Big News Today… well yesterday was the actual “yes” from Duke but today Bonnie got the assurance and affirmation she needed to make a decision. Bonnie and I have been terrified of Duke’s stance so far on her ability to participate and succeed in pulmonary rehab – while on IV antibiotics. So far we have heard that she must perform at a certain level for a certain amount of time BEFORE they would consider listing her. This was worrisome because in the past these antibiotics have been very hard on Bonnie. When she is on the cocktail of Tigecycline, Amikacin, and Cefoxitin Bonnie is pretty much out of commission. Extreme nausea, fatigue, and the resulting weight loss have taken a severe toll on her in past. It was hard for us to imagine her performing pulmonary rehab on these drugs. Unimaginable. Our worst fear being that we move to North Carolina, she would be unable to participate in rehab, and they would reject her. We have both lost sleep over this issue.
Today she had a couple of conversations with Duke personnel that allayed her fears. They want her to succeed. They are willing to experiment on the pre-transplant treatment for mycobacterium abscessus. She is now confident that they are cognizant of the difficult situation she is in. This is really the first time they have shown any patient compassion. I am aware of and understand the transplant teams mindset of tough love. I cannot imagine the pressure and stress they endure for every transplant patient. By allowing Bonnie to glimpse that compassion and verbalizing their commitment for new lungs, they gained a new patient. Barring some unforeseen complication, we are going to Duke! Now comes the task of actually relocating and getting this show on the road! Thank you all again for your thoughts, prayers, support, and friendship. There is absolutely no way we could do this without you! Have a great night,