Pre-Christmas Jitters

Medical Update: Mom's ammonia levels were completely out of control (nearly 200, when they should be under ~80), but the Rifaximin FINALLY kicked in. Last test showed her at 50, and we lowered the dose of the Lactulose (the syrupy liquid that she hates so much...it fills her up so she can't eat food and makes her stomach hurt). We're playing with the dose now; trying to see how little she can take, or if she can completely cut it out, and still keep her ammonia levels low with the new pill. We'll keep lowering the lactulose and testing her ammonia levels and crossing our fingers. In related news, her hepatologist is leaving for another opportunity, so we'll get another one. I say good riddance; his ego barely fit in the room with him. He was a good doctor and very intelligent, but his inflated sense of self stopped him from becoming a great doctor, and most of his notes were written in partial english by residents and were not proofed by him before he signed off on them. Whatever new doctor we get will have one hell of a first appointment, because we'll have to correct him on nearly everything ever written by the past residents. He had a hard time listening and often confused what she said and the residents often wrote the exact opposite of what we told them was happening. I see this as a blessing in disguise. Lose an idiot, gain a mystery. How much worse could a new liver doctor be?

Otherwise, she's generally distressed. It's Christmas time, and she misses her sister, her dog, and our family isn't what one would call "close". We learned today that we can't spend Christmas with any of her grandkids, and the holidays are stressing her out so much that she just wants them over with. We're all having a hard time lately, myself included (I got my own ride in an ambulance and was in the ER twice within 24 hours and racked up another 7 grand bill that I can't pay), and the stress is wearing on us all. She keeps wanting to drive, and she's broken hearted that her PCP would lie to her and tell her she could drive when everyone else tells her she can't (the other doctor in the office laughed when Mom mentioned it, which really hurt her feelings). We're trying to get help in various ways - getting help cleaning/organizing the house, getting myself medical/bill help, and getting us both some mental relief. If someone offered you a way to handle stress better so you can enjoy your life more and be upset less, wouldn't you do it? Nobody's offering, but we really need the help, so we're trying to find it. Just a few more days, and this Christmas business will be over with and things will be a little smoother and we can make the calls we need to make to get the help we need. I haven't been updating this blog because of the stress and lack of time/energy/will to do it, but I'm making the effort. Let's see how long it takes me to update again.

Ammonia Update

About a week ago, Mom had a bout of gibberish. This happens from time to time, but usually for a minute here or a minute there. It's caused by the hepatic encephalopathy (essentially toxic build up on the brain) and comes and goes with her other symptoms of confusion, lack of comprehension, and memory loss. She has had this for over a year - I learned of it's existence through the hospice nurses of last summer. This incident lasted approximately 3 hours, where she could not form words or sentences and continually stuttered. The doctor raised her lactulose dose dramatically and is continuously testing the ammonia levels in her blood until it falls into normal range.

There are several resources online to learn about hepatic encephalopathy. I ask anyone reading this to educate yourself BEFORE contacting my mother. Either she is not comprehending what people are telling her, or they have misinformation. She has been scared, crying, and yelling for two days. Please do not tell her that she WILL go into a coma. Please do not tell her she WILL die from this. It COULD....but in all honesty, she has had this for over a year without a coma or death and the fact that the doctor finally decided to test her (I have asked so many times, I can't even keep count, and I've been denied every single time before now) and treat the condition does not make her health any worse than it was last month or three months ago or six months ago. Also, she has so many other issues that her liver is doing fairly well comparatively and no medical professional believes that her liver disorder will be the cause of her eventual death. It is impossible to help her or to treat her if she is hysterical. Please consider this before giving her information you may not be sure is true. Also, please realize that this a chronic condition that requires ongoing treatment. Her liver doctor has been aware of this condition for several months, even without ammonia levels being tested. Her other symptoms have made it obvious to everyone but her. My point is that this is not something urgent that suddenly happened and everyone needs to freak out about it; exactly the opposite. If it is monitored and treated properly, it can be reversed and simply be something we have to watch out for and not something that kills her. Also realize that the websites often give worst case scenarios and results of hidden/untreated HE, neither of which apply to her case. Please note that she does not qualify for a liver transplant and that her MELD score is 8, down from 10.

Visit the NIH website here.
Visit the WIKI page here.
Learn what a MELD score means here.

July 2011

Apologies, as I thought I updated this last month and I guess I didn't. Mom has been doing much much better since her sister came out from Georgia in early June. The fear I was having over her lack of control over her medication was that she would end up going into a home - which I know she doesn't want to do. I think having her sister here encouraged her to do better and try harder. She is taking her meds on time and paying attention to the dates (so proud of her!!) and she even took them with her when she was out (yes, out of the house...for up to 12 hours at a time!!) with her sister or brother. She was quite active for the ten days that my aunt was here and remained active for about a week after she left. I think it's catching up to her now. She twisted her ankle and bruised it somehow at the end of May and it refuses to heal. She props her knees frequently, but says that propping up her ankle makes her back hurt, so she dangles it downward most of the time, preventing it from healing. She has been nauseous for about a week and is starting to cancel appointments. She has canceled a dentist appointment twice and hasn't seen her mother in over a week and doesn't feel well enough to go today.

