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Mrsfox
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/16/2009 6:49 PM (GMT -7)   
I have looked all over and don't know who to talk to or where to go. My mom has cirrhosis and I have been her caregiver for about a week now. When she got out of the hospital she was happy and laughing and in a weeks time has gone from good to awful. She is going to the drs on wed. but she is in so much pain. On top of this i have three small children, a husband and a house to take care of as well. I feel soo overwhlemed. I'm trying to get thigns taken care of. She is giving POA to me and we a re drawing up a will for her. I just don't know what to do, how to feel. She was in the hospital for 9 days. She went in because her stomach was soo swollen. They finally got the fluid to go away, but the pain just is to much for her. I just don't know what to expect. She hasnt gotten the jaundice yet. But everything else is there....her biggest thing right now is the itching. And when she does that she gets little sores everywhere that bleed. And due to some of the meds she is on they cause her to bleed alot.  She is stay with me becasue she was living at her job, which was taking care of an elderly women. I have gotten her to agree that she can no longer do that. And she is only 61 so finding her somewhere to live isnt very easy. So anyone that could help, give advice...or anything I truely appreciate it. Thank you.
mad  

realwoman
New Member


Date Joined Oct 2008
Total Posts : 12
   Posted 1/16/2009 9:39 PM (GMT -7)   
I To have looked for someone to talk to I lost my husband June 17 we had no kids but he had adaughter who turned evil once my husband died it was three months before they finallytold us he had cirrhosis he never drank or smoked he worked every day from december 2007 till feb they got 25 liters of fluid from him I feel knumb most of the time this christmas was very lonely also the second of january would of been our 14 aniversy it is so hard to go to the grave site I went through all that you are going through right now except I would give anything if he was still here I try yo keep myself busy of course when I go home my house is pretty empty and that is when I sit around thinking and crying even wishing it was me instead of him my husband built my home that is why sometimes it is so hard to come home I would like to give you some advise but can;t I have been trying to find someone to talk to that is going through what I am . Italk to people at work but it is hard say everything I would like to say because they havent lost there husband my best friend I could ever have so if anyone could help me get through this or just talk to me would help

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/16/2009 9:40 PM (GMT -7)   

Hello, Mrs. Fox.  I am so sorry about your mom.  It is good that you are getting Power of Attorney, but also be sure to get a Medical Surrogacy.  That is often in the forms for a Living Will.  You need to find out what your mom's wishes are while she is still cognizant.

When is her next doctor appt.?  Is she seeing a hepatologist?  You need to find out exactly where she stands medically.  Has she applied for SSI/SSD?  If not, she should do so, or you can do the paperwork for her.  She also needs to apply for Medicaid, if she is financially eligible.  They could pay for a nursing home or perhaps assisted living, if that is necessary.

Read some of the older posts here and you will get an idea of what to expect and what you should be doing.  If you mom's doctor does not think she has much time left, you can get Hospice involved.

I know we can be of great support to you, and hopefully be some help as for as information.


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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/16/2009 9:44 PM (GMT -7)   

Realwoman, welcome to the forum.  I am so very sorry for your loss.  There is such a thing as non-alcoholic liver disease and cirrhosis.  I know there are women here who have lost their husbands to liver disease, one being my co-moderator, PinkGrandma.  I know these women can be great support for you, as they have been through the exact same thing.

Hang in there!


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/17/2009 1:00 PM (GMT -7)   
Mrs Fox, Welcome to the forum. I am so sorry that your mother is dealing with this disease. You have come to a great place for support. There are many caring and knowledgable people here available to give advice and support. It may be the cirrhosis itself and not the medications your mother is taking casing her to bleed easily. That is one of the complications of cirrhosis. It causes the blood not to clot as quickly. Try to gain as much knowledge as you can about the disease. Knowledge can be very helpful when dealing with this disease. You will be in my thoughts and prayers.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/17/2009 1:04 PM (GMT -7)   
Realwoman, I wanted to welcome you to the forum also. I can only imagine the loneliness and emptiness you are experiencing right now. I wish there was something I could say to make you feel better. There are people here that have been through what you are going through. I know that they could be a lot of help to you. I hope you decide to hang around. It really helps being able to talk with people who have been through or are going through what you are. I'll be praying for you.
Butterflythree
 
There is always hope!


realwoman
New Member


Date Joined Oct 2008
Total Posts : 12
   Posted 1/17/2009 8:21 PM (GMT -7)   
thank you all for welcoming me it does help to talk to someone who has been through what I have there is a emptiness and loneliness that I know I will never fill but talking to nice and understanding people like you helps thanks so much

