So many questions, confused

In my previous post "here we go again", I wrote about my brother who has cirrhosis and is in the hospital. Quick recap spent 5 days in the hospital, was released still confused and weak. That night he started bleeding internally (stool, coughing up blood etc). He goes back into ER, they tapped the fluid out of his abdomen, drain over 500cc's of blood from his stomach. Put a tube down his nose to do that, did an emergency endoscopy (I think I have the right term), put him on a ventilator and sedate him, he was in acute renal failure. The bleeding stopped on it's own. They found stage 1 varicies but said it was ulcers that may have been bleeding. They put him on Octreotide via IV for the bleeding and Protonix. He got 2 units of blood and stayed overnight on the ventilator. They took him off that the next day and he was very wak and tired but awake, talking and making sense, not on Lactulose as they had him on the week before. They also gave him morphine prior to the bleeding. But after the bleeding incident he had stomach pain the last 2 days and they're very hesitant of pain meds because they say his liver is failing and he needs a transplant so they are giving him an all Stuart pain med that isn't hard on the liver. His hemoglobin was still lowering but no bleeding so he got another unit of blood. His hemoglobin went from 7.6 to now 8.4 today but his platelets were only at 77. Yesterday they tell us he has an infection in his colon/intestines called c-diff so he's on antibiotics for that. They took him off the Protonix today his stomach wasn't hurting him. Still very weak and tired but alert and talking and making sense completely. Is this infection a serious thing to be worried about?? For someone whose dr told me he only has a 10% change of living 6 months sober to get on the transplant list.......he doesn't SEEM as bad as I would expect him too. He drinks lots of fluids, still peeling and pooping. They moved him up to a soft heart healthy diet today. He's not eating a ton but he's eating (jello, Italian ice fruit etc). I guess I just don't know how worried I need to be. I know he is very sick. But it seems like he's making baby steps in the right direction? I'm afraid to getting hopes up though. He seemed very tired the first half of today but then SEEMED to get a little better. I'm so confused and scared. Cold he still at anytime just go downhill fast?? A couple other small things. He's had a few PVC's on his monitor, heRt rate is fine otherwise. His breathing changes, sometimes quickens and slows down (I watch the monitor) but he never seems to notice. Then I feel like the drs and nurses don't say much unless we ask them? What other things should I be asking them? Today his nurse said once the GI dr takes him off the Octreotide and if his hemoglobin remains or goes up he could be moved out of ICU. But again what about this infection? I've read some bad things about people with cirhosis who get it. And I feel like the drs and nurses have a look of pity on their faces when they talk to him. Are they just not telling us the whole picture?? Ugh....so lost and don't know which way to think about everything

CG, he is still gravely sick.

Sober and on meds he seems to be rallying. He is a fighter. But what is his goal? Same as yours? Get stronger, stay sober, pray for a transplant? Or is he anxious to get well enough to get to his next party? I hear how much you want this to work. What is he telling his family? What do you belive in your heart?

Cdif is a risk for folks with advanced liver disease and is tough to cure. They have some very odd tretments that help. I hope he responds.

Each day he seems some better, even if it is two steps forward and one back.

Hugs,
MamaLama

Cat, First of all....Even doctors don't know how long someone will live with ESLD, but they have a good idea. Many here have been told they will not survive. Get used to that. And some don't. I guess a lot is up to your brother and what he wants to do to live. And yes, if he has cirrhosis with a MELD of 30, he will die without a transplant. How long that will take is unknown.

The list: The sickest are at the top, and sober. So...if your brother got on the list in 6 months with sobriety in place and a MELD 30, he would be wayyyy ahead of my husband with a MELD 14 who has been on the list since last summer. If my husband suddenly is a MELD 31, he would be higher than your brother....but each has other things looked at. Blood type, for one. Body size for another. And being at the top is not really so set in stone. And, you must be well enough, have the right financials, support system with caregivers, etc. The other thing is this. Your brother will likely need full time caregiver/s as he will continue to be ill until transplant.

Did your brother make you his Power of Attorney for Health Care, and his General Power of Attorney? You may not be getting the info, as his girlfriend he lives with for years might be the one he gave his POA to. If your brother still has no directives, that needs to be done now.

about the C-diff :
http://www.cghmc.com/printpage/index.cfm?pageid=21

Of course, any infection is serious, but he is in hospital being treated.

Your brother had a gastric bleed as did my husband....and I did not know he had black tarry stools until he drifted in and out of consciousness. He nearly died. My husband's first serious problem with liver disease was a gastric bleed. That was many hospitalizations ago, in 2010. Themister went through about the same thing with ER, EGD, and was in hospital about 4-5 days. My husband does not drink,...but has Hep C.... so this was just liver disease progression in his case. Portal hypertension causes this in liver folks. Your brother may be put on Omeprozol and a blood pressure med, if he already doe not take them. That was our experience with a gastric bleed. VERY serious, then home and fine until the next crisis.

Themister's platelets have been in the 70's most of the time for 4 years. But lower when he had Hep C treatment in 2011-12.

Much can change in liver disease. This is the nature of it. My husband has been near death 3 times in 4 years, but really...he could have one crisis right now and that be his last crisis. This is reality with this disease. Without a transplant, he is terminal. Of course he can crash and go downhill at any moment. Or, he may improve and go home until the next crisis.

So, if your brother wants to live, he must get well from this episode, do all in his power to be healthy, not drink, and get the 6 months sober to get on a list. He must want to survive, be well enough to get on the list, and actually survive for as long as it takes. And not everyone on a list will survive. It can take years with a lot of hospital trips, and more doctor visits. If /As he gets well, his MELD may improve. You can get the three numbers every day in hospital and run his MELD on your own. Creatin, INR, Bili. Ziff can tell you how his MELD improved. BUT Cat, your brother must want this. He has big problems with compliance. His girlfriend drinks and she has been who he goes to post hospital crisis. He may drink until he dies. And you can not do fix that. Up to him.

Get very used to not knowing the next thing to expect if he survives this time. This is liver disease 101. Are you asking too much? Yep...no textbooks ;)

Big hugs,

Mama brought up a lot of great issues. Take this one day at a time. One of the hardest things about ESLD is that it is so unpredictable.. Course life is that way. Take it one step at a time. The infection is a big big issue. Hope they get that under control.


Sandia

We aren't hearing from you...worried. ML

Thx for posting. Glad to hear things are some better. ML