Drinking coffee in the evening is a bad idea for me. It was 4:00 this morning before I was able to unwind enough to even think about going to sleep. I was absolutely wired. And I had drank the coffee at 7:00 in the evening. It was awful.
I got up at 8:30 this morning planning to go to church, get a little work done, and then go visit mom in the hospital. After church Donny called me and asked me to come home before doing my work. When I got here he let me know that Bob, a friend of my parents, had fallen off a ladder and had to be taken to the hospital in an ambulance. He then had me call my sister-in-law, Terry, who told me not to drive all the way into town, to take a day and rest. So I went to work with the idea that afterward I'd go home and relax for the rest of the day.
The only problem with my plan was that my mom was at the hospital with Bob, and I was worried about her. I couldn't stop fretting about the fact that she might not be taking care of herself. I was finally able to talk to her and I convinced her that she needed me so that I had an excuse to go watch over her. But that meant that I was off to the hospital.
I took some food with me, since neither my mom nor Bob had eaten since breakfast. Bob was astounded when I pulled some tuna salad and a loaf of bread out of my backpack. Then came the fresh fruit, followed by some bottles of water. I also had my cross-stitching and a book with me. They both laughed about my level of preparedness for the ER, but they were grateful to get something to eat.
It turns out that Bob tore the ligament behind his knee, or something like that. He has to have surgery tomorrow to get the damage repaired. Then he'll be in the hospital for a few more days. Since they were admittiong Bob we decided that we should stay with him until he got settled in his room. The only bad thing is that he's at a different hospital than what Donny and his mom use, so I wasn't able to go check on mom while we waited.
At shift change the nurses hurried up and got Bob moved, to simplify giving report. As he was being wheeled into his room a nurse was passing by and she stopped, looked at me, and then came over and gave me a big hug. She asked if the patient was my dad, so I explained that he was just a friend of the family. She told me that she would be on until 11:00 and Bob would be one of her patients. After she walked away my mom asked me who she was and I had to admit that I didn't kbnow her name, just that she had been Donny's nurse previously. (He stayed in that hospital 1 time and decided that he likes the other one better.) My mom just laughed at the fact that every hospital that she goes to with me I wind up running into a nurse that remembers me and/or Donny.
****DISCLAIMER****
I feel the need to add that the reason that this nurse remebers us is actually a good one. (For a change.) When Donny was staying at that hospital he had a very difficult roommate. The day that Donny went home his roommate got upset at breakfast time. He threw his tray hard enough that his cup dented the floor. The nurse that I ran into tonight came in and was trying to take care of this man and he started hitting and kicking her. Now, this kind of behavior is never okay, but this lady is only a few years from retirement, so it really got to Donny. Although the nurse hollared for help, no one came in. That's when Donny got up and helped this lady get away from the patient so that he couldn't hurt her. For that reason she absolutely loves Donny, and by extension, me. She's probably the only nurse in the area that actually likes Donny, but at least one does.
Sunday, July 13, 2008
MIL update
Mom was scheduled for surgery Friday, but that didn't happen. What was really frustrating for us was the fact that nobody told us what was going on, and nobody seemed to have a clue. She was scheduled for surgery at 2:00 and we were told that they'd take her from the room around 1:00. Around 3:00 a nurse finally told us that her surgery was cancelled, but she didn't know why. The nurse put a call in to the surgeon, who came to the room about an hour later. He told my sister-in-law that a CT scan of the hip had been ordered that morning and that was why she had been taken off the schedule for surgery. He had no clue why it had been ordered and seemed really put out about it. He got mom scheduled for surgery at 1:00 the next afternoon, but explained that because it was the weekend a different surgeon would be doing her hip replacement.
Today (or is it more accurate to say yesterday?) everybody went up to see mom right before surgery, around 11:30. A little after 12:00 the nurse let folks know that surgery had been bumped back to 3:00. At this point we were all getting a little tired of playing this game, since this was the third time that her surgery had been rescheduled. Around 3:00 my sister-in-law, Terry, called the hospital to see what was going on with mom. The nurses told her then that mom had not been taken for surgery yet, that it would be closer to 4:00. Around 4:45 Terry called again to check on mom and was told that they had just wheeled her down to surgery. At this point frustration levels were very high.