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2009 8:36 PM (GMT -7)   
Realwoman, it's generally slow here on the weekend, but keep coming back and others will soon see your postings.  wink
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


realwoman
New Member


Date Joined Oct 2008
Total Posts : 12
   Posted 1/18/2009 10:37 AM (GMT -7)   
Hello everyone thanks again for all your thoughts and prayers they are greatly app- the weather is pretty bad here so I will have to get back in touch with you all next weekend because when it is bad I stay at work so I wont have to worry about getting there I figure I stress enough with out adding more you all have a good week keep in touch keep me in your prayers and I will keep all of you in my prayers

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/18/2009 1:26 PM (GMT -7)   
Realwoman, be careful driving.

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


Sad Daughter
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/19/2009 2:38 PM (GMT -7)   

My mother had the same problem and they gave her Nexium.  The fluid causes gas to build up in her digestive track.  Once she was on the nexium she stopped having pain.  You can get any over the counter gas pill until you can get the doctor to perscribe something for her.  Just a word of advise Nexium is $400.00 a month and a lot of insurance companies will not pay for it. 

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/20/2009 2:58 PM (GMT -7)   
Hello Realwoman and Mrs Fox and welcome to HealingWell. 
 
Mrs Fox,  do read over our older posts as Connie already suggested.......there's a lot of good educational information in them.  
 
Realwoman I am sorry for your loss.   I do know how devasted you must be.  My email is in my profile and if you'd like .....you can email me anytime.  I've walked in your shoes......but I survived it and so can you.........
 
Thoughts and prayers for both of you....
 
 
 
 
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.


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 1/21/2009 7:33 PM (GMT -7)   

Dear Sad Daughter,

Thanks for your noting that pain can be caused by gas.   My friend often winces when she moves.   I know she has back pain but it never occurred to me that it could be gas related.   I'm trying to understand as much as I can about what is happening to her and posts like yours help me.   Thank you.        Joan  


withoutears84
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/24/2009 12:16 PM (GMT -7)   
Hi, I am new here, but I am not new to these diseases, the meds, and the roller coaster of pain and tears. Mrs Fox, my heart goes out to you. I was diagnosed 7 yrs ago with Hep C, and I also am in stage 4 of Cirhossis of liver. Ive been thru the treatments, and none worked. Your mom sounds like she is very depressed and and that is very understandable. But i know this doesnt make it easier on you and your family. I am waiting for a liver transplant. But i guess the biggest thing i can say to you and your mom is don't give up, sometimes it is so hard jus to get out of bed to endure another day. But smell a flower, smile , and feel blessed in what God has given all of you. And fight like you never fought before. I will pray for all of you. Theresa

withoutears84
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/24/2009 12:26 PM (GMT -7)   
Hi, its me again. I have a few questions, I had a endoscopy done and they said I have vericose veins around my esophogus, and my liver is enlarged and pushing against my stomach. I do have Hep C and cirrohsis of liver(stage 4). I get routine ultrasounds and bloodwork done every 6 months. they are jus waiting till I get a lesion or cancer on my liver before I get a transplant. But this Bloating that you talk about is new. Its been about 2 months now that iv been feeling this. Feels like im always full. The dr put me on like a anti gas med but this is still so uncomfortable. I also have diabetes, which i take meds and insulin, high blood pressure, and meds for depression. So anyway i guess my question is does everyone get this bloated belly? Theresa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/24/2009 1:49 PM (GMT -7)   

WithoutTears, you may have ascites (fluid in the belly), which most of us with cirrhosis have.  It is very uncomfortable and I had a hard time finding clothes to wear.  I had to get large tunic-type tops and stretchy bottoms to be at all comfortable.  Are you taking any diuretics?  If not, ask your hepatologist about them.  If you have cirrhosis, you have lesions, or scarring.  I doubt they are waiting for you to get cancer before listing you for a transplant.  The criteria used is the MELD score, although there are sometimes extenuating circumstances that will override the MELD.  Did they mention banding the varices (varicosities in your esophagus?)  If those bleed, you could be faced with a life-threatening situation.

Another cause of bloating is constipation.  I personally need to have a BM every day or become distended and uncomfortable.  I was prescribed Miralax for this, but also use cascara sagrada, an herbal laxative.  Lots of fresh fruits and fiber help, too.  I ate about a pound of grapes the other day and I sure didn't need a laxative!  smilewinkgrin   And finally, gas can increase bloatedness. 

Depression meds usually do cause weight gain and sometimes it shows up most in the stomach.

