Update on the Line "Exchange"

It sounds funny doesn't it? Like I'm at the customer service desk at Target, "Excuse me, my central line isn't working. I'd like to exchange it for a new one." Of course, the big difference between hospital care and retail is that the exchange isn't free in health care. The medical bills just keep coming and coming!

For the most part the line exchange went smoothly except for one small detail. Bill and I told everyone -- the nurse who prepared me for the procedure, the charge nurse, the resident who consented me for the procedure, and both nurses in the interventional radiology suite -- that they couldn't use their usual Versed/Fentanyl combo with me because I don't respond to Fentanyl. Fentanyl is a narcotic frequently used for conscious sedation during localized procedures that do not require general anesthesia. We know it doesn't work for me because during one of my feeding tube placements I was given 400 micrograms (A huge dose for someone my size) and still awake and carrying on a conversation. The drug just doesn't touch me.

So we were thorough in spreading the word and the staff assured us that they would use Versed and Dilaudid, which has worked well for me in the past. Once again I was awake for much of the procedure and asking questions. We came to discover in the recovery room that the doctor performing the procedure ordered Fentanyl despite our requests. When I was still awake they just kept giving me more Versed. Finally someone gave me Dilaudid.

When we learned that our request had not been honored, we asked to see the resident. He had impressed me during the informed consent so much that I told him so. He explained the procedure clearly, described the risks and their relative probabilities, and asked if we had any questions. He wrote down the information about the Dilauded and I'm quite sure he passed it along. So, this poor guy, who probably wasn't in the room for the procedure because he's busy doing the "scut" work, had to listen to our frustration. He apologized so nicely that I thought someone should videotape him and make doctors all over the country watch it and learn something.

The attending physician, the guy "in charge," apologized but was not nearly as sincere. "It was my decision to use the Fentanyl because it works so quickly," he explained. So either the message never made it to him, he just ignored the messenger, or he didn't trust my knowledge of my past medical experience and my responses to drugs enough to adjust his standard approach. So much for patient-centered care. I am beyond frustrated with providers who do not listen.

On the upside one of my favorite nurses took care of me. She took care of me the day they put in the first feeding tube and the day they pulled the second one out for good. She is a wonderful nurse and human being; she made it much easier to deal with my frustration by acknowledging my right to those feelings and letting me vent.

I will keep you posted on the heart rhythm. I was still having the premature ventricular contractions in recovery, but then they stopped. Bill listened to my heart when we got home and the rhythm was still normal so I hope this is going to work ...

Thanks for all the positive thoughts, prayers, etc.