   
Welcome, Tiff40
 
I'm so sorry to hear about your mother. You have her in the best place, so that she can get the care she needs.
 
If you have any concerns or questions that we can help you with, or just need to talk, please let us know.
 
God Bless. We'll keep your family in our prayers.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 8/31/2005 8:21 AM (GMT -6)   
Dear Tiff40
How's mom?? So sorry to hear that you're going thru such a hard time. I've been thru that myself with my mom, in the ER, etc. She was totally out of it, all she did was pray. She didn't recognize any of us, etc. After a while her amonia level was brought down, and she finally became herself, but I have to say, it is truly a
rollercoaster. My mom has been in the hospital and rehab since May. It's quite scarey when she gets so bad. Sometimes it helps to know that there's other people going thru the same situation as yourself. I know when I first started to read these messages I couldn't believe other people were experiencing the exact same thing!! I felt like I had support and still do. Well, if you'd like to email me, feel free to do that at
adlady16@hotmail.com. Hope your mom gets bettery soon. Stay strong for her, she needs that.

KS
New Member


Date Joined Aug 2005
Total Posts : 4
   Posted 8/31/2005 12:02 PM (GMT -6)   
Hi I'm new to this. My brother has Hep C. He was hospitalize 2 1/2 years ago with blood collecting in his stomach. His ammonia level was high but I don't remember what the dr said it was.
Just a few weeks ago, he had a blood test - ammonia level was 145.
I'm wondering how long this can go on? He is just skin and bones. He has lost so much weight. He sleeps alot, then the day he seems fine. What can I expect? He lives with me and my family.

K

Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 8/31/2005 8:31 PM (GMT -6)   
adlady16,
Thank you for you kind message. This has been a blessing. As soon as I started reading the messsages I knew it was a good place.
The other evening I had to go over the advanced directives with my mother. We were both in tears. The Dr. came to say that my mother feels better but she isn't getting better. My heart dropped. My mother wouldn't eat for the rest of the day. I can understand her feelings. It is still so hard. They think she may be discharged next Thursday. I'm hoping that she is but I know if she is it all starts again.
I feel very helpless.

adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 9/1/2005 7:33 AM (GMT -6)   
Dear Tiff40 - Believe me, I've been thru a tremendous amount with my mom. No, they won't get better. The best thing is to keep them as healthy & comfortable as possible. It is imperative that your mom takes all her meds and eats the proper foods. She needs to keep her amonia level down. That makes a world of
difference. Has a nutritionist helped you?? Please insist that if your mom doesn't feel well enough or if you feel she shouldn't be discharged, discuss this with her doctor!!! Hospitals are to willing to release patients before they should be and wind up coming right back. sometimes worse than when they left. I've been thru this with my dad and seen this with my mom. She'd be home for a week, her amonia level would sky rocket and she'd go right back into the ER. By the time a doctor would see her and evaluate her, her amonia level would be continuing to rise!!! It's very frustrating for me and family to have to go thru her entire history with the doctors over and over again when we know what's wrong. Please, if you need an invisible
shoulder or to vent, I constantly check my email and will respond immediately. I've been thru alot and maybe there's some advise that I can help you & your mom with. Don't hesitate. I know it's difficult, but stay strong for yourself and your mom and don't forget to eat!!! (We do that sometimes!!)
Hope to hear from you soon. :-)

Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 9/1/2005 6:43 PM (GMT -6)   
Can anyone tell me how they deal with family, work etc. while all of this is going on.  I am a having a hard time at work.  If anyone dare asks me how my mom is doing I break into tears.  My husband and daughter are sad and tired of seeing me sad and tired.  I also feel a lot of hostility toward some members of my family.  I am the only one here with my mom really dealing with all of the issues that arise everyday.
How do you keep from crying constantly and being really pissed off!  I feel as if some days I am going to break and other days I feel very strong physically but pooped mentally. confused

adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 9/2/2005 7:17 AM (GMT -6)   
Dear Tiff40 - Sorry to hear that you're going thru a tough time. When my mom was not doing well and in the ER, my husband was also there with me and for me. Fortunately, he loves my mom as much as I do and sees her as his own mom. It was tearing him up to see her in that condition. I new I had to stay strong because I know that if I began to lose it or cry, I would never stop. I have 3 children, ages 18, 16 & 12 and I did not bring them with me. It would devastate them to see her like that. Does your husband go with you to visit and help you out? It also helps to have family and friends that stand by your side. It's not easy at all but all of this helps. How is mom? Is she still in the hospital??
As you know, emotions are running high right now. I've learned to think twice before I let anything slip out
of my mouth that I'll regret later.
Unfortunately my home computer is being repaired. I will get it back Tues 9/6. So today is that last day that I'll be able to check my emails in work (9/2). If I don't respond back, that's the reason why.
I'll be thinking of you and your mom and hoping everything stays well. Hang in there and stay strong.
You can do it!

Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 9/2/2005 8:47 PM (GMT -6)   

adlady16

Thank you for your encouragement.  My husband and daughter have really helped me get through this.  My problem is the rest of my immediate family.  My father and sister seem to think that my mother caused all of her problems herself.  Isn't it a shame that even when someone is dying they can't show compassion.  When I took my mom to the Er they thought she was going to die.  As soon as she opened her eyes and could speak they both left.  And they haven't been back.

I understand what you mean about not saying what you will regret later.  I know by saying anything it will start a fight.  So I just say nothing.  I have had to do everything by myself since they left.  I'm not feeling sorry for myself, it is what it is.  But I do feel like they don't care about the toll this will take on me and my family.

Have you had any experiences with going on vacation or taking a trip with your ill mom?  I was talking to mine about going on a trip after she gets out of the rehab (physical therapy).  If her ammonia levels go up will it fly up in one or two days?  I would really like to take her some nice places while she is feeling better.

 

 


adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 9/3/2005 7:17 PM (GMT -6)   
Dear Tiff40 - I am at my sister in laws house
(replace this text with your code)
now and I checked my email and saw your response, so here I am. What is your Mom's amonia level? I would be hesitant about taking her any where on a trip right now. What if her amonia level spikes? Do they check her amonia level
often?? How is mom doing? Is she on a special diet? Stay strong. It sounds like you're doing a good job. It's very hard to see someone you love dearly go thru such a terrible time. But I look at it this way. My mom and day gave me a wonderful childhood. Unfortunately, my dad passed away in March. He was diabetic which it started to affect all of his major organs. He died at home of a heart attack in my mom's arms. But I look at it this way. I will try everything in my power to make them as comfortable as possible and get them everything they need medically and at least I know that in the end, I tried. That's what's important. I can't tell you what to do, but that's what I've done. I will check my email again tomorrow ( Sunday) at my sister in law's house, since my computer is still at Comp USA waiting for a tech to make it better. Home all is well, or at least stable at this time. I will email you again after I check your response. Be strong.
Debbie

Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 9/4/2005 6:58 PM (GMT -6)   
adlady16
 
I am not sure what my mother's amonia level is at this time.  I am going to find out tomorrow or Tuesday.  She seems like she is doing much better, I definitely know it is much lower than it was when we went to the er.  Although now she seems to be getting a little agitated at different things.  I noticed in the rehab she has her phone in the drawer sometimes.  I think it is there so she won't hear the phone.  I go to see her everyday.  I'm really happy to get to spend these moments with her.
You are right about going away on vacation.  It may notbe a good idea.  Maybe we will be able to do some short overnight trips.  I want her to feel as comfortable as she can.
They have changed her eating a couple of times.  First she had protein and sodium restrictions.  Then a few days later they said that she wasn't getting enough protein and that she only needed to be on a sodium restriction.  My mother is so tiny now.  Once she was back in the hospital her feet were swollen again.  Today I was helping her change and I noticed that her thighs were bigger.  At first I thought it was from eating but when I really looked at them I thought that maybe they were swollen also.  I am going to ask the Dr. when I see him tomorrow.  It' s awful to see the feet swelling.
Thanks for all your encouragement.  Hopefully this will be a good week and my mother will get discharged this Thursday.

adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 9/6/2005 7:18 AM (GMT -6)   
Dear Tiff40

It's good to hear that your Mom is feeling better. I noticed also, that when my Mom's amonia level was higher than normal, she would also get agitated at little things and complain about trivial things too which is not her nature. That could be a sign for you to watch out for. As far as her phone, see if you can lower the ring volume so it won't bother her as much. Remind her that all those calls are from people who care about her. Also, the swelling. Is she also on fluid restriction? Is she taking water pills. It took a while for the doctors to get a good solution for my mom's swelling in her legs also. They had to keep changing dosage, etc. Don't ever feel like you're bothering the doctors or nurses by asking questions. This is your mom. You need to watch out for her well being. Be sure that they keep an eye on her amonia level. Well, keep in touch and let me know how you're making out, OK? Supposingly I get my computer home today (yea!!) Take care, talk to you soon.

Deb

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/6/2005 7:42 PM (GMT -6)   

Tiff 40 and adlady16,

Glad to see that you found each other.

If there are any questions that I can try to answer, please let me know.

God Bless

 


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/6/2005 8:00 PM (GMT -6)   

Welcome KS,

Jennifer moved your post to a new thread.  I'll try to answer your questions there.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Tiff40
New Member


Date Joined Aug 2005
Total Posts : 6
   Posted 9/17/2005 10:10 PM (GMT -6)   
adlady16 
 
How is everything going.  My mom has been home for a little over a week.  It's amazing how different she acts when her ammonia level is under control.  I'm hoping that it will stay down.  I am really enjoying having her at the house with my family. 
 
The physical therapist comes every other day to help her exercise.  The swelling in her feet and ankles have started to go down.  She is starting to get a little agitated with things.  Noise seems to bother her along with sudden movements.
 
Now that she is home is there anything I should look out for?
 
Thanks for really helping me through such a terrible time.  I know the same may come again but I really feel I would be able to get through it.
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