When it got close to time for mom to be coming out of surgery we went to the hospital to wait for mom to get done so that we could talk to the doctor. It was around 7:00 when he came out to let us know that he was done. He had a couple of xrays in his hand. He showed Terry the xrays and explained that because he was able to set the hip well with pins he decided not to do the hip replacement. He didn't want to put an 86 year old woman through such a traumatic surgery unnecessarily. He went on to explain that her origional xrays had been read by the radiologist as there being no sign of fracture. According to this doctor the other surgeon had come to him for help yesterday and that's when he had ordered the CT scan. Because it was late in the afternoon before the radiologist read the scan they had been unable to operate yesterday. He was a really nice guy, and he gave the 2 xrays of mom's hip to Terry. When Terry asked about the ever changing surgery schedule he said that he had changed mom's surgery to 4:00 when he came in at noon, because of an emergency surgery that he had to do. For some reason he also made a point of telling us about some piece of paper that mom's PCP had forgotten to sign, and that he had gotten another doctor to examine her and sign it. I walked away happy with the report that he had given us.
That happiness has faded as I've thought things over. I now have a couple of questions. If the other surgeon had asked for his help, and , according to this guy, was there when the CT scan was ordered, why did he seem so put out about it later? He really came across very strongly as seeing the CT scan as an unnecessary test. Also, why did the surgeon not discuss with us his decision to put pins in instead of the hip replacement? We had been told that while pins could be used, there was an increased risk of needing surgery in the future if they were used. Because of mom's age the other doctors had strongly recommended going ahead with hip replacement to avoid the risk of her needing another operation in the future. Shouldn't decisions like this at least involve the patient and her caregiver?
Now that I've had a few hours to think things over I'm really upset about how this surgeon handled things. There's a part of me that wants to accuse the surgeon of purposely getting mom bumped to today so that he would be the one doing her surgery, that way he could do it the way that he thought best. And maybe his way was best, I just think that he should have let us know that he was changing the plan before going ahead and doing the surgery. Especially since, from what he said, he knew when he walked into the operating room that he wasn't doing a hip replacement.
Today (or is it more accurate to say yesterday?) everybody went up to see mom right before surgery, around 11:30. A little after 12:00 the nurse let folks know that surgery had been bumped back to 3:00. At this point we were all getting a little tired of playing this game, since this was the third time that her surgery had been rescheduled. Around 3:00 my sister-in-law, Terry, called the hospital to see what was going on with mom. The nurses told her then that mom had not been taken for surgery yet, that it would be closer to 4:00. Around 4:45 Terry called again to check on mom and was told that they had just wheeled her down to surgery. At this point frustration levels were very high.
When it got close to time for mom to be coming out of surgery we went to the hospital to wait for mom to get done so that we could talk to the doctor. It was around 7:00 when he came out to let us know that he was done. He had a couple of xrays in his hand. He showed Terry the xrays and explained that because he was able to set the hip well with pins he decided not to do the hip replacement. He didn't want to put an 86 year old woman through such a traumatic surgery unnecessarily. He went on to explain that her origional xrays had been read by the radiologist as there being no sign of fracture. According to this doctor the other surgeon had come to him for help yesterday and that's when he had ordered the CT scan. Because it was late in the afternoon before the radiologist read the scan they had been unable to operate yesterday. He was a really nice guy, and he gave the 2 xrays of mom's hip to Terry. When Terry asked about the ever changing surgery schedule he said that he had changed mom's surgery to 4:00 when he came in at noon, because of an emergency surgery that he had to do. For some reason he also made a point of telling us about some piece of paper that mom's PCP had forgotten to sign, and that he had gotten another doctor to examine her and sign it. I walked away happy with the report that he had given us.
