2007/03/30 Everything Starts to Catch Up
Here I was, just past the 120 day mark, which I thought was a significant achievement. Most of my days are spent sleeping and watching TV. I had an inguinal hernia that was problematic but manageable versus seeing a doctor who was sure to lecture me on other issues. I sure slept a lot! I had been told years ago that I had “end-stage liver disease” but didn’t really know any of the symptoms. This condition never really registered in my mind while I was still using (obviously). I still didn’t realize just how messed up my liver really was. I was beginning to feel worse and worse—very much like I was experiencing a continuous detox! Finally I arranged for Scot [#2 son, USMC Retired] to get me to a doctor to try to figure out what was going on. I was sleeping 22-23 hours a day and not able to eat or drink anything without vomiting it all back up. I’m pretty sure my family thought I was using again. It was really worse than detox! My doctor ordered some blood tests and changed some of my prescriptions. I went home and had one of my worst nights ever. The following day I was making arrangement to try to go to the hospital when the lab called and said to report to the emergency room ASAP! Everything was already a blur in my mind and I really was experiencing an “out-of-mind” event. They told me I was in the midst of a cardiac event. Scary!!! My Transplant Journey Page 3 The following is the gist of an email my wife, Prudence, wrote to my brothers and sisters to try to let them know what was going on: He went to the doctor on Friday after feeling lethargic and just not being able to do anything other than sleep for the past couple weeks. Scot went to the doctor with him and they did a bunch of lab work. He got a new prescription for his insulin (much cheaper than the other two that he had been on before these.) These two new ones are $75 & $40 for each month. One of the old ones was over $300 per month. That’s PART of why he’s not been taking them for almost two months. Anyway he had started throwing up after he got home from the doctor so he couldn’t eat anything, which meant he couldn’t take his insulin because he had to take it with food. He decided he’d just go to bed and start on the insulin in the morning. Well, every time he was up in the night and tried to drink something, he threw it back up. He woke me up in the middle of the night once to help him when he was getting sick and I asked him if he thought we should go to the emergency room. He said no, maybe at 5AM – he just wanted to sleep a little more. In the morning I got a call on my cell phone (I don’t know how they got that number) from the doctor’s office saying they wanted him to come in because they had gotten his labs back and needed to see him. We started getting ready to go and they called again and said we needed to go straight to the emergency room and have them call the doctor’s office and they’d give them the lab results. We went there but unfortunately it was busy for a change. On the fortunate side, I have a friend who cuts my hair who’s also a tech in the ER and happened to be on duty–it helped to have an inside contact. I had never seen a doctor come into the examining room that fast before!! Plus he was the head of the ER Dept. (our lucky day, somewhat.) Anyway, they did all kinds of blood work and EKG’s, etc. His blood insulin level was so high that it was higher than the meter registered and he was so dehydrated that they had to put about 7 IV bags of fluid in him – they were doing one in each arm, dripping fully open. They were faxing EKG’s back & forth to his cardiologist (who he had just seen for the first time last week.). She was the on-call cardiologist that day but she was at her office in Menomonee Falls in the morning. She arrived in the ER after 12:30PM. The ER doctor thought the signs were there (enzyme-wise and EKG-wise) that he was in the throes of an impending heart attack. GREAT!! I tried to stay cool. The cardiologist ordered an echo-cardiogram and watched it being done (I watched it too.) She was trying to decide if she needed to do heart catheterizations right then or if she could wait until his diabetes and hydration were stabilized. She decided his heart was strong except for one of the back heart muscles that seemed a little sluggish but she didn’t know if that was from the other factors (critical diabetic condition and dehydration) or if the heart’s problem was Atrial Fibrillation1, which he had last November. She decided to wait until he was stabilized. The ER doctor had determined early on that he would need to be in ICU for several days. We went down to my sisters because he would just sleep all day anyway. We received a call while we were down there that he had been moved out of ICU and to his own room. That was a good sign – it was much earlier than expected. I heard from Scot today. He went to see Dennis. He is feeling pretty good and they are not going to do a heart catheterization after all – they decided to try to handle it with medication for now. All I remember is being in a state of confusion and pain. Doctors and nurses seemed to be everywhere all at the same time. I seem to remember that they gave me morphine to ease my pain and to get me to relax. I could be wrong on this medication but that is what I recollect. I dozed off and pretty much “checked-out” for many days. I had slipped into a hepatic coma caused by Hepatic Encephalopathy2. During this period of time I many times felt I was having lucid thoughts but was not able to communicate with “the outside world”. I could have sworn that I had been transferred to two different hospitals, one of which was in Kentucky. I know there were issues with my diet and that the nurses and my family tried many times to get me to eat—I don’t think I often did. Another recollection was of the staff, probably physical therapy people, trying to get me to walk but I had no control of my own muscles. I couldn’t even lift my arm yet alone balance on my feet. Next is a note that Prudence wrote to a friend after a week or two of my being in the hospital: Sorry that I haven’t called but Dennis is still in the hospital. Last Wednesday he went back to ICU with super low blood pressure. Then they had to drain fluid that had been collecting in his belly and have it checked. It was peritonitis3 which is an infection. (Most likely caused by his deteriorating liver) Now he’s back in a regular room (since Saturday afternoon). We’re just waiting for the antibiotics to work. He’ll probably have to be on them when he comes home too. | All I remember is being in a state of confusion and pain. Doctors and nurses seemed to be everywhere all at the same time. I seem to remember that they gave me morphine to ease my pain and to get me to relax. I could be wrong on this medication but that is what I recollect. I dozed off and pretty much “checked-out” for many days. I had slipped into a hepatic coma caused by Hepatic Encephalopathy2. During this period of time I many times felt I was having lucid thoughts but was not able to communicate with “the outside world”. I could have sworn that I had been transferred to two different hospitals, one of which was in Kentucky. I know there were issues with my diet and that the nurses and my family tried many times to get me to eat—I don’t think I often did. Another recollection was of the staff, probably physical therapy people, trying to get me to walk but I had no control of my own muscles. I couldn’t even lift my arm yet alone balance on my feet.
