In memory of a young cystic fibrosis patient...

My heart is heavy with grief. A young man with cystic fibrosis died in the intensive care unit today. I have taken care of this young man as a patient for about 5 years. During that time, he has had several close calls and has spent a fair amount of time in the hospital. I last took care of him during a 33-day hospital stay in which I rounded on him every day. We would sit and watch WWF raw on tv (his favorite show). We talked about how when he got out, we would go to Madison to see an actual wrestling match -- the one they televised and that we watched. I promised to go. That is a promise I can never keep. I had sat by his side when his marriage fell apart and he wept bitterly. I had reassured him when he thought he would die and together, we fought until he lived to fight another day. He trusted me with his life. I felt that I gave him good care. This last time around however, he came to the ER when I was out at a children's camp. He was admitted directly to the ICU and sent off to a university hospital the following day. Within 2 days of getting there, the team decided that continuing agressive care was futile and with the patient's decision to give up, support was withdrawn. He died within the hour of withdrawal of support. I do not doubt that the doctors there gave him excellent care. I do not doubt that the decision was made competently. I do believe however, that they did not him like I did. One of them told me over the phone that he had no 'quality of life'. I told him how this young man had celebrated the 4th of July with his family and ate a barbeque. I mentioned how he joked and laughed and enjoyed wrestling on tv. He was surprised. In the end though, my patient, my friend, died. I feel the loss. His death reminds us that CF is an ugly disease that steals away the youth, vigor and ultimately the life of these young people. It leaves behind weeping parents, spouses and sometimes children. I take care of adults with cystic fibrosis. Some days between waiting for one patient to receive a lung transplant and the always untimely death of another patient, I almost want to walk away from this work ... almost. But I will not. I will fight it on every front with the anger born of loss. I will aggressively fight for the lives of my young patients and purchase every breath and every day from this relentless disease. What else can I do?