That happiness has faded as I've thought things over. I now have a couple of questions. If the other surgeon had asked for his help, and , according to this guy, was there when the CT scan was ordered, why did he seem so put out about it later? He really came across very strongly as seeing the CT scan as an unnecessary test. Also, why did the surgeon not discuss with us his decision to put pins in instead of the hip replacement? We had been told that while pins could be used, there was an increased risk of needing surgery in the future if they were used. Because of mom's age the other doctors had strongly recommended going ahead with hip replacement to avoid the risk of her needing another operation in the future. Shouldn't decisions like this at least involve the patient and her caregiver?
Now that I've had a few hours to think things over I'm really upset about how this surgeon handled things. There's a part of me that wants to accuse the surgeon of purposely getting mom bumped to today so that he would be the one doing her surgery, that way he could do it the way that he thought best. And maybe his way was best, I just think that he should have let us know that he was changing the plan before going ahead and doing the surgery. Especially since, from what he said, he knew when he walked into the operating room that he wasn't doing a hip replacement.
Wednesday, July 09, 2008
Quick Update
Mom saw several doctors today, one of which was the ortho surgeon who's supposed to do her hip replacement today. After evaluating her it was decided to postpone surgery until Friday, although it seems that the decision was due to a scheduling conflict for the doc, rather than a problem with mom. So she's staying in the hospital, heavily medicated, until then. Even though she can't walk she did her best to talk them out of giving her a catheter. She can be so funny sometimes.
A little after 8:00 tonight I called the nurses station for her unit to check on how she was doing. Her nurse had just been in with her and seemed to think that she was rather amusing. Apparently my mother-in-law and her roommate decided that they want their pain medicine to be on the same schedule, that way they'll both get to sleep. Leave it to mom to think of organizing the schedules at the hospital. She is such a character.
My sister-in-law, who takes care of mom, did talk with mom's PCP for a few minutes today. He says that mom will probably be in the hospital for 3 or 4 days after surgery, and then will need to be in a nursing home for 2 or 3 weeks. He also said that we need to be aware that because of her age there is a 30% chance of complications, either before, during or after surgery. We are all well aware that old people with broken hips often don't recover well, but it seems that surgery really is the best option.
Please keep my mother-in-law in your prayers as she goes through this.
A little after 8:00 tonight I called the nurses station for her unit to check on how she was doing. Her nurse had just been in with her and seemed to think that she was rather amusing. Apparently my mother-in-law and her roommate decided that they want their pain medicine to be on the same schedule, that way they'll both get to sleep. Leave it to mom to think of organizing the schedules at the hospital. She is such a character.
My sister-in-law, who takes care of mom, did talk with mom's PCP for a few minutes today. He says that mom will probably be in the hospital for 3 or 4 days after surgery, and then will need to be in a nursing home for 2 or 3 weeks. He also said that we need to be aware that because of her age there is a 30% chance of complications, either before, during or after surgery. We are all well aware that old people with broken hips often don't recover well, but it seems that surgery really is the best option.
Please keep my mother-in-law in your prayers as she goes through this.
More Worries
My sister-in-law called me a couple of hours ago to let us know that my mother-in-law had fallen again. Since my mother-in-law is in her eighties falls are to be expected, and must be taken seriously. When my sister-in-law tried to help mom to get up, mom couldn't stand. After a few calls to the doctor it was decided that an ambulance should be called to transport mom to the ER.
Ex-rays were done and it was discovered that mom has a broken hip. If it were me with the broken hip it wouldn't be such a big deal, but I've seen this be the top of the slippery slope for some elderly people. Tomorrow mom's supposed to have hip replacement surgery to repair the break. Recovery from that is going to take quite a while. I hope that mom has that much fight left in her.
I worry mostly because I'm not convinced that mom does have that much fight left in her. Several times lately mom has gone on and on to me about how she's tired of living, tired of burying loved ones, and she just wants to die. She doesn't want to outlive another child, and Donny seems intent on dying soon. I'm just not convinced that she'll try to recover, I believe that her lack of will to live is what's going to kill her.
