end stage liver disease

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.

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.

Thanks, DD. Glad I could be of some help.

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

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

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.

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.

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.

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.

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,

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.

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. 

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.

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.