Staying in the Strugglle

I just finished watching 65_redroses, a documentary about Eva Markvoort, a Cystic Fibrosis patient. The movie documents Eva's life before and after transplant.  I could relate to her fears and her hopes. I could relate to her sense of isolation in the hospital. Eva received her transplant at age 23.  She died two years later.  I wish the movie had a different ending. I wish she was still alive.

I am home after spending 10 days in the hospital.  I'm finishing my IV  antibiotics at home. I'm grateful to be home yet recognize the strain that it puts on me and my family.  I have round the clock antibiotics so I am so tired,  I do not feel fully present. The medicine makes me nauseous. My sleep schedule is off. I feel off balance. I am tired of struggling to maintain my health. It's a fight that is never over. I feel weary.

At this moment I am aware of an 8 year old CFer who is being admitted tonight to the hospital, a 16 year old CFer who is scheduled for surgery next week, a 25 year old CFer who has been waiting over 6 months for new lungs and a 38 year old CF transplant patient that died last week from rejection.  They struggle.  I struggle.  The struggle continues.