If you were to cut off your finger, you’d go to the ER and the doctor would say.. yep I see you cut off your finger. The pain you are feeling, the nausea you are experiencing and all the bleeding are definitely because you cut off your finger. Internal medicine seems to be more tricky. After going through many hospital visits with my parents I can say with certainty that I question the science behind internal medicine. Sometimes it is downright frustrating trying to parse the information spewing from the various health care professionals involved in the care process.
This latest episode with my mother’s visit to the hospital has reinforced my thoughts and frustrations on this topic. This will end up being a long post because I am going to go into detail (as much as I can recall) about how my mother ended up in the hospital twice in the last five days and what transpired while she was there. I will admit that some of the issues have to do with how my mother is as a patient, which is an odd term since most patients have very little of it. My mother has problems with short-term memory AND she cannot sit still. That makes for a patient who is constantly moving about and has problems remembering what she is being told. My mom and I had a discussion about her memory issues today when she asked me to be honest with her when she starts losing her mind. I sort of chuckled and told her that might be difficult because I might not know when that happens and that she might have already lost it. I was half-joking and told her that she while she has trouble remember was happened five minutes ago, thankfully she still understand things even if she can’t remember them.
So the story begins on Thursday night when my mother was sitting on the couch filling out Thank You cards to people who came to dad’s memorial. It was getting dark and she needed to turn on the light next to the couch to better see what she was doing. She reached over to the lamp and it was a little further away than she expected and she had to really stretch to get to it. In doing so, she pressed her right side up against the arm of the couch and felt a sharp pain. She sat back up and thought, “Whatever I just did wasn’t good.” She waited a while hoping the pain would subside, but it didn’t so she took a vicodin expecting that it would take care of the pain. After a while the pain was still there so I suggested that she take one of her sedatives to help her relax and get her mind off it. I said that she might have just pulled a muscle and the sedative would help her relax. She took a diazepam pill and waited for that to kick in, but it never did. She took another vicodin and waited some more. After four hours of dealing with this pain, we decided it was time to head to the emergency room. Mom was so upset that anything would derail her cancer treatment. She has been doing so well and hated to think about having a serious problem that would hasten her disease. I tried to ease her mind by telling her that it could be something minor like pulling a muscle, bruising/cracking a rib or having just pressed too hard on her liver, but it did little to calm her down.
We got to the ER and waiting for a couple of hours to get a bed, in the meantime they did triage and drew blood. I told her that if it was serious, she would have been triaged higher and would have a bed already, which is true. That she could take comfort in knowing that the longer she had to wait the less likely that it was life threatening/serious. Unfortunately she was still in pain. We finally got a room and they gave her pain medication which allowed her to relax. They took her for a CT scan and then did an ultrasound on her belly. After a couple more hours she was told that she had gall stones and that her the walls of her gall bladder were thicker than they should be which indicated an infection. The ER doctor said he had spoken with a surgeon who recommended that she be admitted to the hospital and that fluid be drawn from her gall bladder to diagnose the infection. Mom wasn’t happy with the news, but understood what was going on and why she was being admitted. She asked the ER doctor what about her reaching for the lamp would have caused the gall bladder problem. He said that it didn’t have anything to do with it other than to make her aware of the problem by putting pressure on that spot. The explanation seemed odd, but we didn’t have any reason to not believe him (like we do now). So upstairs she went and go checked into her room around 5 am. Later that morning the nurse explained the surgeon ordered a procedure to put a needle into her gall bladder to drain the accumulated fluid. She explain is it a relatively simple and common procedure and that the drain would remain in place for a couple of days. Shortly before the procedure was to be done, the surgeon came in to check on mom. He asked her about her pain, which by this point she was no longer having pain. He poked around her belly and asked her some more questions, typical does it hurt when I press here sort of stuff. He then said, well you have me stumped. You came in with pain, but are no longer in pain and you look good. He said that perhaps the antibiotic had worked well enough that no treatment is needed and decided to cancel the procedure. He said that he wanted to keep her another day or two to get her on a solid food diet starting out with a clear liquid diet and to see how she responds. Keep in mind that this is Friday late morning, about 12 hours after we got to the emergency room.
On Saturday, while I was working, the surgeon checked in on her and told her that he would discharge her on Sunday. She put up quite a stink, insisting that she felt fine and wanted to go home. He gave in and said he would put the discharge order in. She was happy. For a little while anyway. Then mom started to think about it and realized she was being a bit silly putting up a fuss over staying one more day. She replayed the same sort of scenario that had happened with dad and how the second time he went into the ER she wanted him there until he was all better, not just sort of better. So she told the nurse that she would stay the extra day and the nurse told the doctor who then changed the discharge order for Sunday instead of Saturday. When I talked to her later on Saturday she told me what had happened and I was happy and proud that she made the right decision. Sunday came and the surgeon made one more stop by mom’s room to tell her goodbye. We talked about what had happened over the time she had been there, why she recovered so quickly and what to expect when she goes home. He explained that he believes that she had passed the stone on her own. I didn’t realize that you could pass a gall stone so I asked where it goes when you pass it. He explained that it goes through the bile duct into the colon. Makes sense I suppose. He talked about the diet she needs to have, which is a low-fat diet. We talked about how that fits in with her need to maintain weight due to the cancer and he said that she was in a catch 22 situation. That she would have to use her best judgement on the foods she ate and that maintaining weight was indeed important. I read between the lines and heard him say that she would try to eat as low-fat as possible, but that she shouldn’t worry too much about it.
