Originally Posted by
Birdie
Hi Tanya,
Patients should be given the broad range of possible results of treatment. After that, educated guessing is OK. I question the knowledge of a doctor who makes predicitions concerning how long you'll be on a given treatment and how quickly you will respond, without first explaining the range of possibilities. On that alone you're in need of a second opinion at the very least.
People respond differently to Wegener's and medication. I suggest finding out what indicators apply to your case, your body. After two and a half years there should be plenty of blood test results. I'm currently studying those for myself and learning quite a bit in the process. I hope to find a way of predicting Wegener's activity specific to me. Once you know the indicators you'll know how well the treatment is working, and be able to make wise decisions about changing treatment. You'll be more confident, more in control and feel less like a victim.
The only thing I know about kidney problems is don't ignore even the possibility. Wegener's and the medications we take can do a lot of harm in a relatively short time. You must be your own advocate, demand action even while upset and or crying and or depressed. To this end, bring friends and family to doctors appointments. More eyes, ears and minds will make for better health care.
Jack frequently reminded people to be vigilant about kidneys and how one could lose them in the matter of a few days, which I believe was his experience.
Knowledge is power! Wisdom is using it to make good decisions!
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