When I left the hospital two weeks ago, my liver numbers had improved significantly. I entered the hospital with an alkaline phosphotase level of 650. Two days later, it was 750 and a week after that, it hit 1147 and is 1198 now. Since the numbers dropped so rapidly when I was in hospital, there has to be something different at home that is driving the numbers back up.
One of the prescription meds I take at home but was not taking in the hospital was discontinued last week in the hope that it was causing the rising numbers. Discontinuing that drug seems to have reduced the rate of increase in the numbers but it has not reversed it. Another drug I am taking that I wasn't taking in the hospital will be discontinued this week to see if it is the cause. Hopefully that is what it is because I am getting tired of the delays.
I am currently getting 1850 calories/day in the TPN. We could raise that but not while we are trying to track down the reason for the liver disfunction. We hopefully will be reducing the amount of additional IV fluids I am getting as the swelling in my feet and legs is getting fairly significant.
The food cravings continue but I do get to have some juice or other drinks here or there, I just end up venting most of it into the toilet through the PEG tube. It is frustrating not to be able to use those calories but a few ounces of grape juice or a popsicle does at least give me a small amount of oral satisfaction.
The big question is "When is surgery?" and the answer is who knows. Until we get this liver issue under control, there is not much point in thinking about surgery. Dr. Boudreaux wanted the liver to be managed well and to have me stronger but neither of those are happening now. Right now, I imagine I won't see the operating room till sometime late in May at best.
I am continuing to hang out on the couch, watching TV, reading, and browsing the web. I usually take a nap every day and am just waiting out the clock now, hoping for these liver numbers to come back in line.
Hi Ron,
ReplyDeleteUghhhh! Frustrating news about the liver!!! :/ I don't remember if you are on a fluid drip at home too but I know the fluid drip always helps my Gran tremendously, it could be what was getting your liver levels back in line. I know you have a team of people with REAL medical knowledge helping you not just those of us who are getting hands-on training during hospital visits lol but I thought I would throw this out there because fluids are such a lifesaver.
We continue to hold you all in our hearts. Hopefully the situation with the liver will resolve and you will be headed off to surgery soon.
Take care,
Deann