Friday, January 8, 2010

Patient Persistence

How am I supposed to react when the nurse comes into Richard’s critical care hospital room and announces that the pharmacist recommended a change in antibiotics because the first one could affect his heart, and followed with the announcement that Richard’s swab showed positive for Methicillin Resistant Staph Aureous. Now, I don’t think these things are good when one has a normal immune system, but I’m pretty sure they can be extra problematic for people who are on immunosuppressive medications.

I felt worse after talking to Rachel, who encouraged me to check with Richard’s post-transplant care team. I actually succeeded in getting the on-call post-transplant doctor to talk to me and agree to take a call from the hospitalist treating Richard. I felt greatly relieved -- until Richard’s nurse told me that the hospitalist refused to call the post-transplant doctor.

My misgivings were compounded when I found out that the nurse for the night had some experience with post-transplant care and confirmed my fear that the level of immunosuppressive medication in Richard’s bloodstream was not being tracked. This was especially worrisome in light of the fact that less than a month ago the post-transplant team had changed Richard’s dosage because his levels were off.

Richard has had rejection issues in the past, so I’ll do anything necessary to prevent a recurrence. The night nurse agreed to suggest the required lab test to the doctor. I realized there was nothing more I could do until morning, so I went to bed.

Just as I was entering the twilight zone between awake and asleep, Bub called and put Elaine on the phone. Elaine, being a pulmonologist, and one of our very best friends, was not happy with the report I gave her. Upon waking, I went back to the hospital -- armed for bear.

Lo and behold, the doctor with whom I was having the problem was no longer on call. I had to start the whole patient advocate routine with another doctor, who sent a nurse out to talk to me. The nurse was a different one than the one who had helped me the night before. Once, again, I explained my misgivings. Once again, the nurse asked me questions, the answers to which they should be getting from Richard’s post-transplant team.I went to the critical care department manager and pled my case. She reported that the doctor would come talk to me. I made it clear that I had no desire to speak to the doctor until he had talked to Richard’s post-transplant doctor.

Three hours after my arrival at the hospital, I had still not been allowed to see Richard, nor had I seen his doctor. I went to administration, where the hospital risk manager took over talking with me. By this time, I was very controlled, and very angry. Is it too much to ask that our healthcare professionals admit when they aren’t experts on something and make a phone call to the experts -- or transfer the special needs patient to a special needs facility?

One of Richard’s favorite sayings is from Proverbs: He who knows not and knows not that he knows not is a fool; avoid him. He who knows not and knows that he knows not is a student; teach him. He who knows and knows not that he knows is asleep; wake him. He who knows and knows that he knows is a wise man; follow him.

The hospital is a very pleasant facility, with a home cooking cafeteria and wonderful nursing care in CCU, but unless the doctors and administration recognize what they don’t know, I plan to shun them and this hospital.

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