Hope this helps.


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

Post Edited (hep93) : 1/24/2009 1:53:10 PM (GMT-7)


NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 1/24/2009 11:36 PM (GMT -7)   
Realwoman,

Hi, I haven't posted in a while. I too lost my dear wife on November 21, 2008 to Cirrhosis from Non Alcoholic Fatty Liver Disease.

I know the feeling of loneliness and being overwhelmed. We were married 23 1/2 years and have a wonderful 10 year old son. It is a real struggle to try to keep strong for his sake and get him through the loss of his mom. All I can say is that is has been over 9 weeks now since I lost her, but the pain seems to be getting worse. I am a man of faith so I know that god took my wife home to spare her the pain and suffering that she was going through, but I can't help but wonder why... such a sweet wonderful woman, devoted wife and mother who lived for her family had to go. I love her so much, and will never get over her loss.

I understand that it is very difficult to talk to anyone, when they haven't had the same kind of loss, my friends, family,pastor, and church family have been very supportive... but it is hard when their spouse is there with them to talk about everything. I feel like I am being a burden to them when I do start talking about my feelings as I know that they are saddened and depressed from it.

I pray several times a day that god will give me strength to get through this, and so far I have survived. I know that I will know the answer one day. I will keep you in my prayers as well, I don't know if I can be of any help, but I am sure willing to listen anytime. We all have to stick together and get each other through this with god's help.

God bless,

anndalena
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/25/2009 2:53 AM (GMT -7)   
Hi, I am new and am searching for info pertaining to my Dad. He has been a cancer patient and now has cirrhosis. He was initially diagnosed with chronic lymphacitic leukemia (CLL) and has been treated (chemo) effectively for 6 years. Recently his legs and ankles have become swollen and then 3 weeks later his abdominal area became distended. After tests they said he has cirrhosis of the liver. No history of alcohol, hepatitis ect. His CLL is in remission but I wonder if his cirrhosis is a by product of the chemo. In any event, does anyone know how they treat chrrhosis. He obviously is not a transplant candidate and is 78 years old and now very fraile. It is hard to see him so miserable. Any info would be appreciated, thanks for listening.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/25/2009 7:55 AM (GMT -7)   
Hi anndalena and welcome to HealingWell.  So sorry that your father has been through so much.  Not sure why he developed cirrohosis but for some people there is no explanation.   Maybe his cancer had something to do with it.   
 
With new members we always ask them to start a brand new thread so that they don't get missed by our other members.  It's easy to miss you when you post a reply to a different thread.
 
Sorry I could not be of more help.........
 
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.


anndalena
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/25/2009 9:08 AM (GMT -7)   
OOPS! Sorry, I need to learn more about how this works ect. I will start a new thread (when I figure out how) blush

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/25/2009 9:36 AM (GMT -7)   
anndalena , There's no need to be sorry.   Just hit the New Topic button instead of the reply button.......Give a new title that pertains to your situation or question........take care..
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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/25/2009 11:21 AM (GMT -7)   
Withouttears, Welcome to the forum. People with cirrhosis caused from hep C are at a high risk of developing liver cancer. That is why they watch for lesions of the liver. But I agree with Connie. They don't wait for liver cancer to develop before listing a person. The MELD score is determined by your blood work. There is a calulation done using your INR, creatinine, and bilirubin. Like Connie said they do take other things into consideration and adjust the MELD score at times. Take care. I am glad you found us.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/25/2009 12:57 PM (GMT -7)   

Andalena, welcome.  I hope you will start an introductory thread as suggested by my co-moderator.  However, I just briefly wanted to tell you that there really is no treatment for cirrhosis and it is incurable at this time.  The best one can do is keep a very healthy diet (no red meat, fresh fruits and veggies, and absolutely no alcohol.)

Hope you will stick around and post more.

NC, I'm so sorry you are still in so much pain from the loss of your wife, though I think that is very normal.  I want to suggest that you search for a bereavement support group in your community.  Hospitals sometimes have them.  You can also look in your yellow pages under support groups or social services.  Your church may also know of something like that, or be willing to start a group if there are many members in your church.



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


anndalena
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/25/2009 1:19 PM (GMT -7)   
Thanks for your help pink grandma, I hope I started a new thread the right way, let me know if I need to change or do something else. Thanks again for your help.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/25/2009 3:41 PM (GMT -7)   
NC, Just wanted you to know that my thoughts and prayers are still with you. I am so sorry that you are hurting so deeply.
Butterflythree
 
There is always hope!

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