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Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/13/2007 11:09 AM (GMT -7)   
(Synopsis for those not following us. I am nearing the end of treatment for breast cancer. Jim went into liver failure at the end of August, and is now end-stage. Alot of dementia although not combative. He's been at my home now since Thanksgiving, and I have been his 24/7 caregiver, except for a private duty aide every other night.)
 
Jim is doing better. He is ambulating more and his thinking seems clearer.
 
He has been off Aldactone and Lasix for a week. The GP ordered them discontinued because his blood pressure was so low, and the GI DR confirmed no diuretics with another blood test; increased BUN and Creatinine (kidney values). But the ascites is coming back, despite a strict 1200cc fluid diet. His body can't process the fluids into his cells and it accumulates in his belly.
 
His MELD score (18) now would qualify him for transplantation, but he doesn't want to go that route.
 
He signed himself into home-based Hospice yesterday. I so hope they deliver on their promises of care. (The 2 Home Health Agencies never could achieve their plans of care.) I chose this particluar Hospice because they do not consider things like blood draws, pericentesis, and listing for a transplant to be "invasive procedures" that would require discharge.
 
Jim also had been ordered off Lactulose for about 4 days, but now he's back on 15 ml BID. Now his body has to readjust. He was over the explosive bowel movements, but now they are back.
 
I tried an Adult Day Care program for him one day last week, but a couple situations came up so that he refuses to return. There is another program in the area that we will visit next week.
 
(As for my breast cancer, my surgeon insists that I resume physical therapy or I will lose range of motion in my right arm and shoulder. Now that Jim is ambulating better, he is going to go with me and sit in the waitiing room or my treatment room. It's hard to find a "Jim-sitter")
 
My best to all!! 
 
 
 

Venita and Jim
Wlmington DE

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/13/2007 2:50 PM (GMT -7)   

Hi Venita, Sounds like you are getting things in order here! It is good to hear Jim is more ambulatory! Mark's doctor wanted, him to get more proteins because his protein levels were too low, albumin is a protein that helps keep the fluids in the veins, so he is on boost as the doctor ordered. I have also been told as far as the fluids go, plain water tends to leak out more than flavored water, so he drinks juices and water with a sqeeze of lemon juice in it. So he does not drink, plain water anymore. This is suppose to help with the ascites. Marks ascites was pretty bad, paracentesis every week, taking 10-12 liters off each time followed with albumin replacement. He did have to have a TIPS done, it has helped with his quality of life. Mark has also been taken off of diuretics and then when the creatine and bun got back to normal, put back on them. It is very hard to get the right combination of drugs for their symptoms. And very easy for them become dehydrated!

I do hope the Hospice team, works out for you! I am praying things go more smoothly for you! I hope everything goes well with the last treatments for your Breast cancer. I will be thin about you!! Take care!!!

Teresa


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/14/2007 11:44 AM (GMT -7)   
Venita, what if Jim has explosive BMs while waiting for you at therapy? What type of therapy are you receiving? Could it be done at home by yourself or with a visiting PT? My aunt had a mastectomy and uses her inground pool for exercise of the affected arm. She had many nodes removed. She also uses cans of soup for curls, etc. (even though I've told her about 1 and 2-lb. weights.)  She is wheelchair bound from an accident many years ago, so it wasn't practical for her to go to outpatient PT. She no longer drives. BTW, her mastectomy was 10 yrs. ago and she is doing great!

Did Jim give a reason for not wanting a transplant. I know it's a very personal decision, but has he really thought it through?

You have a lot on your plate, but you seem to be doing a really fine job of managing it all.

Hugs,
Connie

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/14/2007 6:10 PM (GMT -7)   
HI VENITA, I JUST WANT TO SAY THAT MY HEART GOES OUT TO YOU AND YOUR FAMILY, YOU CERTAINLY HAVE YOUR HANDS FULL WITH YOUR HUSBAND AND YOU NOT WELL, CAN I ASK WHY HE DOESNT WANT A TRANSPLANT? AND WHAT IS HOME BASED HOSPICE, I KNOW WHAT HOSPICE IS? I KNOW WHAT KIND OF STRESS YOUR UNDER AND THEN TO HAVE TO DEAL WITH BREAST CANCER IT HAS TO BE REALLY TOUGH!!!! IT JUST TOOK EVERYTHING OUT OF ME WITH MY FATHER BEING SICK FOR 6 MONTH STRAIGHT, JUST NON STOP, ON A DEAD RUN. THE ONLY WAY IT ENDED IS WHEN HE PASSED AWAY, NOW I FEEL LIKE I CANT GET ENOUGH SLEEP.
WHAT MAKES ME ANGRY IS THAT I DO NOT KNOW HOW HE GOT THIS HORRIBLE DISEASE, ITS DOWN AS UNKNOWN ORAGIN.
IT SURE SEEMS LIKE YOU HAVE EVERYTHING IN ORDER, AND YOUR DOING ONE HECK OF A JOB, JUST DONT WEAR YOURSELF OUT.
THEY SAY THAT GOD NEVER GIVES US MORE THAN WE CAN HANDEL, BUT SOMETIMES I HAVE TO QUESTION THAT!!!! PLEASE TAKE CARE OF YOURSELF.
MY THOUGHTS AND PRAYERS ARE WITH YOU.