She tried to cancel the appointment with her liver specialist yesterday, but it takes months to make an appointment with him, so she went. Her bloodwork came back very good this time. Her AST and ALT levels are in range. Read: they were NORMAL for the first time since 2009. Her Alk phos is down to 158, and the high is 150. Her MELD score (click for more info) is only 8, down from 10, which means her liver is just barely "sick". Her belly is distended - she looks about 4-5 months pregnant. The digital ultrasound of her abdomen indicated there's quite a bit of air and ascites in her belly. The ascites is purely caused by her diet. The doctor's resident took a look at the box label we brought for her shrimp wonton soup (since I couldn't make heads or tails of it) and it turns out that one bowl of soup is her daily intake of sodium. If she eats more than that one bowl of soup in that day, she's already over her limit. He also advised that pickles are very high in salt and that her belly would not be distended if she didn't eat so many salty foods. She argued with him and told him she barely eats two servings and that her belly was caused by chili dogs she ate a month ago with my aunt. The specialist told her that there is no debate and no argument; it's simply reality that her diet is salty so she has ascites. Period. She still refuses to believe this, so she asked for proof and a copy of the ultrasound that shows that she has ascites in her belly. She is addicted to pickles like some people are addicted to crack. She uses phrases like "I've been on the pickles for a long time and I'm not getting off of them!" She eats pickles at night when she is stressed and can't sleep. This is clearly her decision; some people could choose to have a bit of a belly and painful distention if they want salty food that much. The problem lies in the use of water pills to compensate for it. She is already on high doses of two common water pills and if her diet is salty, they get increased to keep up with her. Water pills don't just rid her body of salt - they're called "water pills" for a reason. They dehydrate her. Then she gets into a cycle of drinking a lot of water constantly (Mom hates water and can't eat or drink much in one sitting as her stomach is quite small) or she will end up needing IV fluids again. I'm trying to get her into therapy for the pickle addiction, but I doubt that'll happen any time soon. She doesn't believe in therapy and doesn't believe her addiction is a problem.

Generally her attitude is much improved as of late. Since her sister came (though Mom swears it has nothing to do with that), she has been pleasant and even cracks a joke once in a while. She still has her panic attacks and freak outs, but they are slightly less frequent and she is less angry during the time in between fits. She does dream rather vibrantly and believes things happened that didn't. We tend to let her believe it to be true unless it's a real problem, but it's better not to argue and upset her if we can get away with it. It's nice to get along with her more often and enjoy her company. Her next specialist appointment is in another two months (or it should be, but it never happens on time). I shall update as needed.

Not Going So Well

Doctor's appointment was Monday, and Mom heard (again) that she isn't strong enough to drive. She has lost one pound, which the doctor said isn't so bad. He's even considering the possibility that this could be her new plateau weight and she is leveling out. At least that's what he's telling her now. He actually told her the truth on the driving this time - that the liver doctor said she can't drive at all and until they both agree that she can drive, he won't give her the go-ahead. He also said she can stop the potassium if she eats three bananas a week, but she won't do that. Luckily, she has forgotten all about that for now.

She has had better times. Her mind is not working for her right now. She sleeps through most days, but wanders at night and says she's "starving" all the time. She never knows what sounds good, so we suggest things, and eventually say something that she says yes to. We give her food, or she finds it on her own, but then she falls asleep and doesn't eat. Yesterday, she microwaved herself a frozen mac & cheese meal, but didn't heat it thoroughly so it was still cold in the center. She also burned the paper plate to the glass microwave plate (the part that turns), and then left the mac & cheese on the bathroom counter and never ate it. A short time later, she attempted to reheat some shrimp won ton soup (I can't stop her from eating food she leaves out and finds later...drives me batty). She put the soup on the burnt paper plate in the microwave with the fork in the bowl, and I stopped her just in time before she turned that thing on and started another fire. She clogged her toilet again, and it's Saturday, so I told her to use our toilet until Monday when a plumber won't cost as much. This is the fourth time she has clogged it to the point that we can't clear it ourselves. Even the smallest task seems too much for her; she keeps spilling ice everywhere because she places the bowl in the freezer doorway and forgets to put it back on the shelf before closing the door. At some point yesterday, she spilled chicken noodle soup on her bedroom floor over a span of about 3-4 feet. She didn't tell me, but walked on it and ground the noodles into the carpet.

I watch her with her pills, and it's getting harder and harder to get her to take them. The alarm wakes her up about 70% of the time, but then she gets a drink of water and goes back to bed. This morning, when I told her she had to take her pills, she swore she took them already. It took ten minutes to convince her to get up again and take them, and then she couldn't figure out where they were (in a very clearly labeled pill box that says "TODAY'S PILLS" and the "MORNING" portion was open for her...this thing is made for old folks with Alzheimer's and she still has trouble with it). She gets extremely agitated whenever anyone wakes her up or comes into her room (even if she is awake). Yesterday, boyfriend tried to convince her to take her pills, and he was successful, but he couldn't convince her to take her Lactulose. This is one of the more important medications, since it is responsible for clearing her body of toxins as the liver won't do it. When she skips this syrupy liquid, the buildup of toxins, especially ammonia in the brain, only makes her confusion and lethargy worse and will eventually lead to coma. She's halfway there now.

