We left for the hepatologist at 2:30 pm Tuesday and didn't get home until 8 pm. The liver specialist is over an hour away and we weren't seen for our 4 pm appointment until 5:30 pm. Turns out there was a mystery diagnosis that wasn't given enough time in the schedule and that patient will likely be blind in a few days and for the rest of his life. Reminders of common blessings (like sight) make waiting easier.
The hepatologist said the blood tests indicate that Mom has a lot of salt in her system that isn't leaving. This means that her diet is too salty; she's breaking the strict low-salt 2000mg Na max per day, and this is the source of her ascites fluid as of late. She's looking six months pregnant again, and on her small frame, it's more obvious. He increased the dosage of her water pills and is considering a liver biopsy. They tried a trans-jugular biopsy when she was in the hospital in October of last year, but it failed due to a bizarre curvature in the artery. The guide wires kept curling on themselves, and they couldn't get past one of the organs down to the liver. They won't go through her abdomen with this much fluid or it could cause an infection. If the fluid goes down, they can go through the belly much easier than the neck, but it'll take time.
The doctor said that if it wasn't for Mom's high-salt diet, she wouldn't have ascites, and it's essentially the biggest complication she's experiencing from the liver failure. We are currently looking at her diet and trying to figure out what is so high in salt that it's tipping her over this much. The english muffins she's been downing and the tuna with mayo sandwiches she makes from them aren't that high in salt. The only thing we can guess is the egg drop soup and cream cheese wontons she's been getting from a chinese restaurant lately. She's been downing this soup like crazy lately and the doc says that restaurant soup is worse than canned soup, and canned soup is too high in salt for her to eat (except the low-sodium versions). They actually wrote it in the doctor's notes: "patient advised to stop eating restaurant soup". I guess the stuff is that bad. Who knew? Mom has agreed to stop buying the soup, but she is insisting on finishing the soup she already bought and froze (5 containers at once, froze 3 at the time, and I think she only has one left...). She is having problems coming up with low-salt or salt-free foods that sound appetizing to her.
The primary doctor previously said they would try to get her the Aciphex for her acid controller medication and push it through the insurance for approval. They haven't done that yet, and the samples they gave ran out. They told her Tuesday that they would set aside more samples for me to pick up, and then told her today that they gave them away instead. She will be on Prilosec until we can afford to put her on Aciphex. Seeing as how I'm still unemployed, and we're not sure what the insurance is changing to next year (her retirement group plan is being dropped by the current company and it's unclear what will really happen with the new company and plan), I'm not sure that she will be on Aciphex any time soon.
She will be 54 years old tomorrow. My boyfriend and I plan on taking her out to wherever she wants to go, if she feels up to it. It may well be a lovely dinner from Red Lobster enjoyed from the comfort of her own bed.
Thursday, November 18, 2010
Thursday, November 11, 2010
Confirmation
I spoke with Mom's doctor's office and confirmed some of the information she gave me. She did have an old, healed rib-break on the x-ray, and her alkaline phosphatase level was extremely elevated. The nurse said that her BUN is high normal and her albumin levels were below normal, but higher than they've been in quite some time. Mom thinks this means she is no longer dehydrated or malnourished. These results are marked improvements on her previous blood levels, but they do not mean she is healthy. The pre-albumin level is more indicative of recent health and I will ask that to be added to the next bloodwork they draw. Mom has since told me something confusing about them retesting the blood and her alk phos wasn't as high, but when I asked if it was a retest on the same bloodwork (such that the first results were mistaken), she said no, but she hasn't had any more blood drawn. I don't know what she thinks happened, and when I ask her, she is too tired to explain and becomes frustrated with nobody understanding her. I'm sure I'll speak to the doctor's office again soon, and I'll ask if they know what she's talking about at that point.
Her doctor is trying to get her on Aciphex again. This is the medication that controls her stomach acid. She has been on every medication at various doses over the years, and Aciphex is the only one that worked (and at twice the FDA-recommended dosage). Her insurance stopped paying for it January 1, 2010, and we haven't had the money to pay for cash for it. It's about $800 per month for this particular medication if you pay cash. She has been on Prilosec this year, and they raised the dosage with no effect, so the hope is that we can petition the insurance to pay for the medication seeing as how nothing else works for her. Oftentimes, because of the backwards sort of way Mom's internal organs work, antacid medications cause her stomach to produce more acid than nothing at all. Aciphex is the first medication that has worked on Mom's GERD in years, so hopefully we can get her back on it.
At this point, it is up to Mom if she wants to be tapped again. Paracentesis is a procedure that removes the ascites fluid from her belly, which will lessen the pressure and make her more comfortable, but it is generally avoided if possible. The more you tap. the more often you need to be tapped and this makes doctors uncomfortable. It is not a good cycle to get into and doctors hold off on this until it is absolutely necessary. There is also a risk of infection associated with tapping and Mom has a barely-existent immune system.
