Saturday, July 23, 2011

Jenna had an appointment the end of June and she told the neph she'd had pain in her transplanted kidney. The doc ordered an ultrasound to be sure there was no fluid accumulation, or blockage or other problem. All looked ok. Jenna was started on antibiotics and also had labs done to see what was up. The labs took a few days and by then she was feeling better. When we left that appt. I told the neph how long and dragged out the transplant process was at the hospital, and we were very unhappy. He said he would try to find out what the delay was.
So here we are - a month later, and Jenna's having more pain. (more here ) I pray this is not the death of her transplant. )-:
She has been seeing the psychiatrist as part of the transplant team. Yesterday her brother took her to the appt. and they checked in a few minutes early, hoping to be finished on time as her brother had something to do later. After 40 minutes he texted me and said she was still waiting, so I told him to have her check in again at the desk. There was no one in the waiting room the whole time. The person at the desk seemed surprised, then realized no one had told the psych she was there. So they took her in 15 minutes later, took her vitals, and had her wait 15 more mins. while the psych was on the phone. So by the time Jenna was in there, she was upset. She told her it wasn't the first time that she had been forgotten. And she said she didn't want to be difficult, but she had been waiting 9 months to get wait listed and there was no end in sight. The psych was sympathetic and offered to have the transplant coordinator come in right then to discuss it. That really upset Jenna as she was not prepared to go over what had or had not been done. She didn't feel comfortable and started to cry. They made an appt for Jenna and me to meet with the transplant coordinator and the psych on Aug. 3. Jenna told me she just wanted to get out of there, after 2 hours. She was a little ashamed that she didn't take the opportunity to speak with the coordinator, but I was proud of her for speaking her mind and being authentic about what she was comfortable with.
She's been hurting for days. Yesterday I spoke to her neph who just came back from Indonesia, discussed her pain and just before we hung up I told him, "Jenna's done with your hospital." I described the psych appt. and he was very angry and upset. I think he wants to find out what's going on, but I don't think even he realizes he has no power to fix up the pathetic transplant team.
Now today we get a form letter (dated 7/19 but postmarked yesterday) which says:
"The following tests need to be completed to proceed you on the UNOS Kidney Transplant List. Per our surgeon Dr. ________ recommended a VCUG and Pelvis Ultrasound for a repeat since the last one was done in 2007. We are also awaiting pap smear test results."
An appointment was listed on the following page for her to be at radiology at 8AM on July 29.
Fat chance.