I am still waiting on final blood results to come in, but should know something soon about when my first tx will start. One concern was the blood glucose, but because the A1C was alright, they moved on. Now, I'm told my uric acid level is 9.2, which is very high and the "trial study" nurse suggested that I speak with my PCP about getting on Allopurinol before I start tx.
So, I called my PCP and explained the situation to the woman on the other end of the phone and was told that the message would be relayed to my doc, but that she was out of the office until the next day. Later that day, I got a call from a nurse at my PCP's office telling me to talk to my Oncologist about it. I replied that I do not have cancer but Hepatitis C and that the treatment is with a "chemotherapy drug", not conventional "chemo". Then I get another call from a different nurse at the PCP's office who tells me that a doctor in the "group" made the suggestion to speak with my Oncologist, a doctor I have never seen or even heard of, and wanted to know what my question was for my doctor again. I told her.
Hours later I received yet another phone call from my doc's nurse with a message from my PCP, that "the gout should be addressed before I start tx so I should stop drinking alcohol immediately". Now, I had just finally gone to sleep after working 18 hours but when she said that it got my attention. I have not had so much as a teaspoon of Nyquil since 1998. NO ALCOHOL. I told her this AND that my doctor knows this. I also let her know that auto-immune diseases run rampant in my gene pool, long line and list of them in every direction. I have never had gout before, to my knowledge, but I have a 33 year old son who has had it off and on since he was 16. I tried to tell the nurse that gout is an auto-immune problem, and is an inflammatory process that is often exacerbated by drinking, but not always brought about by drinking. She should already know this, but I felt it necessary to remind her so she could pass it on to my PCP.
In the process of trying to get something for my gout (which I did not accomplish) everyone in the building now knows that I have HCV. The Hippa gods must be screaming somewhere. I feel not only let down by my physician, but a bit betrayed as well.
Sorry to sound negative, but we all have our days I guess.
I hope everyone is doing well, and if you are not, I hope you soon will be. Thanks for listening.
It can be the ultimate in frustration trying to get through to health providers (on many levels)! Sorry that you're having such a bad day... hang in there. I hope it all resolves soon.
Just a few thoughts: Is your doc available be email? Or maybe fax a copy of your uric acid report to his office with a note about the specifics and requesting a prescription? (Nothing like asking for drugs to have a doc get back to you.)... or maybe just a copy of the result and a note saying "trial provider asked me to speak with you about this result, please call me." Sometimes going through a messenger just makes it all the messier... (also wondering if the trial nurse might be good enough to call your PCP directly, sometimes provider to provider is the easier route...)
don't lose the posi-tude! ~eureka
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