HE and 35 years with 1a/end stage

[PeachyRoses]

Even though I work in the healthcare field, I was completely unaware of the HE that comes with end stage cirrhosis. Through other experiences what else am I in store for?  Here's the background on the person I care for. Type 1a contracted around 79-80 via blood transfusion. Drinks no alcohol, long term obesity, diabetic for years then as of a few months ago....A1c levels are normal. No change in diet. Liver is 7cm, spleen is at least 16cm as of few months ago. Platelets hovering around 40-50. Now WBC are dropping. Doctor's won't up lasix, just started aldactone. The fluid is making the umbilical hernia worse. Sleeps on 5 pillows and c-pap, and still struggles to breathe. Nosebleeds have never stopped but the coughing up blood has because he can't clear anything in his throat/lungs.
As of the past few days he's been awake most of the time. Doctors said in 2012, it could be NASH as well. Tumor markers like AAP, ferritin level, AFP..etc..... Both parents died of various cancers. In a period of 2 weeks he has gone from regular breathing (regular rate rhythm and depth) to unequal and his apenic moments are longer. HIs CO2 levels in his blood are rising. His bilirubin is rising, albumin is falling, hemoglobin and hematocrit and RBC are all critically low and INR is prolonged.  He has episodic moments of stumbling, breaking dishes (due to lack of grasp) slurred speech episodes....This is the worst case of suffering I have ever witnessed. I did find out he would qualify for hospice but he would have to agree to it, but no one can convince him that it means he has 6 months or less. The marked personality changes are only getting worse because this is not the person I've known and loved for 5 years. How much worse does it get before his liver finally gives out completely? Doctors said it's been cirrhosis since January 2010 and in 2010 he was only operating on 20% function then. How much more suffering am I going to witness?

[keepingOnkeepingOn]

He is clearly confused to the max. I have been there and he should not be in charge of his medical decisions. If I had laid there and did nothing I'd be dead. If doctors didn't call with labs and demand that I to get to ER right away, I'd be dead. If I wasn't rushed to ER the many times I was, I'd be dead. The point is, I was not cognizant enough to know what the hell was going on never mind make a decision about it. Put your foot down and get him to do the right thing. Be bold. A confused mind can't make decisions.
A shot of morphine and he'll go along with anything. Tell him it's to make him feel better. You'd have to have been there to know what kind of confusion I'm talking about. It's very strange to experience it. Like having my phone in my hand and not knowing how to dial it for the entire day. Let ER decide what he needs. They will admit him into ICU and he is too sick to walk out anyway. Other than that the hospice sounds ok if he wishes to end it all.
It's too much for you to take care of him. He needs morphine and you need nurses for home healthcare if this continues.
Stay strong and keep us posted.

[PeachyRoses]

Thank you Kim. When a surgeon says, "I'm not going to be your executioner" it kinda throws a healthy person for a loop, much less a sick person. How do you have hope when surgeons say that sort of stuff?

[Livelife777]

Hi and just want you to know how sympathetic I am to your situation.  As Jo says its truly tragic.  Sometimes when we are down and out with our illness, at times it's such a struggle to survive that it also takes down our spirit or will to live.  I think he has to have hope at this point, or something to believe in.  Perhaps a kind and compassionate soul in an authoritive role such as an MD may sway his views to want to get better.
Want you to know that we are thinking about your loved one, and hope he gets the help that is so needed.
Warmly
.....Kim

[nursehepc]

I am so sorry. It does appear that you have a loved-one that would benefit from hospice at this point.

Its tragic. I am sorry. You are caught in a helpless situation. You want to help your loved one, but they are not allowing it. He won't accept hospice and he won't accept medical intervention (e.g., checking ammonia levels, transfusions).

My heart goes out to you and your loved one. I am so sorry. Joanne.

[PeachyRoses]

He doesn't want an updated ammonia level. He says he's tired of being poked with needles. I even brought a local ER nurse to my house to talk to him. His hemoglobin last week was 11 something. His total RBC's were 3 something, and his WBC was 3 something. He's got a APRI score over 11 now. He is a Class C on a CTP score. The only way he agreed to transfusions is if they attempted to fix his hernia's. But other than that his advanced directive stated DNR all the way around.

[PeachyRoses]

He was declined in 2012, hector.

[keepingOnkeepingOn]

My heart goes out to you and your loved one. It sounds to me like he needs to go to ER. Low hemoglobin is fatal. The nose bleeds say it all. ER May give him transfusions and oxygen. What is his Hemoglobin count? The high c0 2 levels you mentioned are scary. My doc tells me to tell my friends and family when I get very confused and weak I'm heading for a bleed-out and to take me to ER. The docs can't help at this moment but ER can. Is his ammonia level high?

[HectorSF]

Here is the website for the hospital and their gastro and hepatology department for more info.

http://www.uab.edu/medicine/gastroenterology/centers/liver-center

UAB Liver Center Email:  livercenter at uab.edu

Hector

[HectorSF]

Only liver specialist doctors and nurses can care for a person with this advanced stage of liver disease. You can be expected to care for this person. It requires specialized training the only a few people have.

They need to get to a liver transplant center ASAP. Luckily you are in a city that has one. Many of these complications of their cirrhosis can be managed and stabilized but only under the care of doctors that work at a liver transplant center where they specialize in caring for people with all of the complication of advanced cirrhosis you mention. Without proper specialist medical attention liver disease will only get worse over time.

Thank you for reaching out to help this person who somehow has slipped through the cracks. They need specialize help now to prevent their prognosis from being a fatal one.
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They should be able to direct you so you can help you to help this person who is suffering needlessly more than they need to. Only liver specialists that work on a daily basis with people with all stages of cirrhosis can help this very ill person.

I would call as soon as possible.
Thank you for helping to relieve the suffering of this person. You might just be saving their life.
If you have any question let me know. I had a liver transplant last year and volunteer at my transplant center now so I know how the process works.

Hector

[Dee1956]

Hi you are so very welcome.  There are many many people on here more than willing to share their experiences, help others, provide support.  It is heart warming how much they care.
It is the weekend so slower than it would normally be during the week.  I did not want you to be left hanging.
I know what that feels like :)
Take Care, hang in there.
Dee

[PeachyRoses]

Thank you so much.

[Dee1956]

Hello there, I am so sorry to hear of his condition.
Have the doctors placed him on lactulose or the antibiotic that can be taken for HE?
While this is a good forum for HCV, there are not a lot of people on here with the degree of cirrhosis you are talking about  There is another site for Cirrhosis which might be more helpful to you.  You could copy and past the same question and place it there.
You would receive information from others with cirrhosis
Just trying to help as another member HectorSf helped me way back when..Thank God he is still here, still helping people, still paying it forward,  I wish you the best

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390