I don't know what to do with this. I'm cleaning up after her and trying to keep her calm and less...irritable. Her mother isn't calling as much and I'm not sure what's happening with that situation since Hospice became involved. That's good, because it was a major stress inducer for her and her mother would call at all hours and interrupt her sleep. However, I don't know how much longer I can keep Mom at the house in this condition. I have asked for help in the past and nobody does (those who can, won't, and those who would, can't), but I honestly fear she will set fire to the house and kill us all soon. She is accident-prone, walks with her eyes closed, and seems to think silverware in the microwave is just fine. I'm chasing a destructive 6-year old who sleeps all day and is up all night and I don't know how to stop her from hurting herself or anyone else. If the government won't help, and private citizens (friends/family) won't help....what am I to do with this?

I start NAMI next week, as suggested by her therapist. Let's see if they have any ideas.

On a side-note: I was involved in a car accident Thursday afternoon. The kid turned left in front of me because he thought he could sneak by, but he waited until I was on top of him before he tried turning. It's clearly his fault, but he's fighting it (why don't humans take responsibility for their own actions??), so I don't know how long this will take before my car is drivable. In the meantime, I have to use Mom's car. This is frustrating because sometimes she says she wants to drive so bad that she'll just go do it, and we usually disconnect the battery so she can't. Having it ready to be driven makes me uncomfortable, so we've been parking inside the gate in hopes that she would be too weak to open the gate on her own.

Rough Times

Some rough patches lately. Mom's mood has been hard to handle, but after a rather public display, Mom has been trying to be more cooperative. Her stress level is through the roof with her mother's drama. Her mother had surgery on a broken leg and is having problems cooperating with her medical treatment. She calls constantly, even in the middle of the night, and does not allow Mom to sleep. Mom is often so tired that the alarm for her meds does not wake her, even though it is so loud that it can be heard in my bedroom with both of our doors closed. Mom isn't getting adequate rest, and when I wake her for her meds (or when the alarm actually does wake her), she doesn't feel it has been long enough for more meds, assumes the alarm is broken, and refuses to take her medication. She has skipped one of her three daily doses four days in a row. Between lack of sleep and inconsistent medication, especially the medication that keeps her head clear, she is going through a rough patch. I try to calm her and keep things in perspective for her. She has valid fears. She requires more hugs than usual lately. She needs friends to talk to, so anyone who would like to comfort her, please call. Her next doctor's appointment is next week. He will likely tell her to stop eating so many oranges - her binging is up to about 6 oranges a day, which is a lot of acid for someone with GERD. At least it's fruit, but variety would be better for her health. She is trying Special K protein drinks to see how often she can have them without being sick of them. Prayers welcome.

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.

Nothing New

Two weeks on the new medication. Alk phos levels in blood drawn last week were at 615 (normal is below 150). We test her in another seven weeks to give the medication some time to work and see if that number comes down to a normal range.

Her temperament is generally mild and calm. She has a tendency (as most of us do) to be louder and angrier when she is in significant pain, but that seems to be under control lately. She had her survivor's club luncheon (all persons retired from the county and most of them on disability) and was able to be out of the house for a few hours for that and enjoy herself. She has a bit more energy, which is a good sign. However, it seems to be coming out as boredom. I suggested getting out of the house more often and maybe seeing her grandchildren, but she opted for a cable TV upgrade. We will have FIOS at the end of the month. She has been eating fairly well in amount, but has been throwing up bile frequently (and once, actual food, which hasn't happened but twice since her 1995 operation and isn't supposed to be able to happen at all, so it's worrisome). Appointments are made for the primary doc and liver specialist for next month after the second blood test.

The contractor is scheduled to come out Thursday of this week to repair the roof from the tree damage.

Post-vacation Update

Mom was as well as she could be while I was on vacation. Between her confusion and her stubborn nature, she refused to wait for me to call her to make sure she took the right meds. I called every morning and night at the same time, but much of the time, she had taken her meds early. She did not eat any of the food I left for her that she asked me to make, but it appears that my brother came for a few days and gave her food. Her latest obsession is cherry slurpies. The doctor told her that the liver failure can cause a change in taste buds and food she use to like might not taste the same or be appealing to her anymore. She misunderstood this and thinks the doctor told her to cater to her cravings and eat everything that is bad for her. I am not sure when my brother was actually here. She has forbidden my brother from contacting me.

She is in one of her angry modes right now. She is hostile and very confused. I can't keep her from calling the insurance company about the tree incident or our car insurance and if she keeps this up, she will void the policies. I am doing the best I can to handle this correctly and get access to the front half of our house (it is still banned because our neighbor has not removed the remaining portion of uprooted tree that hangs over our front yard/portion of the house), but it is difficult when she is refusing help right now.

I'm hoping for a blood draw tomorrow and she is asking to be tapped, but she doesn't have enough fluid to do so anymore.