Is it ESLD?????

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/13/2010 2:44 AM (GMT -7)   
One thing that has puzzled me over the last few years is Why has no one ever came out and said your mother has end stage liver disease. Does that mean she does not have it because no one has said it? am i pressuming the worst or just being realistic. I have read again the stages of liver disease and yes she seems to have it all. sometimes my mum has a horrible odour about her, I am not sure if it is on her skin or breath or both. I have tried to ask about it, nurses look at me oddly. I have even been asked Has your mum had an accident? It is not that kind of smell, the smell is foul, i can smell it when i walk in the room it makes me feel sick. When she is like that i even can smell the odour on me when i get home, i have to shower and change clothes. I am not imagining things, no one else notices. Not once Has anyone given her advice on diet, sodium levels, meld scores it has never been mentioned. When youlook at her her skin is very pigmented, really dark in places and now areas where the skin has lost its pigmentation. She has no muscle mass at all, just swollen at the belly. Her hands shake all the time and her eyes twitch. she has this incredible craving for chocolate.
Maybe if she went to see the heptologist when she gets out, they would be giving her the advice, but she never goes. She is supposed to be going for bone scan to determine how bad her osteoporosis is, stroke clinic, epilepsy clinic but she never goes anywhere. she gets out, drinks again until she is admitted again through another fall or seizuire.
so although the consultant has spoken to me with regards of her hip and her mrsa no one tells me how she really  is i just have to assume...my mum is in denial of what is wrong with her she is in denial of everything

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/13/2010 10:27 AM (GMT -7)   
Allie, Sadly the Dr's may not be discussing ESLD as she is actively drinking and this may have been told to her but she has not addressed it so they are only dealing with whatever medical issue that brings her to the hospital ie falls cinfusion etc. I know the odor you are talking about, it is a combination of ammonia levels and also acites seeming through soft tissue. Doug had that issue the last year he was alive he would shower 2x a day to try to help it, we switched soap to a liquid body wash with alot of natural indgredients. Deodorant soaps seemed to make it worse. My cat would actually alert us to sudden changes in smell and sure enough it was always a rise in sugar levels or ammonia levels, I had her declared a helper animal so we could keep her in our no pet apartment. It is common for people with liver failure to have temps lower than normal Dougs normal became 94 so when it would rise to 97 or above he would sweat more and the odor became more noticable. This was all things I asked Dr about my OCD didnt allow me to be in the dark about anything. I would spend alot of time talking to one Dr that did more research than patient contact and he was a wealth of info, he also said he learned from patients families some of these things that are sometimes different for each individual. I hope I have helped some in understanding. I wish you all the best with your mum.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 12:26 PM (GMT -7)   

Allie, if you can get a Health Care Surrogacy or Power of Attorney, you can request her medical records.  I learn more from my medical records than I do from anything that is ever told to me.  When I don't see my questions answered in the medical reports, then I ask.  For example, I had to ask what genotype my hep C is, as nobody ever told me nor was it mentioned in the records (it's 1a.) 

There is a foul or sweetish odor on the breath of end-stage patients, known as fetor hepaticus.  There is also encephalapothy, muscle wasting, inability to manufacture platelets, and various other symptoms of end-stage patients.  Some of these may improve when your mom is in the hospital and having the symptoms managed (such as with monitored Lactulose.)  This doesn't mean that the disease isn't progressing, just that the symptoms are better managed.

Have they gotten the infection under control?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/14/2010 2:11 AM (GMT -7)   
Everything you all say is right. But sadly i don't have much of a relaationship with my mum and that really affects everything. Several times when she has been in the hospital she has told the doctors not to tell me anything.She hates me talking to doctors, she comes out with "you have to know everything, you think you know it all and so on". Most times i come away from visitng her I have a heavy heart.

21/2 years ago I spoke to the heptologist who told her and me if she continues to drink she will die. He told me at that time she only had 16% of her liver functioning, she was unstable and was brought in with the usual burst varices, encelepathy, portal hypertension, ascites, jaundice, pneumonia, he said then she might not pull through but was very firm and gave her three months if she continued to drink. She has been under many consultants since then but not in that department. everytime she had to go outpatient she would refuse to go, be drunk, in hopsital or said she had went. since then you know the rest strokes, seizures, c dif, fractured spine, now broken hip and mrsa.my mum talks to me about many thing apart from what is going wrong with her. she used to be well dressed, loved taking care of her self, now even in hospital she lies there with dried blood and faeces under her nails. out of hospital she can wear the same clothes for days, smell her bedroom until recently had blood, faeces stains over her bed, carpet and walls. we replaced all that but it is getting bad as ever. she was 62 past and forgot to claim for her state pension, her finances were in a mess. she has money in the bank but it is quickly going. Before her fall there have been times in the house when she cannot function, walk or stand properly especially when she has had a drink. when she drinks there has been times whgere she has wet herself and lies in it, she also bleeds from her nose and blood is everywhere. If i was to try and help her she would refuse, and say she was capable of looking after herself!!!
I have tried to educate myself by looking at her symptoms and listening to doctors, I know in my heart Rick that she is slowly dying in front of me. In the hopsital they are dealing with the issues that she came in with, but they do not take everything else into account when you ask how she is. Ther has been a few times which I have spoken to a nurse who understood everything, who said I was being very realistic of what is happening to her.
I wish i could talk to my mum about what is happening to her, try and help her through this by getting herself educated a bit on looking after herself properly, eating properly and so on. I still hurt deep inside for the things that has happened, for the neglect of my gran I cannot seem to shake these feelings and they get me down. I look at all these posts about carers and sufferers from this terrible disease, i see the lengths people go to try and get better and I fell at this end my hands are tied and I cannot do anything but go there and watch. I dont want to go against her wishes, as she would be mad with me.I have had enough fighting. Does my mum have to know I am getting Power of Attorney, cause her partner will think i am just after her money i am frightened to go down that route. Also does my mum have to be proved incapable for me to get this, because she has times when she really is clear headed and no one would find anything wrong with her. Connie you are quite right getting access to your own medical records, that way you can fight this as best you can. But even if i knew it all, what good would it do, cause I cant do anything about it.
I am a grown woman of 44, married with two kids 20 and 13, why do I fell like a helpless wee girl as far as my mum is concerned.When i have needed her most these last 15 years she has not been there, I feel even now she does not know or understand me, she tries at times to reach out but I cant and that really upsets me. I have went on a bit as usual

