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!!!
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.
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.
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.
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!