Ex-rays were done and it was discovered that mom has a broken hip. If it were me with the broken hip it wouldn't be such a big deal, but I've seen this be the top of the slippery slope for some elderly people. Tomorrow mom's supposed to have hip replacement surgery to repair the break. Recovery from that is going to take quite a while. I hope that mom has that much fight left in her.
I worry mostly because I'm not convinced that mom does have that much fight left in her. Several times lately mom has gone on and on to me about how she's tired of living, tired of burying loved ones, and she just wants to die. She doesn't want to outlive another child, and Donny seems intent on dying soon. I'm just not convinced that she'll try to recover, I believe that her lack of will to live is what's going to kill her.
Monday, July 07, 2008
Worrying
I'm home again, and so is Donny. He got out of the hospital last Wednesday, but we've been staying with my mother-in-law so I haven't really had computer access. Donny's lungs are doing much better now, although they still aren't perfect. This last bout with his breathing finally convinced him that he needs to come up with a plan to quit smoking. I'm working on getting him some nicotene patches, we have high hopes.
It wasn't until I camped out in Donny's room on Tuesday, July 1, that I finally got to meet a doctor. A resident came in to see Donny that he hadn't seen before. One of the first things I did was point out that they were giving him too low a dose of lactulose. The doctor hadn't checked what dose he was on at home, so they gave him the standard dose of 2 tablespoons three times a day. The problem being that he needs 3-4 tablespoons three times a day. I had asked his nurse the day before to point this out to his doctor, but it hadn't been resolved. So the new doctor now feels the need to defend what the other doctor was doing, after a few minnutes we got it cleared up and the dosage was corrected.
The new doctor also was trying to discuss what was going on with us while tiptoeing around the fact that Donny was hallucinating in tghe ER. She said sometrhing about him being sleepy when he came in and I just looked at her and said, "No, he was hallucinating when we came in." She said something to the effect that she was trying to put it nicely. That's when I told her that we've dealt with the encaphalopathy enough times now that there's no more need to put things nicely and she could just be blunt with us. It wasn't until a few hours later that I realized it was her first day of residency. Poor lady. She really was just trying to be nice, I hope I didn't burst her bubble.
Today was Donny's follow up with his PCP. The doc said that all the tests that the hospital ran looked good. I asked him about what to do if the hospital won't keep Donny, but I didn't get an answer. The only thing that I got out of him was that if the ER doc wants to admit Donny and the resident won't then to ask for his attending. But what about if the ER doc says that Donny doesn't need to be hospitalized? And why am I borrowing trouble from gthe future? I suppose that if I ever feel backed into a corner I could try saying that I can't keep him safe at home. I don't know if it'll help, but I feel better if I tell myself that those are the magic words that mean that they have to help. It's not that I want to dump my husband on a poor, unsuspecting hospital, but I worry about not being able to care for him. I worry about a lot of things.
It wasn't until I camped out in Donny's room on Tuesday, July 1, that I finally got to meet a doctor. A resident came in to see Donny that he hadn't seen before. One of the first things I did was point out that they were giving him too low a dose of lactulose. The doctor hadn't checked what dose he was on at home, so they gave him the standard dose of 2 tablespoons three times a day. The problem being that he needs 3-4 tablespoons three times a day. I had asked his nurse the day before to point this out to his doctor, but it hadn't been resolved. So the new doctor now feels the need to defend what the other doctor was doing, after a few minnutes we got it cleared up and the dosage was corrected.
The new doctor also was trying to discuss what was going on with us while tiptoeing around the fact that Donny was hallucinating in tghe ER. She said sometrhing about him being sleepy when he came in and I just looked at her and said, "No, he was hallucinating when we came in." She said something to the effect that she was trying to put it nicely. That's when I told her that we've dealt with the encaphalopathy enough times now that there's no more need to put things nicely and she could just be blunt with us. It wasn't until a few hours later that I realized it was her first day of residency. Poor lady. She really was just trying to be nice, I hope I didn't burst her bubble.
