end stage liver disease

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DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/22/2005 5:58 PM (GMT -6)   

I'm sorry to hear that, Lyd.

If you're worried (silly comment, of course you're worried) you can always call hospice and have one of the nurses come check on your mom. Or call her doctor and get some advice.

I remember being so tired that I didn't know which way was up. Do you have help, so you can maybe put your feet up or get out for a few minutes to clear your head?  The hospice should offer some kind of respite care, where you get a break to regroup.

Are YOU eating? taking care of yourself? There were days that I couldn't recall the last meal I had. That was usually followed by a near-collapse from lack of energy.

I'll keep in touch, and I'm usually around somewhere if you need to talk.

 


DJ


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/23/2005 12:56 AM (GMT -6)   
DJ, I just wanted to thank you for all the information.  Lyd, the advice to take good care of you is important.  I know how hard this must be for you.
 
I was diagnosed with hep C in '93 and was recently found to have liver cancer.  I tried to calculate my MELD score, but don't have the INR (wasn't done.)  I will be seeing GI docs for the first time about the CA next Tues., but I know the prognosis is not good...and am interested in transplant info and ESLD, etc.
 
If anyone here--or lurking--has hep C and liver cancer, please let me know what is being done for you, how you are doing, etc.
 
Thanks!
DD

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/23/2005 1:16 AM (GMT -6)   
Hi, DD.

We found out in May 2004, while Mark was being evaluated for transplant, that he had a lesion on his liver. After transplant, the surgeon told me that he had more than one tumor, but it hadn't metastasized, so the transplant took care of the cancer.

Treatment for cancer depends greatly on the type of cancer, whether it started in the liver, and whether it's spread beyond the liver. Mark was too ill, when the lesion was discovered, to try treating it. So, I really don't know much about liver cancer treatment.

If you have specific questions about transplant or ESLD, I'll be happy to try to help.

I do recommend that you make sure the doctors understand that you want to start evaluation for transplant as soon as possible. It takes weeks to go through all of the testing.

Let me know if I can help with anything.
DJ


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/23/2005 5:04 PM (GMT -6)   
DJ, thank you for the info and support.  As far as we know at this point, the tumor originated within the liver and has not metastasized.  It is large (11.7 cm or approx. 4.5 inches.)  There are also several small cysts that could not be evaluated by CT with contrast, so the radiologist recommended an MRI.  However, my doctor has suggested I wait until after I see GI on Tues. to find out what they want to do.
 
I will keep you posted.  So glad that Mark is doing well after all he has been through.
 
DD

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/23/2005 5:05 PM (GMT -6)   
Thanks, DD. Glad I could be of some help.

I'll keep you in my thoughts - nothing but good wishes.
DJ


Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 8/1/2005 12:23 PM (GMT -6)   

Well, I just wanted to let you know that my mom passed away Saturday, July 23, 2005. 

She was very sick and she was not herself anymore.  I am at peace because I know that she is resting now and is no longer in pain.  She was ready and wanted the torture to end.  I miss her greatly and don't know how I am going to live without my mom, but I know that she is in a better place. 

Thanks for the support and the words of advise.

Lydia


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/1/2005 1:30 PM (GMT -6)   
Lyd,
 
I am so sorry to hear about your mother.  My prayers are with you and your family.  I know this is a difficult time for you. We lost Mark's mom in May to lung cancer.
 
God bless you and your family.
 
Julie
DJ


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/1/2005 10:54 PM (GMT -6)   
Lydia, I am so sorry to hear of your mother's passing.  As you said, she is now at peace.   I hope you have the support of family and friends to get through this rough time.
 
I haven't been able to get back here.  Not much has happened, regarding my hep c-induced liver cancer.  However, I did meet with a GI doc and was impressed because he admitted to not knowing what step to take next.  He wanted to consult with a hepatologist who is Mayo trained and has more experience in this area.  He then called me back the next day (I was impressed again), and said they want me to have a liver MRI with a special contrast medium, as well as a brain and bone CT.  3 scans in all.  I have to go back to see him on Wed. to have everything explained, although obviously they are ruling out metastasis before proceeding with any treatment or having me evaluated for transplant.  I am feeling okay, but extremely fatigued all the time.
 
I'll try to come back with updates.  Perhaps it will be of informational help to someone else going through this.
 

