My ten year old daughter has Cystic Fibrosis with Cirrhosis of the Liver, Esophageal Varices, Portal Hypertension, microscopic colitis, CF sinus disease, CF diabetes, and autism spectrum disorder. She grows aspergilus.
She is currently on the liver transplant list. She is on a low protein diet because she has high ammonia levels. She has had many tune ups for pulmonary issues in the last year, but has not needed one in the last eight weeks. Her latest lung x-ray is great, her PFT's are wonderful, we have done exercise pft tests, IV bubble study echo, and arterial blood draws. hepatopulmonary syndrome and pulmonary hypertension has been ruled out. She has no or very little acites. The PFTS, and echo is great. The only thing that showed up was her PaO2 was in the 60s ( not too bad ) So far there is no pathological reason for her to have the feeling of shortness of breath. This has been going on for three months, and seams to be slowing getting worse. This is something she is complaining about often and worsens as the day goes on. Any ideas???