Today was Donny's follow up with his PCP. The doc said that all the tests that the hospital ran looked good. I asked him about what to do if the hospital won't keep Donny, but I didn't get an answer. The only thing that I got out of him was that if the ER doc wants to admit Donny and the resident won't then to ask for his attending. But what about if the ER doc says that Donny doesn't need to be hospitalized? And why am I borrowing trouble from gthe future? I suppose that if I ever feel backed into a corner I could try saying that I can't keep him safe at home. I don't know if it'll help, but I feel better if I tell myself that those are the magic words that mean that they have to help. It's not that I want to dump my husband on a poor, unsuspecting hospital, but I worry about not being able to care for him. I worry about a lot of things.
Sunday, June 29, 2008
A new kind of question.
It's been a long couple of days. Donny hasn't been doing well, and taking care of him has me feeling ran down. The air quality has been bad enough to really mess with Donny's breathing. A few days ago (probably a week or a week and a half ago) he started having a really bad cough. I'm talking about coughing so hard that it's hard to breathe, and it lastging for 15 - 20 minutes at a time. He would cough until he puked. It was awful. So I started giving him some cough syrup. It sometimes helped a little.
And then a few days a go things got worse. On top of the cough Donny's mental function started to decline, he started hallucinating even worse. I kept on trying to treat him at home because I was afraid that the hospital would just send him home if I tried to take him in. Friday night things got really bad. Even then I was afraid that my last hope for help would turn me away, so I didn't take him in. I kept saying that if he wasn't better in the morning I'd take him in.
Around 10:00 on Friday night I was in the office when I smelled something burning. I decided to go investigate, but there was nothing cooking in the kitchen. So, following my nose, I went to the garage. I opened the door to discover that there was a considerable amount of smoke in the garage, and Donny was just sitting there. I hollered at Donny, since he was just sitting in the middle of all that, and then I went looking for the cause. It took me less than 10 seconds to realize that the microwave was running, and appeared to be the source of the smoke. When I opened it up, there sat my favorite mug, once full of coffee, now a smoky mess. It took 2 days of cleaning, but the mug is okay.
Donny obviously couldn't be trusted on his own, so I sat with him for quite a while. He was hallucinating really badly and was quite obviously out of it. Around 2:00 on Saturday morning my mom told me to go sleep, that she'd take a shift sitting with Donny. During this time he came in and tried to wake everybody up because he was sure that my grandma had said somebody had died and he couldn't remember who. He also woke me up to tell me that there were people in my car and I needed to go make them leave. There were a couple other times that he woke me up, but I can't remember what for. Around 5:00 my mom woke me up because she just couldn't deal with him anymore. He had left and had to be chased down the street 3 different times. At one point he had a lit cigarette that he was trying to put in his recliner. When my mom tried to take the cigarette away he hit her.
So yesterday morning I took Donny to the hospital. At 8:00 on a Saturday morning the ER isn't nearly as busy as I'm used to seeing. We waited for less than half an hour for triage, and he went straight to a bed from there. The ER staff wanted to know who had tested Donny's ammonia levels since I knew that they were high. I had to explain that I had said that, based on past experiences, I suspected high ammonia levels. That's when I got the sympathetic smile and understanding nod. It's a universal gesture that reeks of pity. What really shocked me was when his ammonia level came back at 64. That's barely elevated, it in no way is high enough to account for what was going on with his brain. But the ER did find pneumonia in the lower lobe of his right lung, so he was admitted for that. And I came home and slept.
So now we face the tough decisions. At what point can we no longer care for him at home? What resources are available if I can't keep him safe at home? At what point will the hospital take him? What do I do now?
And then a few days a go things got worse. On top of the cough Donny's mental function started to decline, he started hallucinating even worse. I kept on trying to treat him at home because I was afraid that the hospital would just send him home if I tried to take him in. Friday night things got really bad. Even then I was afraid that my last hope for help would turn me away, so I didn't take him in. I kept saying that if he wasn't better in the morning I'd take him in.
