We traveled to Seattle again for doctor appointments on March 9, 10, and 11. On that Wednesday, we saw Dr. Furst, and he was very compassionate about Cat’s progressively harder. He was the primary scleraderma transplant doctor for the University of Washington Medical Center. He then he moved to UCLA. While in Seattle, he worked closely with Mark Wener who is now the go to guy of scleraderma transplants at the U of W taking over for Furst. All of which to say that they “get” scleraderma and both doctors agree that Cat badly needs another transplant.
In between those two docs, on Wednesday we saw a pulmonologist and cardiologist both at Virginia Mason. Cat’s lung function improved greatly after transplant #1. Her heart was not greatly affected to begin with (there is webbing in both organs but manageable) and has remained stable.
They will do a autologus transplant again. They aren’t doing any allogenic (donor) transplants because the mortality rate is 20%. Using her own cells reduces the risk to 5%. There is a study for which Cat would need to qualify. There is a study coordinator. The problem is that her lung function may be too good. The line one walks for these studies is that one can’t be too well or too ill. The fact that she is rapidly turning to stone may not factor in. The other issue is that, if she qualifies, a bone marrow sample will be taken to see her cells are healthy enough to be harvested.
Dr. Wener is supposedly to have called Dr. Furst on Saturday to discuss the best approach in getting approval for the study and present Cat’s case. We are then supposed to hear the results of all that by Friday. We know quite well that they probably won’t happen that quickly. We’d both probably die from shock if that happened on schedule.
Meanwhile, Dr. Furst and Wener want Cat to start on a chemo IV as soon as the insurance approval can be obtained. It will be rejected twice probably and then approved. She is no longer taking Actemra or Celcept because they made her so ill. Dr. Furst was appalled that she has been so ill. We told him that at her last appointment, but, I guess, he wanted to give it more time. She is now finished with both of those drugs. So after the insurance plays the approval game, she will be hooked up once a week for 4 weeks and then no more for 6 months. It has helped others quite a bit. Dr. Furst felt so badly for both of that he gave us both huge hugs as we were leaving which made me cry. As he was enveloping me, I said in his ear, “We have to beat this.” He simply replied, “Yes.”