UCLA Punts!

I’m so mad and disappointed right now. As I posted before, UCLA transplant center met yesterday to decide on whether my sister can become a donor, after being told to wait for three years. Instead of making a decision, they chickened out and asked for another biopsy of her kidney. Two years ago, UCLA performed a biopsy for the same reason, and failed to obtain a sample. At the time, when we asked them to do it again, they declined saying the “tumor” was too small and deep in the kidney. Now, two years later with basically no changes, they want to do another biopsy? Why do I get the feeling they’re asking for extra procedures to collect more money from insurance?

Both times my sister had a radiologist read the CT scans and send their results to UCLA. Both times it was determined to be a benign growth but UCLA didn’t accept the findings. I understand the need for a biopsy the first time. However, after failing to obtain a sample, they asked my sister to wait two years. What were they expecting? If it was cancerous, then it would have grown like crazy and probably killed my sister. If it was benign, the no growth was expected. Did they think the “tumor” would disappear on its own? It’s clear that the cyst was benign but now they change their mind? It’s not an academic exercise. I had to sit through two additional years of dialysis, risking rejection by UCLA as a recipient due to health changes. Does patient suffering play any part in their decision making? Do they want to be 100.0% sure of success before performing the transplant. So confused.

I think the last text from my sister said the donor committee is consulting with the recipient surgeons. I hope somebody steps up and makes a decision. This kicking the can down the road nonsense sucks.

==========

My sister came by our house so I talked to her in person. The donor coordinator said the surgeon that performed the biopsy two years ago was not at the committee meeting. My sister spoke with him at that time. He said if we wait two years, a benign cyst will grow about 1 mm per year, and that’s what happened. My sister’s cyst grew from 10 mm to about 12 mm. If it was cancerous, it would grow a lot more. He also said if it only grew 1 mm per year, he would be satisfied that it was benign. I think the committee that met yesterday just went through a checklist and came up with the same answer: biopsy. Surely the medical records have her failed biopsy documented so I don’t know why they would suggest the same thing. Right now, the donor coordinator is trying to reach the original surgeon, and also consult with the recipient surgery team. The answer can’t be “same” after two years of enduring dialysis.

We wait. If the answer is still negative, then we may have to switch transplant centers a third time. Maybe Cedars Sinai, USC Keck, or UCI Medical Center.