Renal Cell Live!

Saturday, April 24, 2010

When In Doubt, Ask

One of the things I enjoy most about working with Dr. G and Dr. LA is that both encourage me to call or email with questions. Their staff are all attuned to the needs of the patients (for good reason they all wear pins emblazoned with the Cleveland Clinic square symbol and the slogan "Patients First"). I've never had a question or comment dismissed as silly, or irrelevant, or unimportant, and I've never had a call or email go without answer for more than a few hours.

Once we got home from Cleveland on Wednesday, I felt exhausted and was ready to go to bed. I spent most of Thursday in bed, with all muscles and joints aching incessantly, no appetite, and no relief in sight from Dilaudid. I felt somewhat better on Friday, but decided to call Nurse Shari. I left a message: had she any reports of similar reactions on Votrient or any other drug that I am taking, or any idea what this might be? About 3 hours later, she called me back: "I would say that any reactions to Votrient would have occurred much more quickly after you started using it, and your results Wednesday were so good that I can't attribute it to anything else. I have heard of a bug going around that starts with a headache and progresses to muscle and joint pain; the muscle and joint pain is persistent and constant. The good news is that it seems to pass off in a couple of days generally. I think that might be your problem." We both decided that this pattern fit with how I felt, and that if I didn't feel better after the weekend, I should call again.

Today was much better; I feel almost back to normal. I'm so grateful to have such responsive medical staff on my case. They are quick to respond, they're reassuring, they are always happy to answer my questions, and they all work together to include me in my medical treatment. All I have to do is ask.

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