While waiting to be discharged, she still had an IV bag of antibiotic to finish so the nurse suggested that she order lunch. She tried to order a taco from their low-fat menu, but they said that it was too early and that they would not be able to take that order for another hour. She decided to just wait until we left the hospital and stop at one of the Mexican restaurants on the way home to get a taco, which we did. Later that day she was up and about doing things around the house. She drove herself to the pharmacy to pick up the antibiotic prescription the hospital doctor has prescribed. She had some Ensure to drink for a mid-afternoon snack. She then set out on a task to organize all her medications and get rid of the stuff she no longer takes. She asked me to help her with that and after a while she started complaining that she felt ‘funny’ and needed to lay down for a while. I asked if she was in pain and she said there was no pain, so I figured we were just back into the normal mode of cancer symptoms. Sometimes she gets tired and just needs to rest. Later that night I checked on her and she said that she still felt odd and that she made a grilled cheese sandwich, but wasn’t sure if she should eat it. I told her that if she wants to and feels like eating it that she should go ahead. A couple of hours later, in the wee hours of Monday morning, I happened to go check on her and she said that she was really nauseous. I asked her if she took her anti-nausea medication and she said that she had. Just a few minutes later she started vomiting. In between vomit episodes we talked about what we should do. I asked her if she just wanted to wait it out and see if once she gets things out of her system if she might feel better. She agreed and continued to vomit. At one point I looked in the basin she was puking into to see what it looked like and it was pretty much like vomit. She continued like that for about forty-five minutes when she called out to me and said she thinks there might be blood coming up. Sure enough, there was blood and quite a bit of it (at least it was a lot for someone not used to seeing blood in vomit). Panic set in for both of us and I said that we were going to the ER. I asked her if she thought she could get dressed, she was just wearing a nightgown. She said no, so I called 911. The ambulance came and took her to the emergency room at about 3 am.
In the ER they checked her out and the doctor decided to start with an X-ray of her belly. The x-ray results showed no problems, so the doctored ordered a CT scan. The CT scan also showed no obvious problems. The doctor then decided to admit her for more testing. She got into a room and since she was no longer vomiting because of the medication they had given her, stuff started coming out the other end. They gave her medication for that as well and finally liquids were no longer coming out of either end and she was able to relax a bit. The floor doctor ordered a scan that required someone from nuclear medicine to inject her with radioactive dye (that he carried around in a metal case) so that they could get a better look at her gall bladder function. They had to do this scan a couple of times in order to get all the information they needed. When all the scans were done, the doctor told her that she needed surgery and that she could forget having any more chemotherapy. This was very upsetting for my mother for a number of reasons. For starters, the surgeon she had seen on Saturday and Sunday told her that surgery was not an option for her. That she would not survive long afterward. So hearing that she would end up having surgery was shocking knowing the outcome. Add to that shock, this new doctor sans any people skills, basically told her that they would fix her gall bladder but that her cancer would get her anyway. It was overwhelming. I had gone home to sleep and was not there to hear this news. I was anxious to talk with the doctor myself and see what the scoop was. In the meantime I had been leaving messages for her oncologist to get back to me about her upcoming chemo treatment and what we were going to do about that. Things just weren’t making much sense. I was hoping to get to the hospital this morning (Tuesday) before the doctor got there so that I could hear for myself what was going on, but I missed her. Mom said that she was vague on what was going to happen and mom didn’t know if there was still plans for surgery. I asked the nurse if she could get a hold of the doctor and see if she would come back around to talk with me. The nurse said that she had to page the doctor for clarification on an order anyway so she would ask. The nurse paged her three times before getting a response. As per usual, I was out of the room when the doctor called the nurse back and mom talked with the doctor on the phone. The doctor said she was off-duty now and that another doctor would come by to talk with us. So we did was we do best… wait.
