We have been living in Wisconsin for so long now that we have realized it is time for us to move on. No, not tomorrow or next month but we are working and planning towards our future in a new state. This is the part that makes any transplant recipient nervous; leaving their transplant hospital and finding a new one without risking their medical care.
Greg has been doing so well (92% lung function) that we hate to risk leaving the UW-Madison transplant clinic. It took us some time to realize that the reasons we went to that specific hospital no longer hold true for our family. First, we wanted Dr. Robert Love because he was not only one of the top lung transplant surgeons in the United States but he was a Cystic Fibrosis double-lung transplant specialist. Since Greg’s lungs were so bad (10% lung function) and diseased, we needed and wanted nothing but the best: someone who knew how complicated CF lungs could be to remove (and a pain in the rear they were). But, Dr. Love transferred some time ago to Loyola Hospital near Chicago, Illinois. Therefore, he hasn’t been our doctor in a couple of years.
Then we lost the other lung transplant surgeon that worked on Greg; Dr. Zink. He transferred as well shortly after Dr. Love. Last to go was Greg’s transplant coordinator, Anne Marie. The 3 main pillars of support at the hospital, and the people that pretty much got everything done us (with amazing results), were gone. They were replaced with decent surgeons but now all Greg sees is the pulmonologist (not transplant doctor) and a new transplant coordinator that has cost us a ton on prescription refills because he can never get any of the prescriptions ordered correctly.
So, what is the real reason to stay? It is not because of the hospital. Sure, they have all his medical records and the respiratory therapists know him by face but that doesn’t mean he is in any better hands then any other hospital. His medical files can easily be transferred and we can even get him evaluated by a transplant hospital in a new city we are looking at moving to before we even move.
Now, it is just time to narrow down our city choices. This will take some time and since we have at least a year until we are ready to move, we will make sure to do all the research needed before making such a decision. It is time to move beyond the dead trees and dreadful winters of Wisconsin and on to the warmer climate that allows us to enjoy more the second chance at life Greg has been given.