I know it has been forever since I have posted. I'm trying to change that. Especially as my life is in a major transition now.
As has been on the radar for a few years now, I am finally starting the formal process to be listed for a double lung transplant at Stanford University.
I recently has to change insurance companies, which forced me to change CF clinics. There was about 6 weeks where I essentially went without care. And in those 6 weeks, I came down with a very stubborn infection that did not respond to antibiotics. By the time I was able to be seen by a doctor, my lung functions were at a lifetime low. I was admitted to the hospital for 10 days, shortly before Christmas. I spent a total of 3 weeks on IVs, and while my lung function came back some, it is now in a range where I am a strong candidate for transplantation.
So starting Monday, January 30th, I am going through the testing to determine if it is time, and what score I would have if I were to be listed now. Lungs are given based on a Lung Allocation Score (LAS), which is determined by a number of tests. Whomever has the highest number is first on the list if lungs come up that are compatible with their size and blood type.
I am nervous, excited, anxious, and accepting of this new phase of my life.I have started a Facebook group here for quick updates. Feel free to join the group, but I am also going to try to hold myself accountable for updating here more often.