9/2/00 I was still expressing concern about the pain. Even though the JP had been unclogged, the pain was severe every time the pain medicine began to wear off. No one was diagnosing me, just giving me more pain medicine. We asked why my belly was so swollen if I was draining. I had a fever. B and I asked the nurses and residents if tests could/should be done. We saw Dr. J only once that day and he said that he was surprised to see me. He wondered aloud why I kept getting sick. I was taken off of Demerol and was given Percoset for the pain. I was asked if I'd moved my bowels and when I said not in a few days, I was told that I should move around as much as possible (taking walks, etc.) and stop taking Percoset because it was binding. I started taking plain Tylenol. We walked the halls repeatedly (the IV shuffle we called it) to help move my bowels. (still on Vanco and Maxipine).

9/3/00 I asked to be TREATED and not just left alone to see what would happen.

Dr. M put me on an all-liquid diet and told me to continue walking when I could. I asked about the distention of my belly and Dr. M said that it would not last forever. The "Russian" was on duty and doing nothing. Increasingly upset by the lack of answers and treatment, B, Terry (my recipient's sister) and her husband went to ICU and talked to Sheila, the ICU nurse who had cared for me post-op. Sheila brought over her boss from ICU to see me. The head ICU nurse and Sheila both said that clearly something wasn't right and questioned why an ultrasound wasn't being done. We called the Russian doctor (on Sheila's request) and asked for tests to be done. The Russian doctor said "I call, I call doctor, he say no needed". The ICU people made her call the doctor. Later that evening I demanded to speak to Dr. M myself. He called the hospital and told me that there was no need for an ultrasound, but that an x-ray would be taken. (still on Vanco and Maxipine) FEVER continues.

9/4/00 Labor Day There were no liver team doctors around at all today. I was told by a resident that the x-ray showed that there was an excess of gas and stool collected in my bowels. No explanation for the distended abdomen. I stayed on Colace and Tylenol and continued to walk. (still on Vanco and Maxipine). FEVER continues.

9/5/00 Dr. M came in this morning with the x-ray. He showed B the cloudy mass in my intestinal/bowel area. He described my bowels as "going to sleep" as a result of all the medicine.

This was Dr. T's first day back from vacation. He walked in about 3 PM with J O (social worker), and apologized for being on vacation. He stated to me, "you're on the WRONG antibiotics and I hope you're eating." I told him that Dr. M wouldn't let me eat, I'd been on a liquid diet and he told J O. to order me a pizza. He then said that he was sorry and said "I'm the brains behind this team and I'm just beginning to teach the other doctors about aftercare." I stopped taking Vanco and Maxipine and had solid food for dinner that night. (J O did NOT bring pizza). She barely said a word in the 10 minutes that Dr. Teperman was there. Dr. Teperman said that I'd be taking Levaquin and that I should be going home on Thursday. Before leaving, he apologized again for being on vacation.

We feel like now we will be taken care of. FEVER continues. Belly still distended.

We could not believe that Dr. Teperman TOTALLY reversed what Dr. M had said. Weren't we all on the same team here?  Had I just lost 3 days of treatment because Dr. Teperman wasn't here?  It has been 4 weeks since surgery. WHEN will I start to FEEL better? WHY am I still sick?

9/6/00 Dr. Teperman came in about 12:15 PM. Looking at the JP, he said, "I think I'm gonna take this out." He pondered for a moment, then prepared to remove it. As he pulled it out, he exclaimed, "YUCK!" He discarded it in the regular waste paper basket (!) of the hospital room, said he would be back later, and left. B & my mom returned from a walk, and B put on gloves and examined the drain himself. None of us are doctors, but it was clear to B, my mom and myself that the drainage holes of the tube were hopelessly clogged with gunk. Now we were concerned that the failure to keep the drain unclogged and working had affected me internally. Dr. Teperman did NOT return that day as he said he would. Dr. J came for rounds that evening and said that I had 3 different infections. He said, again, "sometimes you come to the hospital and you just get sicker." Two infections were indeterminable and one was a urinary infection. FEVER continues. At one point, when I asked Dr J when will I be better, he said "Well, all we can do is hope". I cried and asked B if I was going to die.

I just didn't know what to do. I was beginning to think that the whole thing was a big mistake. Then I was angry for having such thoughts.  My recipient had nothing to do with this.  Could someone please tell me WHEN and HOW I will feel better?