Mom started to refill her own medication box two weeks ago. I check it for her to make sure she has the right medications and dosages in the right time slots. She gets a few things confused sometimes, but it makes her feel more in control of her own medicine and medical care and I make sure whatever mistakes are corrected. It seems to be a good system so that she feels more in control but doesn't suffer from mistakes she might make, which relieves the rest of us from worrying about what she's taking. She is also logging everything she takes and she agreed to start logging her pain and sleeping meds as well. This reduces the chance that any medical issues she has in the future would be misdiagnosed as overdoses and indicate inappropriate treatment, and would easily identify an overdose if she did.
Her birthday is next week, if anyone is interested in calling and wishing her well. She always says she hates her birthday and flowers and attention, but in truth, it makes her feel loved. We will be taking her out to a lunch/dinner if she feels up to it. It's always hard to make someone feel good when they always feel so physically bad. She will be 54.
Her doctor is trying to get her on Aciphex again. This is the medication that controls her stomach acid. She has been on every medication at various doses over the years, and Aciphex is the only one that worked (and at twice the FDA-recommended dosage). Her insurance stopped paying for it January 1, 2010, and we haven't had the money to pay for cash for it. It's about $800 per month for this particular medication if you pay cash. She has been on Prilosec this year, and they raised the dosage with no effect, so the hope is that we can petition the insurance to pay for the medication seeing as how nothing else works for her. Oftentimes, because of the backwards sort of way Mom's internal organs work, antacid medications cause her stomach to produce more acid than nothing at all. Aciphex is the first medication that has worked on Mom's GERD in years, so hopefully we can get her back on it.
At this point, it is up to Mom if she wants to be tapped again. Paracentesis is a procedure that removes the ascites fluid from her belly, which will lessen the pressure and make her more comfortable, but it is generally avoided if possible. The more you tap. the more often you need to be tapped and this makes doctors uncomfortable. It is not a good cycle to get into and doctors hold off on this until it is absolutely necessary. There is also a risk of infection associated with tapping and Mom has a barely-existent immune system.
Mom started to refill her own medication box two weeks ago. I check it for her to make sure she has the right medications and dosages in the right time slots. She gets a few things confused sometimes, but it makes her feel more in control of her own medicine and medical care and I make sure whatever mistakes are corrected. It seems to be a good system so that she feels more in control but doesn't suffer from mistakes she might make, which relieves the rest of us from worrying about what she's taking. She is also logging everything she takes and she agreed to start logging her pain and sleeping meds as well. This reduces the chance that any medical issues she has in the future would be misdiagnosed as overdoses and indicate inappropriate treatment, and would easily identify an overdose if she did.
Her birthday is next week, if anyone is interested in calling and wishing her well. She always says she hates her birthday and flowers and attention, but in truth, it makes her feel loved. We will be taking her out to a lunch/dinner if she feels up to it. It's always hard to make someone feel good when they always feel so physically bad. She will be 54.
Friday, November 5, 2010
Chest X-Ray and Bloodwork Update
Mom had a doctor's appointment, chest x-ray, and bloodwork on Wednesday. Mom spoke to her doctor's office today and gave some information. I will confirm with the nurse on Monday to make sure, but this is what I'm getting from Mom:
~She has a kidney infection which will be treated with antibiotics. This is due to having a UTI that went untreated.
~Her alk phos level (remember that normal is under 300) is about 1300. This is indicative that her liver may be getting worse. The level fluctuates normally and it has been this high in the past and come back down. The doctor is recommending a visit with the liver specialist. I made an appointment for her with the hepatologist for next week.
~They found evidence of a broken rib that had healed. I'm guessing this is likely when she fell (back around February, if I recall) and refused treatment. She said it felt like she broke a rib, but refused to let me take her to the hospital and when I called out a medic, she told them to leave. At the time, they said her mental capacity was "borderline" and they didn't want to be sued, so they could not force her to get treatment.
~She is no longer dehydrated or malnourished.
I will speak with the nurse next Monday (the doctor's office is closed now) to confirm this information and find out what to do about her ascites fluid. She looks pregnant again and the pressure makes everything more difficult for her, but they have yet to indicate any kind of treatment or plan of action for it. They simply told me to put her on water pills at exactly the dosages she's already taking regularly. Clearly, that's not working as we would like it to, so I need to clarify.
~She has a kidney infection which will be treated with antibiotics. This is due to having a UTI that went untreated.
~Her alk phos level (remember that normal is under 300) is about 1300. This is indicative that her liver may be getting worse. The level fluctuates normally and it has been this high in the past and come back down. The doctor is recommending a visit with the liver specialist. I made an appointment for her with the hepatologist for next week.
~They found evidence of a broken rib that had healed. I'm guessing this is likely when she fell (back around February, if I recall) and refused treatment. She said it felt like she broke a rib, but refused to let me take her to the hospital and when I called out a medic, she told them to leave. At the time, they said her mental capacity was "borderline" and they didn't want to be sued, so they could not force her to get treatment.
~She is no longer dehydrated or malnourished.
I will speak with the nurse next Monday (the doctor's office is closed now) to confirm this information and find out what to do about her ascites fluid. She looks pregnant again and the pressure makes everything more difficult for her, but they have yet to indicate any kind of treatment or plan of action for it. They simply told me to put her on water pills at exactly the dosages she's already taking regularly. Clearly, that's not working as we would like it to, so I need to clarify.
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