Next is a note that Prudence wrote to a friend after a week or two of my being in the hospital: Sorry that I haven’t called but Dennis is still in the hospital. Last Wednesday he went back to ICU with super low blood pressure. Then they had to drain fluid that had been collecting in his belly and have it checked. It was peritonitis3 which is an infection. (Most likely caused by his deteriorating liver) Now he’s back in a regular room (since Saturday afternoon). We’re just waiting for the antibiotics to work. He’ll probably have to be on them when he comes home too. (At least NOW they’re talking about him coming home! Last week the nurse was telling me that I needed to talk to him about a DNR order! Man, it’s scary! Thank God for Brandon [#3 son] and Scot. It’s good to have them so close! Christopher [#1 son] doesn’t hear half of the stuff because I’m just too tired to call him when I get home from the hospital! I talked to Dennis’ brother, Terry, the doctor, and he will talk to the Dr.’s for us and translate to us. All we can do is wait and try to be patient and try to keep Dennis patient and coherent! It’s very strange and scary what serious infections and antibiotics can do to your brain. Half the time he’s in another world. The doctor says it’s normal. I do remember being talked to about completing a DNR (Do Not Resuscitate) order. I know that I eventually did sign one which has subsequently been nullified. I also completed Power of Attorney-Health Care advance directives authorizing Prudence and Scot to make health care decisions for me. 2007/04/20 - Heartland Recovery Center Eventually there was not much more that the hospital environment could do for me. I came out of the coma after the HE stabilized. This meant that I was awake more often but still not able to take care of myself. Once I was able to at least feed myself, even if I didn’t eat much, I would be moved to a rehabilitation facility. I could barely stand by myself and could not walk. I remember it was a Friday after lunch when I was released from the hospital to check in to the center. There was an issue with my “reservation” so it took a long time to be admitted. I had an interview with the physical therapy staff but was not able to be “worked” to determine what sort of therapy I would be able to use. I got a personal initial therapy test the next morning. I was starting to get a minimum amount of movement and could painstakingly operate a wheel chair. At first, it took me 20-30 minutes to get from my room to the dining room. I couldn’t even get out of bed by myself because I couldn’t move my legs. I developed severe edema in my ankles and feet which prevented me from wearing shoes. Both of my feet became so swollen that they “popped” forming ulcers on the top of each foot. I also had extreme back pain for which the staff doctor prescribed an unknown pain med. The length of time that it took to get back from the dining hall increased dramatically as I now would “pull over” to the side of the hall to take a nap, many times more than once on each trip. Even though my appetite was coming back, my diabetes was not well managed. I often had hypoglycemia (low blood sugar) in the middle of the night. I started requesting an extra snack to be left by my bedside to be able to manage these crises myself. At first they would not leave extra food such as a banana and a sealed juice cup, but eventually, after several successive nights of incidents the night staff gave in. In retrospect I didn’t understand why my insulin dosage wasn’t changed. By about the third week of May I became particularly frustrated with my sugar levels because of the limited staff in the middle of the night and the poor response time when I tried to use my “call button”. The lack of response eventually led to an incident that caused me to be transferred back to the hospital. During the previous day, I had participated with the physical therapy staff in cooking the lunch meal with 3 or 4 other residents. The meal was a salad and then spaghetti with meatballs. For desert we had strawberry shortcake which was really angel food cake with cool whip and strawberries. I actually went hyperglycemic (high blood sugar) during the night. I don’t know how the staff became alerted about my condition as I had passed out and was unresponsive. Prudence wrote the following email to Christopher whose family lives about an hour away from us: I just wanted you to know that Dennis is in the hospital again. Scot & I went over to see him last night at 6:00PM to help him with dinner and he was gone. We found out from Rick, his room-mate that he had been taken to the hospital the night before. Rick said he woke up and thought he was dreaming, but it was the nurses saying that Dennis was unresponsive. Nobody called us so we were shocked, to say the least, that he was gone!! They said they couldn’t reach Scot on his phone. (He had it turned off while he was at the VA Hospital in Madison doing his sleep-study. There were no messages on his voice mail though.) They claimed they didn’t have any other numbers. Later, I discovered a voice mail on Dennis’ cell phone that had been in his nightstand, next to his bed! They said they were taking him to the hospital and left no number to return – it was at 11:30PM that night.) Anyway, we went to the hospital and found him in a room (not ICU at least) He is kind of out of it again. We fed him dinner and he ate most of it. That was a good thing – that’s what they need him to do is to eat and get his strength back. His sugars were high again too. His eyes look pretty vacant. Things need to be repeated a couple times for him. |