Liver Specialist Update

The liver doc was happily surprised with Mom's latest blood results. Potassium level is smack in the middle of the normal range, but even better, her alk phos levels are way down. Normal is below 130. Her high point was over 1300. She is now down to 179. Not quite normal yet, but very very close and literally nearly ten times better. The medication for the primary biliary cirrhosis seems to be working, but it could also be due to a decrease in her nausea medication, which notoriously raises alk phos levels.

They did tell her (both the resident training under the specialist, and the specialist re-iterated, and they gave me some paperwork on hepatic encephalopathy (basically toxin-related confusion; read more here) that states that people with it should not drive. They said it carries "tremendous risk", but her primary doc uses the thought of driving as a carrot to dangle in front of her to push her to gain weight and strength. I fear she will tire of her primary doctor's game. He tells her to keep up the good work and that maybe by the next appointment she can drive. That will only hold her off so long and when she realizes that he will not let her drive, she will feel betrayed, never listen to him, and try to drive on her own anyway.

The hepatologist also said that, even with how much Mom hates that I'm always in her business, I'm supposed to be paying more attention and I'm not monitoring her enough. Mom was told to accept help and accept that she can't drive anymore and to allow me (so I guess I was volunteered and not told to do this) to monitor her lactulose intake among other things. This was a bit scary, because we didn't know that her confusion was so dangerous. We were told that if we let this go unchecked, she could fall into a coma, and would likely never come out of it. Convincing Mom to let me do this, however, is another matter, and she resents relying on me as much as she does. She misses her independence, and I can't blame her for that, but with her illness, independence isn't a luxury she can afford to keep and stay alive. I'm trying to figure out a way to keep tabs on what the doctor said I have to pay attention to without bugging her everyday. I did purchase an expensive pill box called a MedCenter (see it here). I'm really hoping this helps her to keep track of which pills to take when without me having to stand there over her shoulder every time. I also put her vitamins in it, which she wasn't taking and the liver specialist said that her abdominal pain is her ribs and not her organs. Her ribs are very painful and it is likely due to her osteoporosis which she has not been treating because she feels she swallows enough pills and has refused to take calcium supplements.

Also less-than-good news is that I'm sick....again. I'm going to attempt to apply for government assistance with medical insurance and see if I can figure out why I've been sick for six months straight. This doesn't have a lot to do with Mom, but it makes it harder to care for her when I'm so exhausted from being ill and I worry about giving her my germs. It means face masks while cooking and it's already hard to breath, and staying away from her in general, which makes care-giving that much harder. Any ideas that would make life a little easier are always welcome.

Mom's Eating Oranges!!!

GOOD NEWS: She has taken to oranges! She has eaten a half dozen in four days. FINALLY a healthy craving! Also, she is really trying to stick to a low-salt diet. She has limited her pickle intake and is eating graber olives instead of manzanilla olives. Graber olives have significantly less salt than manzanillas and she is limiting her intake to a serving at a time. She has that goal of driving again stuck in her head, and for now it is pushing her to do better. She is going to try to attend an orientation for volunteering at an animal shelter tomorrow (my boyfriend would be driving/helping her when she volunteers, which helps her to feel less dependent upon me) and possibly get some baby facetime with the grandkids.

Less-than-good news: I have had to take her meds from her and watch her take them again. She keeps taking night-time meds in the morning and yesterday, she took two morning doses and an evening dose, then looked for another evening dose after I put them away. I asked her to wait for me to confirm what she is taking, and she tries, but the concept fails when she asks me AFTER she has swallowed them. Thus, I will move them until she seems to be a little more clear-headed and can dose herself as normal. We do this from time to time. My worry is that it usually coincides with her getting sicker, but she seems to be physically healthier as of late. This contradiction worries me, and will be addressed this coming Thursday at her appointment with the liver specialist. I don't want her losing her marbles when she's finally getting physically healthier and making better decisions to stay alive. Another small bit of bad news is that we have to re-draw some blood taken last week. Her potassium levels are still low, and the primary doc had blood drawn to confirm before increasing the dose. The lab compromised the sample and we have to take her back in tomorrow before the orientation. This should not affect the liver specialist appointment.

Blood Tests Galore

Had a doctor's appointment last week. The good news is that Mom's belly is so low, her skin is actually starting to sag a bit from being so stretched out before. This means her ascites has improved greatly. The doctor was very happy that she's gained 2 pounds. He said it indicates that her nutrition has improved. She's been eating a lot more eggs and I got some frozen teriyaki chicken (all she has to do is microwave it), and she loves it. She hasn't had any more fruit or veggies since that two weeks when she had one orange and half an apple and got my hopes up, but she hasn't had chinese food or anything superheavy in salted brine in probably more than a month. She asked the doctor if she can drive again, and he told her not yet. He did say that if she continues to improve (i.e. gain weight and strength) that he will allow her to drive, starting with a 5 mile radius from the house. This may be as soon as her next appointment with him (in May), however, as it stands, she was too weak to stay sitting up for 15 minutes to wait for him to come into the room, and he said if she can't even do that then she's not strong enough to drive and have a good reaction time.

The not-so-good news is that she has been confused lately, worse than usual. I'm going to ask the doctor if we can increase the toxin-clearing medication to clear her head a little more. I wonder if her increased confusion is caused by irony; that her ascites fluid is gone. She weighs less and her other medications would build up more, causing more confusion. She keeps confusing night and day, days of the week, and forgetting things quickly. Today, for instance, she took her PM pills this morning. Last Saturday morning at 8:30 am, she called me because she thought I'd left the house without telling her. I was in bed, asleep, but she thought it was Friday night at 8:30, and didn't actually check my room to see if I was there, so she called me from her bedroom. It is unclear if she ate before her glucose blood test (she was to fast for this, but we're not sure) and it appears that her glucose came back at 95 and her A1C came back over 600. This means that on that particular day, it's difficult to say if she ate before or not, and her blood sugar wasn't bad, but her blood sugar over the last three months has been too high on a regular basis. It's the tea she drinks - she pours an inch of sugar in the bottom of the bottle. I've offered Splenda, but she is hesitant toward change in her life (hint: understatement). But in her confusion, she said she ate at 7 am and we tested her blood around 9 am....then she later said she was mistaken and didn't eat that morning. I really don't know. I can't watch her 24/7 and she often wakes at 3 am for a snack.

We just received another blood test request from the doctor to retest her potassium. It seems it was too low last time, and they want to make sure it is accurate before raising the dose. Too much or too little potassium has dire consequences.

A friend is giving me some furniture today that will hopefully help organize this house a bit. One item is a dresser I intend to put into Mom's room. It will help house her several months-worth of medications and might help her to organize her clothes so that the dining room table is no longer a functional dresser.