I don't really know how to begin this blog, but this seems like the most appropriate way. Vanderbilt University Medical Center, in particular their Organ Transplant Program, completely and totally dropped the ball with Bobbette's kidney transplant.
Since January, we have been told that the first person on the list of potential donors was going through the final stage of testing. While this testing is extensive, including a psychiatric evaluation, blood work, etc., it seemed to be taking a bit too long. The donors who had made themselves known to us continued to check in with Vanderbilt every so often. They were told the same thing each time, "We're testing the first person. Don't call us, we'll call you."
With Bobbette sitting at five percent kidney function, we became increasingly worried about the lack of progress. They have been doing all they can to keep her off of dialysis. The veins in her arms are shot after years and years of blood work and procedures. The alternative to using the veins in her arms for dialysis would be to put in an abdominal port. They are hesitant to do that because of her previous liver transplant, and because that would essentially create an open wound in an immuno-compromised patient. (Her body doesn't fight infection due to the anti-rejection medications she has to take.)
Bobbette received a phone call earlier this week to tell her that she was being activated on the waiting list for a kidney. This wait is approximately three to five years long. After asking why, she was placed on the phone with Margot, her transplant coordinator. Margot informed her that she was afraid some of the donors had "slipped through the cracks," and that we needed to have the ones we knew of contact Vanderbilt. Thanks once again to the power of Twitter, several of the donors contacted Vanderbilt. What happened next was nothing less than shocking to me.
One donor was specifically told to stop calling; that Vanderbilt had this under control and they were testing the first person. Even after explaining that they had been instructed to call, the donor was still treated in a disrespectful manner. After several phone calls to Vanderbilt, the next donor on the list was finally contacted. We're hoping that the final round of testing for them will begin soon.
It took calling out Vanderbilt publicly on Twitter to get a response. Their media department requested an email with information. After sending that, I was assured that things had been sent to the head of the Patient Advocacy program at Vanderbilt. Thanks to some wonderful friends, we were also given the information that allowed us to begin the process of lodging a formal complaint with UNOS, which handles all transplants. And thanks to a mother who is high up in the medical world, we are looking in to our options with Joint Commission.
Personally, I have lost a lot of faith in Vanderbilt University Medical Center. Yes, they are supposedly doing what they can now to rectify the problems that have occurred, but that's only been at the non-stop urging of family and friends who knew enough to ask questions and not accept half assed answers. What about the people who don't have someone to do that for them? How many times has this happened before? And how many times will it happen again? A link in the chain is broken, and it needs to be fixed.