Friday, January 13, 2017
An Awful Night at Carilion
It is Wednesday and my first day in the hospital and I got my first dose of chemo (methoprednisone, 500 mg) and I had no real problems with anxiety or jitteriness. Rob thinks that will happen this evening or early morning so we will see. I had an awful morning since by the time they had admitted me and were ready to do the blood work, my valium had worn off and my lidocaine was losing its effect. Finally nurse Amanda got the IV in my right arm (looked better to her) and two minutes later a guy comes in and says he is going to draw blood and I say absolutely not and chase him away. I was not going to be stuck twice in a few minutes but fortunately Amanda was able to get the blood from the iv since I hadn’t had any chemo yet. I did later apologize for both of them and James the night nurse has promised to get me a 2 and ½ mg valium a half hour before tomorrow’s blood work. That should help a lot. I emailed back and forth with my kayak friend and she was wonderful, doing research which seemed to say that my treatment is the best one. Cathy Gallo is going to come visit tomorrow and she is one of the few people I would like to see. Claire was in touch and I may have her come visit in the afternoon as she offered to. Rob is much more optimistic than Dr. Pant and his call cheered me up quite a bit. He thought a vacation south would be a fine thing. Rosemary has also been very kind and she shared a lot about her own kidney experience. I also had a nice chat with Kelly and she was very supportive and that also had a very positive effect. I really do hope to get up to see her. I walked around the hospital quite a bit, probably a couple of miles but I got tired on my last walk a little after nine so I may not walk too much more. I did get my first dose of Cellecept and that hasn’t done anything bad yet. Wednesday continued to go well until about 11:30 pm when I was told that since my roommate had left, I was going to have another roommate. James the nurse said the new patient should be in fairly soon so I said I would stay up until they got him settled. No problem I thought figuring that this guy would go right to sleep. Unfortunately, the new patient didn’t get there until after one and after thy moved out his bed and completely woke me up and when they finally left about a half hour later, the new patient proved to be a problem. He left the light on and had the TV loud, and was coughing loudly and wanted a spit cup. Anyway, after a half hour, during which I read a little and put in my ineffective earplugs, I finally went out to tell James that this wasn’t going to work. He was not that helpful, still saying that I couldn’t get any valium for sleeping (as it turned out I did have a sleeping med order according to Dr. Pant and he was going to make sure it was available tonight). And so I sat in the lounge area, where they said I could use the fold out bed but I had no desire to sleep there since it didn’t look very clean and there were lights and noises. James was no help and eventually walked away from me and I cursed at him that this was fucking ridiculous (which I regretted and apologized later), but he also said, after I asked him if this was good medical care, he replied “Yes, I do” which was silly to say. I finally got a private room (which I didn’t ask for because I knew they were full) and that was such a relief and when the valium kicked in about 3:30 I finally fell asleep and slept till 8:10. I immediately called to talk to a supervisor and though they said one would be coming soon, Chelsea and Ellen didn’t show up until 10 o’clock and though I asked for a nurse to come a couple times, Amanda didn’t come until almost ten, so I had to give myself my morning meds. Chelsea and Ellen were very friendly and I think they saw my side but they are obviously working for the hospital so I think they will be balanced. I got my blood drawn and my second infusion so that was fine. Dr. Pant told me that my numbers had gone up (2.1 to 2.6 but he mentioned that the numbers might need a new more days to go down (something Rob mentioned, that my numbers might go up to 3.0 before going down). Then Claire and I had lunch and took a long walk around the hospital and that felt so good. Dr. Belcher came and asked me about what he should do if I have a heart attack and I agree with him he should try to resuscitate me. Then if asked if I wouldn’t mind seeing a psychiatrist because he thought I had a deeper anxiety (not sure about that) but since I just found out that I have lupus nefritis and that my numbers are still going up and he asked me what to do about a heart attack, shouldn’t I be very anxious. I absolutely think so but I told him I would be glad to talk to someone because certainly during my drive home from my failed Texas vacation, my fear of the pain of the renal biopsy (which was supposed to be from 4 to 10 but ended up about a 2), my anxiety about the results from UVa (which took 8 days to get and were not very good), and my increasing numbers seem to me enough to get anyone on earth pretty anxiety and last night’s unprofessional treatment of me also contributed to my being upset and more anxious. I just want this on record. I understand some of the staff may see things differently but since I am an award winning investigative reporter with over 350 publications and several books out, I think I do a very good job of presenting the truth. If any of the staff want to respond to this, feel free to share it and I will be glad to read their responses and offer counter responses. Let me make it clear that almost everyone has treated me well and the three people who I has problems with I apologized to. I want to single out Abby, Nicole and Amanda.