MYFATHERS CHILD
ANNETTE

Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/15/2007 5:21 AM (GMT -7)   
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?
 
 
 
 
 

Venita and Jim
Wlmington DE

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/15/2007 3:41 PM (GMT -7)   

Hi Venita, I do know everyone is different with the diuretics. Mark has been taken off aldactone completely at one time because his potassium would get extremely high and the electrolytes always seemed to follow suit with it. They then put him on amiloride, which caused him to go into renal failure. They stopped that. Now they have him on aldactone with the dosage lower than the lasix. So far it is doing a better job with the fluid, his TIPS works when it decides too:( Mark is usually pretty clear headed, but when the encephalopathy hits, it seems to always hit very hard. His usually hits because of a infection these days. I do think nutrition is a key factor in helping to control the ascites, because the albumin, HCT, HG, protein levels and platelets get so low in endstage disease. With these things being low, the blood pressure tends to be low and ascites tends to worsen. There are so many "trade offs" with this disease. It is just so hard to get the right combination of drugs that work. Marks doctor just has him on a low sodium diet, for these reasons, and has told Mark to increase the protein. everybody does respond differently to diet and drugs. There is just nothing simple about managing the disease in Mark's case.

Teresa


Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/15/2007 11:48 PM (GMT -7)   
"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.
 
 
 
 

Venita and Jim
Wlmington DE

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2007 12:26 AM (GMT -7)   
Venita, 2 mg of sodium? Yikes! That is really low and, I would think, nearly impossible. I agree with you about the protein, also. Protein is the most difficult thing for the body to digest, particularly animal protein (meat.) It takes 3 days to be broken down by a healthy body.

I've never been put on any dietary restrictions for my hep C or liver cancer. When I was having really bad lower extremity edema for several weeks, after the recent hip surgery, I was told to restrict fluids and sodium, but not that severely. It really did not help the edema at all. One day I woke up and had no edema and have not had it since then. Very odd.

Hugs,
Connie

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/17/2007 7:56 AM (GMT -7)   

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


Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/17/2007 8:57 AM (GMT -7)   

Cellular dehydration is Jim's biggest problem right now. Renal values out of whack. Sodium low. His GI wants weekly blood draws for a month to monitor. I really wish the GI guy would explain the "balancing act" to me.

And I'm not sure I'm keeping him under 2mg of sodium a day, because I don't "add it up." I just know I try my best to keep the amount as low as possible. I do know I keep him at 1200ccs on most days. Somedays, though, he is so thirsty, and I go with the flow.

Jim has been off the diuretics, I think, for 2 weeks now. He is really getting back to himself. He is ambulating without the walker (scary) and going up the stairs by himself. But he does have those spells when he just doesn't want to get out of bed. He hasn't washed up or changed clothes for 2 days.

Jim is a huge Philadelphia Phillies fan. I bought him DVDs of some of the games from 1980, when the Phillies last won the World Series. He watched one game yesterday and was completely happy with his time alone. He even learned how to pause and restart the DVD, which he never figured out before his illness. This from a man who 2 months ago would confuse the telephone with the TV remote control!

Thank you all for your insights, advice, and friendship.


Venita and Jim
Wlmington DE

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/17/2007 9:54 AM (GMT -7)   

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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/17/2007 9:45 PM (GMT -7)   
Hello Venita, I just had to jump in here. I am concerned that Jim does not even want to try for a transplant. Yes it is true that there are no guarantees but it may very well be his only chance to live longer and have a better quality of life. My husband has been trying to make the transplant list for over a year now. It has been a long hard fight for both him and me. And he still may not make it. I know it is Jim's decision but I guess I don't understand why anyone would not want try and live longer if there was a chance of a better quality of life. We have went through 1 evaluation process once and are currently waiting to hear when the 2nd one will be. During the first one we were required to go through a group meeting with other people attempting, people on the list and also people who already had transplants. It was the most encouraging thing that we had done. We met a lady that had a transplant 12 years earlier and she was still so healthy and said that it hadn't slowed her down much at all. We also met a young lady who had a transplant only a few weeks before and she most inspiring. I consider this journey for a liver for my husband like the lotto. If you don't play you can not win. My husband may not win anyways but we will continue the quest until we hear the words. ( Uneligible for a liver transplant.) I'm sorry for going on about this. I guess because of our long hard struggle I got very passionate about it. My thoughts and prayers are with you and Jim. Pink Grandma

Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/18/2007 4:17 AM (GMT -7)   
Hi PG,
 
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!!
Venita and Jim
Wlmington DE
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