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/1/2005 10:57 PM (GMT -6)   
hep93,

Come back to talk, as well. Even if it's just about how great/crappy the weather is today. We're down under 110 here - yippee!!!

I'll hold positive thoughts.
DJ


Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 8/2/2005 9:04 AM (GMT -6)   
thanks for the words!!!

Last night was a really hard night for me. I missed my mom
terribly. It feels so weired not having her around. I use to talk to her
everyday. A day never went by without talking to her. I use to go visit her at least 4 times a week. Now I don't have her and my life feels empty.
What keeps me going is my son and my husband. It is hard because my husband works evenings and I work mornings so we don't see each other all week. So my afternoons are dedicated to my son.

DD, I hope you feel better and stay strong. My mom did not fight her hepC battle and she let go to soon. Take control of your illness, don't let your illness take control of you.

Lyd

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/8/2005 6:21 PM (GMT -6)   

Lyd,

Just wanted to ask how you're doing and let you know that we're thinking about you.

Please message if you need to talk.

 


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.

jlm
New Member


Date Joined Aug 2005
Total Posts : 4
   Posted 8/10/2005 8:52 AM (GMT -6)   
Thanks Lyd, Desert Jules, and Hep93 for your posts. My life partner Bryant was hospitalized for esophageal varices and bleeding June 28th. The varices stopped bleeding by itself and Bryant seemed stronger for one week after getting out of hospital. But he has had two parencenthesis since then and one more endoscopy dealing with other at risk varices. This last week he has really gone downhill - terrible leg cramps, confusion, loss of motor coordination, and some bouts of talking gibberish. I have treated with the lactulose, watched his diet, seen his primary care physician and today (if we make it the GI specialist). He knows my name, knows his name and was able to get in shower to wash up, but seems really confused and has lost so much body mass. I really want the old grumpy Bryant back but feel very doubtful. and this Forum is saving my butt . . . .

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/10/2005 4:29 PM (GMT -6)   

Welcome, jlm.  I'm glad we're here for you, but I am so sorry that you need us.

 

It definitely sounds like his ammonia is very high.  Just remember, he can't overdose on lactulose. [When Mark was in the coma, they gave him lactulose enemas to try and bring him around.]
 
I will keep you both in my prayers.  Let us know how the GI appointment goes.  And, please, feel free to share anything that's on your mind.  If we don't have the answers, we can (hopefully) point you in the right direction.
 
Don't forget to take care of you -
 
God bless you and keep you strong.
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.

jlm
New Member


Date Joined Aug 2005
Total Posts : 4
   Posted 8/10/2005 8:51 PM (GMT -6)   
Bryant is doing better but this is the end - only supportive care from here on in. I will talk to his son and get some decisions in writing.
Doctor said no transplants for alcohol related cirrohsis unless he has not been drinking for a number of years and shows some long term
evidence of lifestyle change and willingness to follow directions. So I guess if he went into a coma then they could try to bring him out but only if he wants to continue to live very dependently and on the strict diet and meds. He needs a good night sleep and I know that with God's grace and mercy and the right time we will get this figured out.

Will keep posting and thanks for the listen.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/10/2005 11:15 PM (GMT -6)   
jlm,
 
I'm so sorry that transplant is not an option for Bryant. This disease is a bi***. And the pain is just not fair.
 
I know that this sounds harsh, but you need to make sure that you, or someone, have medical power of attorney, so that decisions can be made. We went through the DNR questions and contacted hospice and had the family fly in.  It was very, very difficult. So, I do know some of what you must be feeling.
 
Hospice will keep him comfortable, if that's the choice that the two of you make. They will work with the doctors and get him anything he needs, up to and including pain meds.
 
You can also get respite care, so that you can take a nap or a walk or whatever for your own health and sanity.
 