The new doctor came in and examined mom. Now this is where things get all strange. The new doctor said, “Look, there is nothing wrong with your gall bladder. The problem is with your liver. I suspect that a tumor on your liver started bleeding when you pressed against it reaching for the lamp. It caused the initial pain and the subsequent vomiting.” I asked him about the blood and he explained that the liver would bleed into the intestines and that would end up coming out both ends. It would also upset her stomach. We were puzzled now and when we asked how the gall bladder came into play he explained that mom’s anatomy has changed because of her cancer. The hardening of her liver has caused the gall bladder to shift to a position below her liver instead of above it. That she has found out the limitations of imagine because what the other doctors were seeing on the various scans was not the gall bladder but rather it was her liver. Mom asked about the gall stones. He said that she does indeed have gall stones, but there were not presenting any issues right now. He said that her gall bladder could at some point become a problem and if that did happen, he would not do surgery on her in her current condition. He explained that in order to do surgery on her gall bladder he would have to lift her liver up in order to get to her gall bladder. Mom asked if he was a surgeon and he said that he was indeed. We asked why she was told that she only had one gall stone and that it had passed. Enter more confusion… He said he does not know why she was told that. He said you do not pass gall stones. He said they are either surgically removed or sometimes they can come out through the drain that they had talked about putting in, but that was rare. I asked why the other surgeon said it had passed and he asked who that was. I told him I could not pronounce the name, but that his name was in the chart. He largely ignored that and said that person was incorrect. Mom asked about chemotherapy and the surgeon said that as long as she wasn’t in the hospital, that he saw no reason that she cannot continue cancer treatment. That it might actually reduce the size of the liver and allow her anatomy to correct itself, which would allow him to do surgery if her gall bladder did act up.
He leaves and mom and I just stare at each other. We are both so confused now. We are getting two different stories from several different doctors and surgeons. Mom said she doesn’t know what to believe anymore. She asked how can she trust any of this. The nurse, who had been there the entire time the surgeon was talking to us, chimed in and said that he was the most respected surgeon in the hospital. He also had going for him that he had spent more time talking to us and explaining things than any other doctor so far. I told mom that we would have to go with our instincts on this and ‘trust’ the one that seems to be making the most sense. However, we weren’t satisfied just leaving it there. Mom had called her primary doctor and I was still trying to get a hold of the oncologist. We thought maybe one of them could help sort things out. The surgeon that had just left said mom could go home, but first she had to get a blood transfusion because her hemoglobin count was too low. That was going to take a couple of hours so we figured that she wouldn’t be going home today, but would be tomorrow. Her primary called her back during her transfusion. He said that he had been keeping up on the notes and mom told him about the most recent surgeon that saw her and that his story was completely different from the other doctors. He said that he had already spoken to the first doctor, that he knew and respected the second doctor and would talk to him then call her back. By 6 pm tonight I decided I might as well head home. Shortly after I got home, the oncologist called me and I talked to him for a while. I explained that we were getting different messages. He said that he had already talked to the first doctor and his impression was that mom had a pretty serious issue going on and agreed that chemo would be stopped. However, he said he knew the second doctor well and really respected his opinion. He said that if we had interpreted what the second doctor said to us correctly that it was good news for mom and he would get tomorrow’s chemo rescheduled for Thursday or Friday after he confirmed with the second doctor. I was starting to feel more comfortable with things until I googled, “Can you pass a gall stone?” and found an article from Cedar-Sinai that said you can indeed pass gall stones. That it happens frequently. That they go into the colon, just as the surgeon mom had seen on Saturday/Sunday suggested. So why did the latest surgeon say that is not possible?
So here we are, mom apparently going to be discharged tomorrow. Meanwhile, I need to find recipes for low-fat/high calorie meals that I can prepare so mom can maintain weight while avoiding gall bladder problems. I am still wondering why she needs to change her diet if there was no gall bladder issue to begin with or was that just a healthy eating guideline that would be best for her long-term health? I am scratching my head hoping that the primary doctor and the oncologist can help me make heads or tails of the past five days. How can I help keep mom’s spirits up when we aren’t sure what issues we are facing? Not to mention feeling bad that if there really is a gall bladder issue and the whole vomiting thing was due to eating the taco and the grilled cheese, why did I tell her it was okay to eat those. Did I make mom sick? So many thoughts running through my head. Add in the sleep deprivation from the last 5 days and things are a mess.
In all the junk I talked about above, I didn’t even get into the little things like how crappy the attitudes and attentiveness was of the hospital staff on Monday. Mom was cleaning up her own mess in the bathroom while the stupid IV monitor alarm was going off for 25 minutes, with 15 of those minutes having the nurse call light on. Finally running around the hallway looking for anyone to help us. When I did find a nurse and asked her to come to the room it was like we were interrupting her day and she didn’t seem phased that the alarms had been ringing for that long or that mom was cleaning up after herself. I didn’t talk about the goose egg they left in her arm when they screwed up a blood draw or the other 2 goose eggs they left in the other arm when they screwed up the IV (bent the needle in her arm, which caused the alarm to ring for 25 minutes). The refusal to use the power port in her chest like they have done for her and my father every other time they had been in the hospital. So many issues with this hospital visit… it’s unnerving.
Well that is the scoop. That is what we have been dealing with the past two days. I apologize for those of you who have called or asked me online how mom was doing and I either didn’t answer or stuttered my way through some half-assed explanation. The experiences I have had with the hospital have had some wonderful moments, but my overall impression is that doctors ain’t got a clue and sort of just bullshit their way through things. Perhaps it is just chance that some people get better. Thank goodness for those precious RNs, CNAs and interns that go the extra mile for their patients. Screw the ones that are bitter and don’t give a rip so long as they keep getting a paycheck.
Well I think that sums up the day. We shall see what fun stuff tomorrow brings!