The Catch-22 with Doctors

I’m getting a bit angry that I haven’t heard back from Hannah’s genetics team about when she was to start treatments. Over a week ago, the genetics nurse told me she would get back to me the next afternoon. Of course, she didn’t.

So, I emailed her the next day. No response. It would be one thing if we were waiting on something minor and not so significant. But we were discussing starting the treatment that is going to change my daughter’s life!

Two days later, I finally called her office. “Dr. G. has been out of the office for the past couple of days, but I will make sure he signs the orders on Monday”.  She couldn’t email me just to let me know he was out and that it would be a couple more days?

Did I hear from her yesterday? Nope.

Am I going to get on her again today? You bet your sweet you-know-what.

The thing is that I do understand why doctors don’t get so involved with their patients. First off, I’m sure Dr. G. has hundreds of patients, all with genetic-related syndromes and diseases. To create such a “do anything for this patient” mentality and bond with a patient would be difficult. I get that.

I get that Hannah is just “another case” to him, even though he admits that he had to do a lot of research on Gaucher’s because he wasn’t familiar with it — aren’t doctors supposed to love a challenge? I get that.

I’m sure he and his team have dozens of phone calls and emails from family members wanting things done immediately, if not yesterday, and there is only so much time in a day. I get that.

But you know what? As much as I do understand all of this in my head, it still pisses me off to be pushed aside and not given answers when they say they are going to give them.

There is no reason to have me wait two weeks to tell me “we have a diagnosis” when I now know for a fact that the Gaucher’s Disease test results were there before Christmas. Dr. B., Hannah’s pediatrician, was able to pull up the test result and told me the date. Of course, he wasn’t sure if that was theee test result we were waiting for, so he couldn’t tell me the diagnosis was certain. But it was there. When I asked Dr. G. about it, “Yeah, it was ready a week or so ago, but it just landed on my desk.” How many times did I email for an update??? Couldn’t someone just have looked in the database like Dr. B. was able to do later?

Now, I’m waiting again and being pushed off again. The insurance company has already approved the treatments, the hospital pharmacy has already placed the order, now I just need Dr. G.’s group to get it scheduled.

Come on, let’s go. I know she may be just another case to them, but if you say you are going to do something at a certain time, don’t make me wait another two weeks!!!