Around 10:00 on Friday night I was in the office when I smelled something burning. I decided to go investigate, but there was nothing cooking in the kitchen. So, following my nose, I went to the garage. I opened the door to discover that there was a considerable amount of smoke in the garage, and Donny was just sitting there. I hollered at Donny, since he was just sitting in the middle of all that, and then I went looking for the cause. It took me less than 10 seconds to realize that the microwave was running, and appeared to be the source of the smoke. When I opened it up, there sat my favorite mug, once full of coffee, now a smoky mess. It took 2 days of cleaning, but the mug is okay.
Donny obviously couldn't be trusted on his own, so I sat with him for quite a while. He was hallucinating really badly and was quite obviously out of it. Around 2:00 on Saturday morning my mom told me to go sleep, that she'd take a shift sitting with Donny. During this time he came in and tried to wake everybody up because he was sure that my grandma had said somebody had died and he couldn't remember who. He also woke me up to tell me that there were people in my car and I needed to go make them leave. There were a couple other times that he woke me up, but I can't remember what for. Around 5:00 my mom woke me up because she just couldn't deal with him anymore. He had left and had to be chased down the street 3 different times. At one point he had a lit cigarette that he was trying to put in his recliner. When my mom tried to take the cigarette away he hit her.
So yesterday morning I took Donny to the hospital. At 8:00 on a Saturday morning the ER isn't nearly as busy as I'm used to seeing. We waited for less than half an hour for triage, and he went straight to a bed from there. The ER staff wanted to know who had tested Donny's ammonia levels since I knew that they were high. I had to explain that I had said that, based on past experiences, I suspected high ammonia levels. That's when I got the sympathetic smile and understanding nod. It's a universal gesture that reeks of pity. What really shocked me was when his ammonia level came back at 64. That's barely elevated, it in no way is high enough to account for what was going on with his brain. But the ER did find pneumonia in the lower lobe of his right lung, so he was admitted for that. And I came home and slept.
So now we face the tough decisions. At what point can we no longer care for him at home? What resources are available if I can't keep him safe at home? At what point will the hospital take him? What do I do now?
Wednesday, June 25, 2008
More Questions
Donny saw the GI doc yesterday. He said that Donny's bloodwork looked good. He also said that if Donny would take care of himself he could live for several more years. He talked a lot about the need for Donny to quit smoking. He talked to Donny about how the various systems in your body are all linked together and when one is doing poorly it puts additional strain on the others. It all made sense, but we'll see if Donny actually quits smoking.
Of course even if Donny does quit smoking he'll never quit drinking. I really thought that he would after the scare he got last year, but it only lasted about 6 months. Of course, the doctors don't know that, they all think that he's still on the wagon. I know that it's wrong to let Donny get away with lying to his doctor's, but if I speak up he simply won't allow me tyo talk to his doctors in the future, not to mention what it would do to our relationship. So I go on covering for him and hating myself for it.
And now, since he'd been back to drinking for a while when these tests were ran, he sees the bloodwork as proof that the drinking isn't really hurting him. There will be no convincing him otherwise. And since he sees the drinking as a nonissue it will just get worse. There are times when I wish that I had listened to my friend when she warned me not to marry him. Being married to an alcoholic is not easy.
The thting that I can't help wondering is if these tests could be misleading. I know what Donny's like day-to-day and I don't see how he could be in as good of shape as this doctor says. A few years ago Donny saw a doctor who told us that the numbers on the liver test don't really mean a whole lot. She said that somebody's tests could come back barely off and they could have severe liver damage, whereas somebody else's tests could come back way off and they could have barely any liver damage. She said that all the tests really told them was whether or not there was damage to the liver. But she was a resident, and no other doctor has said that, so I wonder if it's really true.