God bless and let us know what we can do to support you here.
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 8/12/2005 1:12 PM (GMT -6)   
[Moved to new topic - Welcome adlady16 ]

Post Edited By Moderator (DesertJules) : 8/13/2005 3:10:42 PM (GMT-6)


joanney
New Member


Date Joined Aug 2005
Total Posts : 2
   Posted 8/12/2005 5:03 PM (GMT -6)   
Am trying so hard to cope with my long time companion's illness. He was diagnosed with alcoholic cirhhosis and Hepatitis C a year ago. Since then he has gone down hill steadily inspite of medications and frequent drainingof the fluid in his abdomen. He has not had any alcohol in over one year, but he just seems to get sicker all the time. GI doctor said a year ago that he might have 2 yrs. left but now after recent hospitalization am told that his kidneys are now failing. Waiting to hear if he will be evaluated for both a liver and kidney transplant. I am so thankful to have found this forum to just let it all out. I try to stay so strong but it isn't always easy, especially since he cannot really cannot carry on a meaningful conversation (yes he is on Lactulose) and when he gets really badly disoriented I increase the dosage. Thank you for letting me get all of this off my chest.

jlm
New Member


Date Joined Aug 2005
Total Posts : 4
   Posted 8/13/2005 9:19 AM (GMT -6)   
Good morning all!
I am here with you in heart and spirit as we struggle to care for and find the daily answers to helping our loved ones. Knowing there are others who have and are traveling the same path REALLY helps.
Bryant has had two good days ( reg meds 1 tbsp lactulose) with good sleep and the fluid is not returning to his belly (ascites) as quickly. I feel he is my science experiment - the doctors arent really that much help - I give him small regular low protein nutrition, electrolytes, limited fluids, and try to
keep a sunny disposition. And I am enjoying each precious moment with him as that is all we ever really have anyway. A lawyer is coming over on Monday to work on all the papers - medical directive,
power of attorney, trusts, etc. Only hope he will be as enthusiatic and lucid as he is today.

love and prayers

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/13/2005 3:01 PM (GMT -6)   

jlm,

What a wonderful message! I can feel the positive energy.

Sounds as though you're getting a real handle on the meds, diet, fluids, and attitude balance. Kudos! It's not easy, but it is incredibly satisfying to find that balance and see the positive results in the ones we love.

I have been where you are. One of the ways I kept sane was to never look beyond the instant I was living. And laugh - often and well! It's very difficult to find humor in the day-to-day battles, but it is there.  I posted about one of Mark's really bad days in the hospital in a thread here, somewhere. We still laugh hysterically about what his roommate must have thought.

God bless and keep you strong.  Let us know if there is anything we can do to help.


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 8/17/2005 6:13 PM (GMT -6)   

adlady16,

How are you doing?

[I moved your post to a new thread, so that it wouldn't get lost.]


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.

jmg1976
New Member


Date Joined Aug 2005
Total Posts : 1
   Posted 8/19/2005 1:04 PM (GMT -6)   
hi my name is jeremy my father has enstage liver disease. the doctor told us enstage liver disease is final. i don't know how bad your bother is but my father's blood dosen't clot his body is very yellow he takes 9 different meds and they don't work like they used to cause the body just gets used to them. My father is in lot's of pain all i know it's a very painful death. he is at such a high risk that they wont even do a transplant all i can say to you and your family is pray and our family will pray for him to. 

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/20/2005 1:43 PM (GMT -6)   
Welcome, jmg1976
 
~Jennifer~ has started a new thread for you, so that your post doesn't get lost. [Let's Welcome JMG1976]  http://www.healingwell.com/community/default.aspx?f=25&m=307728
 
Please keep posting.  We're here to support you and your family through this difficult time.  If you have any questions, someone here should be able to help you find some answers. We're happy to just listen when you need to talk.
 
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 8/20/2005 1:46 PM (GMT -6)   

jlm,

How did the meeting with the attorney go?  And, how are you and Bryant doing?

God Bless. Let us know if we can help in any way.


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 8/26/2005 7:55 AM (GMT -6)   
Hi All! Mom is doing much better. She's acting like her "old self" again. It was sooooo hard to see her in the ER totally incoherent. All she was doing was praying and didn't know who we were. She's taking much less
percocet for her pain in her legs which is a very good sign. I plan to go see her this weekend (she's in rehab where they're helping her with her legs) Sorry I didn't reply sooner -- my new Apple G5 at home is on the fritz and had to go in for repair, but I constantly check email, etc at work.
All of you are in my thoughts. Be that rock for your loved one --- they need it. Stay strong.
(Then when you're able, break down with your favorite bottle of wine!)

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/27/2005 8:55 PM (GMT -6)   

adlady16,

I'm so glad to hear that your mom's doing better.

Hope your computer's feeling better, too!  (I'd be lost without my laptop.)

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.
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