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the team decided that continuing agressive care was futile and with the patient's decision to give up, support was withdrawn.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?

Doctor, I made you a comic...

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Makayla Schwantes is a wonderful 7 year old girl who made me a comic. I think she is a wonderfully creative and intelligent little girl. Thank you Makayla! (Thank you to her parents for letting me share this).





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"I miss her something terrible."

A daughter brought in an 85 year old man for an office visit. He and his wife lived on their own. The elderly couple had resisted every effort on the part of family to move out of their house into an apartment in a senior center or in an assisted living facility. Together, the frail couple helped each other with their medicines, activities of daily living and went everywhere together. His wife had crippling arthritis and was in constant pain. Finally, after 2 months in hospice, she died.

Here was the husband in my office, bereft, tearful and lost. He had lost his wife of 64 years. That is more years than I have lived.

"We went everywhere together, doc" he told me.

He looked up to me with tears in his eyes, his voice cracking as he said almost in a whisper, "I miss her something terrible."

There is no medicine, no pill, indeed, no answer to grief.

It's the highlight of my year!"

This 51 year old construction worker came in for his annual physical. His hands were rough and grease-stained. He was large, muscular and plain of speech and dress. While I did his physical exam, we talked. I asked him how his kids were. His face lit up when he told me this story about his 16 year old daughter:

"You know what the highlight of my year is, doc?" he asked me.

"No, what is it?" I replied, thinking he would tell me about his annual fishing or hunting trip, or a vacation.

" Every year, my daughter's dance class puts up a production of the Nutcracker. The opening scene has some adults dancing the waltz at a party. I always participate so that I can be on stage with my daughter. She usually plays one of the wind-up dolls later in the play."

"You dance?" I asked, as I looked into his ears with the otoscope.

He laughed. "Not very well. But I wouldn't miss it for anything."

"This year, they are going to let the actors, including my daughter play more than one role and I get to do the waltz with my daughter in the opening scene. Imagine! I will be able to dance with my daughter this year!"

His face beamed.

"The high point of my life is spending time with my kids and the Nutcracker dance with my daughter is the highlight of my year."

I love listening to my patients' stories and my heart was warmed and touched by this seemingly rough, macho construction worker's tender spot.

"She's worth it!"

I was seeing an 83 year old male for follow up of recent health problems. I asked him how things were going. He pointed out that he was a little tired. His wife (81 years old) was formally diagnosed with dementia. She had had a recent hospitalization for an acute illness and had been discharged to a nursing home. At this time, my patiet's eyes flashed as he told me, "I didn't like the place! They had her walking with a walker." I got her home and in 3 days, she was walking on her own."

He told me that now she was home, he had to watch her carefully -- in case she turned on the stove, or left a tap running. He did all the cooking, cleaning and helped her get dressed. Concerned about his health, I explained as sensitively as I could that there were options: he could have home health come and assist him ("I won't have strangers coming into my home to care for my wife!"), he could place her in a nursing home or assisted living facility where he could visit her often ("I will never do that!"). In the end, somewhat exasperated, I told him that I was concerned about his failing health and strength. In the process of sizing up the task of his caring for his wife full-time, I explained that it was a lot of work for one 83 year old man to do. He fixed his gaze on me and simple said:

"She's worth it!"