8/26/00 I was told by Dr. J that I had an infection of undeterminable origin. I was put on Vancomiacin (2 hour drip every 12 hours) for the infection. Fever continues.

Monday, I thought. I can just go home on Monday. 

8/27-8/28/00 I was emotionally beginning to break down because I could not get an answer as to when I could go home OR why I was getting sicker in the hospital. Monday had come and gone and I was still there. Dr. J came in twice to see me and both times picked up my PEOPLE magazine to comment on the kinds of literature I was reading instead of addressing my concerns. He told me, "sometimes we come into the hospital and get sicker." We asked if the cause of the infection could be the JP not working properly. We reminded the doctors that the amount and color of fluid were inconsistent. Sometimes there was no fluid at all, just a thick yellowish gunk. We expressed concern the drain was clogging indiscriminately. Dr. J said that was not uncommon. Dr. Tracy, a resident, inspected the drain, unclogged it and instructed the nurses to keep it monitored. I was also (painfully) administered Potassium. I was put on 1.0 mg Coumadin for the portal clot.

What do WE know? We were grasping at straws. WHY was I still there? Dr. Teperman said I'd be home by Monday night!

8/29/00 I was visited by an infectious disease doctor. In the 5 minutes I saw him, I was told that I had contracted a "difficult" infection and that the Vancomiacin was a very strong drug against hearty infections. Later that day, my JP was clogged again. A resident doctor, who had such a poor command of the English language we had great difficulty communicating with her, was working for the transplant unit (we referred to her as "the Russian nurse"). She was told to unclog it. She did not understand how, nor did she possess the physical dexterity to do it even after being shown how. She made a few (painful!) attempts and after 10 minutes, Dr. Tracy came and did it herself. J O  (my social worker) passed my room and we called her in to ask her if she knew anything about my case. She did not. She told B and me how things at the transplant office were "very busy" and how even "friends, not even relatives are actually being considered for transplant now." Then she told us she was going for a massage. (1.0 Coumadin)

8/31/00 The hospital was setting up for a nurse to come to our house and give me IV Vancomiacin 2x per day. I was sent home at 7 pm on 1.0 Coumadin, Vancomiacin and was told I could resume Tylenol w/Codeine for the pain. My fever was about 100 and the JP was STILL not draining properly. It was inconsistent in color and amount of discharge.

9/1/00 I was visited by Aprea Home Health Care and shown by a nurse how to administer the Vanco drip to myself. I had been feeling weak, but ok, and had been resting on the couch most of the day. B and I went to the mall at 5 PM to walk around there and to get out of the house. After 15 minutes at the mall, I experienced sudden abdominal discomfort and began to vomit. B brought me home and I immediately took Tylenol with Codeine, but the pain was unrelenting and worsening. B called the hospital and was told by the service that we should expect pain and that they would only contact the doctors in an emergency. B explained that this was much worse pain than the usual pain and that it WAS an emergency. The person at the other end of the line said she would call the doctor and have him call us. After waiting a few minutes and seeing me writhe in agony, vomiting, crying and terrified, B called transplant back and told them he needed to talk to a doctor right away. Getting nowhere and fearing for my life, B told the service he was taking me to the emergency room and to have the doctor call him there. B rushed me to Somerset Medical Center. Once at Somerset Medical Center, we explained to the staff about the surgery at the hospital, that something had apparently gone wrong, possibly with the JP. Finally, Dr. M called and spoke to B. B explained the situation and asked Dr. M to speak with the doctor who was treating me now. Dr. M would not even talk to the other doctor. He simply said "her JP is probably clogged again, have them give her Demerol and bring her back to the hospital". Someone from transplant would meet us at the hospital Emergency Room and bring me back to transplant wing. I was given 4 doses of Demerol at SMC. This relieved the pain and sedated me. B and SMC staff placed me in B's car and he took me to the hospital Emergency Room as fast as possible. The Demerol was good for about three hours and B was afraid if we hit traffic there would be no way to get help. We arrived at the Emergency room at the hospital. There was no one there from transplant to see us. The pain was coming back as the Demerol was wearing off. I curled in the fetal position on chairs in the waiting room. B cut to the front of the people in the waiting room to talk to the triage nurse to explain the urgency of our situation. That man quickly took my vitals and showed B the back way to transplant. I was admitted. I was in agony and my belly was distended and hard. I was taken to a room, administered more Demerol and Dr. Tracy unclogged the JP. Once the clog was gone, 3 full bulbs of fluid drained out in a gushing fashion. The abdominal pressure was gone, but the pain and swelling of the abdomen persisted. An IV for Vancomiacin and Maxipine (another antibiotic) were started. I was given Demerol for the pain every 4 hours.

B and I were exhausted. Just yesterday I had been discharged and here we were again. I could see the worry and disappointment in his eyes. This time I was in a different room. It had only one bed. B was determined to stay and someone brought in a cot for him to sleep on. It was awful, but it beat the chair. We tried to wind down. The events of the night kept spinning in our heads. What was going on?