I also wonder if I should try to demand that a liver biopsy be done. One's never been done and I've been reading that it's the only way to have any definitive answers about what condition the liver's in. I asked about biopsy one time before and I think that I was told that they only do that if you're trying to get on the transplant list. I don't know if that's an insurance issue, standard practice, or erroneous thought. I'm just not sure. And of course I don't come up with all these questions until after his appointment, and he doesn't see the GI doc for another 6 months. I could ask his PCP, but I'm pretty sure that he'll tell me that I need to take it up with the GI doc. I'll probably ask the PCP anyway, because I find it easier to talk to him.
I wish that there was a handbook for liver disease. I wish that somebody could say that it starts at symptom A and in 6 months to a year progresses to symptom B. And then we'll see symptom C, which is an indicator that symptom D isn't too far off in the future. I do much better when I know what's coming. I need to know what to expect next so that I can prepare for it. When I look online I can find a list of symptoms, but does everybod always get all the symptoms? And at what point can you be fairly sure that you've skipped one? Does the fact that Donny hasn't had anymore problems with fluids draining off his liver mean that it's not going to happen? Because what he went through was very light compared to what we were told to expect for that. Or is that yet to come? Does the fact that it hasn't happened yet mean that I'm being overly dramatic in my assessment of how bad he is? I thought that the ammonia levels being this much of a problem was something that just happened at the end. Am I wrong? Where are all these answers? Why can't anybody tell me?
Of course even if Donny does quit smoking he'll never quit drinking. I really thought that he would after the scare he got last year, but it only lasted about 6 months. Of course, the doctors don't know that, they all think that he's still on the wagon. I know that it's wrong to let Donny get away with lying to his doctor's, but if I speak up he simply won't allow me tyo talk to his doctors in the future, not to mention what it would do to our relationship. So I go on covering for him and hating myself for it.
And now, since he'd been back to drinking for a while when these tests were ran, he sees the bloodwork as proof that the drinking isn't really hurting him. There will be no convincing him otherwise. And since he sees the drinking as a nonissue it will just get worse. There are times when I wish that I had listened to my friend when she warned me not to marry him. Being married to an alcoholic is not easy.
The thting that I can't help wondering is if these tests could be misleading. I know what Donny's like day-to-day and I don't see how he could be in as good of shape as this doctor says. A few years ago Donny saw a doctor who told us that the numbers on the liver test don't really mean a whole lot. She said that somebody's tests could come back barely off and they could have severe liver damage, whereas somebody else's tests could come back way off and they could have barely any liver damage. She said that all the tests really told them was whether or not there was damage to the liver. But she was a resident, and no other doctor has said that, so I wonder if it's really true.
I also wonder if I should try to demand that a liver biopsy be done. One's never been done and I've been reading that it's the only way to have any definitive answers about what condition the liver's in. I asked about biopsy one time before and I think that I was told that they only do that if you're trying to get on the transplant list. I don't know if that's an insurance issue, standard practice, or erroneous thought. I'm just not sure. And of course I don't come up with all these questions until after his appointment, and he doesn't see the GI doc for another 6 months. I could ask his PCP, but I'm pretty sure that he'll tell me that I need to take it up with the GI doc. I'll probably ask the PCP anyway, because I find it easier to talk to him.
I wish that there was a handbook for liver disease. I wish that somebody could say that it starts at symptom A and in 6 months to a year progresses to symptom B. And then we'll see symptom C, which is an indicator that symptom D isn't too far off in the future. I do much better when I know what's coming. I need to know what to expect next so that I can prepare for it. When I look online I can find a list of symptoms, but does everybod always get all the symptoms? And at what point can you be fairly sure that you've skipped one? Does the fact that Donny hasn't had anymore problems with fluids draining off his liver mean that it's not going to happen? Because what he went through was very light compared to what we were told to expect for that. Or is that yet to come? Does the fact that it hasn't happened yet mean that I'm being overly dramatic in my assessment of how bad he is? I thought that the ammonia levels being this much of a problem was something that just happened at the end. Am I wrong? Where are all these answers? Why can't anybody tell me?
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