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/14/2010 2:15 AM (GMT -7)   
shadow ghost and connie thanks for telling me about the smell, i thought i was going mad. I wish i could advise my mum of it but she would not like it if i mentioned it....obviously...that was a bit stupid, but really i cant discuss anything with her .Rick thanks for your kind comments everyone does well listening to me going on about the same things

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/14/2010 1:18 PM (GMT -7)   

Allie, your mum is in major denial.  She doesn't want to acknowledge that the drinking has caused this and she really doesn't want to stop.  If your finding out just how bad off she is is for your own information, fine.  But also know that there really isn't a thing you can do.  Just reread the long post you just wrote and I think you can see how bad things are without having to read any medical records.  Because she is not willing to admit the alcohol problem or ask for help, all the docs can do is treat the symptoms.

I believe that you would need to get her signature to get Power of Attorney and she would also have to sign legal paperwork to assign you Medical Surrogacy.  If you want to see about having her labeled mentally incapable of making decisions or caring for herself, you need to consult with a lawyer.  Over here, they don't charge for a consult.  I know the laws are different overseas, which is why I suggest meeting with an attorney.  Also, I wouldn't want to give you wrong information, even over here.

If she is released home, you could try to get home health care for her.  Then there would at least be someone checking up on her regularly.

Rick, you've come a long way in 1 1/2 years, by the grace of God and your own willingness and humility.

Hugs,

Connie

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/15/2010 1:42 AM (GMT -7)   
Yesterday was not a good day. I did read back my post and cannot believe how much i have went on and opened my heart to you all. sometimes i come across woe is me, and that is not what intend.
Connie you have been so good listening with all your advice,sometimes i feel there is that much happening in my life i have to stop and catch my breath. Deep down my mum is in this bad place, she is is total denial, i get so frustrated at not being able to change things, although in my heart i know it is her that need to do the changing. I have arranged IRIS (quick response home care team ) and other homecare, but as soon as she is home she sends them packing. I will have to learn to sit back and let her get on with it.
Rick you are marvelous,you have been through so much yourself and you still continue to help when asked. It is good to hear from one who has suffered, and the pain they felt it helps me to understand why she pushes me away.
thank god for you both

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/15/2010 10:32 AM (GMT -7)   

Allie, this is a safe place to vent and we all need to do that from time to time.  In reading back what you wrote, it is easy to see how much denial your mum is in and how much the whole situation has taken over your life.  One thing I learned in AA is that I can't control other people.  I can only control my reaction to them.  I also went to Codepency meetings and learned how to detach with love, and not get sucked into a toxic relationship.  It's necessary to learn these things in order to take care of one's self.  If you believe in prayer, try praying for the things you wish for her, such as sobriety and better health.  It may not help her, but it will do wonders for YOU.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/15/2010 4:16 PM (GMT -7)   
my mum has a provisional date for getting out the hospital. They said if all goes well she should get out Feb 3, she will be finished her antibiotics by then and doctors are pleased that it looks as if the infection has been controlled. My mum is desperate to get out, she is so excited at the thought of it. That would be 9/10 weeks this time, the longest yet.
I will pray for her, i think it will need a miracle but sometimes miracles do happen. keep you posted

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/15/2010 4:32 PM (GMT -7)   

I'm glad to hear that she will be in hospital 2 more weeks.  The longer she is without alcohol, the better her chances of staying away from it when she gets out.  But she also has to have the desire and willingness to stay sober, and I'm not sure she has those.  A miracle is, indeed, needed.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 5:53 PM (GMT -7)
There are a total of 2,733,258 posts in 301,097 threads.
View Active Threads


Who's Online
This forum has 151238 registered members. Please welcome our newest member, ejc61.
318 Guest(s), 17 Registered Member(s) are currently online.  Details
martha, bluelyme, MustangSally52, Lymepilot, Artist Mark, Lilyblues22, NiceGuyEddie, Scaredy Cat, 142, jdm99, jabele, ChickNorris, wearyRAsufferer, k07, Tall Allen, julymorning, Graytech


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer