Ambulating more and his thinking seems clearer

Thank you, ladies, for your replies and insights.

Why does Jim not want a transplant? I'm not sure. He made the decision while he was mentally confused, so maybe now that he is more clear headed, he and I should talk about it. One thing I know is that they don't do transplants in Delaware, so we would have to travel to Philly, NJ, or Baltimore for "vetting" and the surgery and follow-up. He never has been real keen on going to the big cities. New venues confuse him on a good day!! He also has signed a strict DNR order with the Hospice and the hospital.

Annette--Home based Hospice. Those are services from a Hospice group performed in the home. The Hospice we chose does not have its own facility, although it contracts with local hospitals and nursing homes for rooms. Here at home, he will receive nursing, aide, pastoral, and social services care. This Hospice even has a massage therapist!! They also provide all the meds for his liver DX and will provide needed durable medical equipment. Or at least that is the "promise."

Connie--Explosive BMs at PT. That's going to be a risk we run, although because his daytime BMs are associated with eating, I won't feed him before we go to PT. He also seems to have more "control" when we are away from home than when we are here. I receive massage therapy for the "cording" in my arms. Cording is some sort of goofy scar tissue that some women get after a mastectomy or radiation that forms slightly below the skin from the armpit down through the elbow and for some women into the wrist. It can be "broken up" by deep tissue massage. It comes back, but less and less each time. The cording restricts my range of motion. I can only lift my right  arm about 45 degrees from straight out without pain and restriction. I had PT on that side after the surgery and was fine, but the cording returned after radiation. I don't qualify for home-based therapy because I'm not disabled; Jim's being house bound does not qualify ME as disabled.

Teresa--Thanks for the plain water observation. That's easily enough fixed. He loves juice drinks. Jim is on Boost, but I don't push it as much as I probably should.

Question about the diuretics. Jim's been off for more than a week now, and is doing much better because of it. He is no longer chilly all the time, he is thinking more clearly, ambulates better, can bend over to pick something up off the floor, even went out yesterday to visit some of his bar buddies (water only). Of course, his belly is getting bigger and his left foot is starting to swell. Is this the tradeoff of diuretics: ascities/edema v. brain/walking/temperature?

If so, how do you manage that? Or once the sodium, blood pressure, BUN, and creatinine are back into normal range, do the diuretics not cause those horrific side effects?

"There is just nothing simple about managing the disease in Mark's case."

You are so right! There is nothing simple (or even mildly complex) about this disease. Fluids, sodium, medications, exercise.....a real combo crapshoot.

SIGH.

I talked with Jim tonight about going onto the transplant list. He again said NO. All the hassle, the distance, the questions, the tests, with no guarantees he would come out the other end OK. I don't disagree with him.

I am trying so hard with the diet--a 1200cc fluid restriction and a 2 mg sodium restriction. And the "pushing the protein" thing. although I don't really understand that given his body cannot well process protein.

SIGH!!

Thanks for your response, Teresa.

You are right about the protein. But it is in the boost, they make it with high protein. After drinking the boost for a few weeks I could tell a difference in him and his labs got a little better. He did require more sliding scale insulin though. Mark doesn't eat red meat anymore either, he does eat chicken breast. He is at the point where he would prefer to just not eat meat. His meals are small and frequent. They don't have him on restricted fluids either, they did at first but dehydration was an issue and I could not tell it helped with the ascites at all.

Teresa

Hi Venita, hopefully Jim will continue to do better, it does make it easier when they are. Mark periodic episodes of encephalopathy just floor me at times. He will seem to be like his old self, then out of nowhere after a good week or two, he goes into extreme episodes. So I do not know if there is any "balancing act" with one symptom or the other. I do know when Mark was having trouble with renal function, the BUN being high and Creatine going up, he drank more fluids and it did resolve itself, he was off the diuretics. The ascites continued like they had been doing, paracentesis every week  with 10-12 liters off every time. I guess fluid restrictions work for some people. I try to keep Mark from doing too much, because alot of activity did aggravate the ascites, his legs would get to the point he could not bend them, or dress himself.

Mark has those spells also of not washing up or changing clothes for a few days at a time. He used to be Mr. Clean, before his illness showering a couple of times a day, and you would not ever see him dressed in "warm ups" or wearing a robe all day.

I had to laugh over the remote control, Mark has been at the point where he could not even figure out how to turn the TV on. I know it is not funny, but watching Mark was comical!

Hugs

Teresa

I understand what you are saying, but Jim, although demented, is an adult and can make his own decisions about this. The decision not to pursue a transplant is consistent with the provisions of his living will, advanced health care directive, and DNR order.

I don't have the energy to fight him on it, especially because I can't give him any assurances about process or outcome. (And with outcome, I don't mean only acceptance onto the list also the outcome of the surgery and ongoing immunosuppresant therapy.) I am trying now to fight him on adult day care and Hospice home health aides--me yes, him no. I spend most of my energy just trying to keep up with his daily needs and my breast cancer treatments. My house has gone to crap, my job has gone to crap, I can't get coorperation from him on much.

I guess you fight the fights that are worth it and that you might win, even though the chances are slim.

Thanks for your advice and my hopes are with you and your husband for a successful outcome to your quest!!