HELP: PA always unavailable and irresponsible. Didn't tell me I need Neupogen when ANC< 0.5

[lalapple]

Just started on Neupogen last week on Thursday morning on 3rd wk of tx with Pegasys and Ribavirin.  PA ordered me to do labs for CBC every week on Tuesdays so she can review my results on Wednesdays and tell me if i need Neupogen week by week.  
Well, got lab done this Tuesday and called in after 24hrs on Wednesday to clinic to ask the PA to call me back.  Never did.  The clinic closes and so I left a message to page the doctor who promised to have a staff call me about it today (Thursday).  
So it's past noon today on Thursday and PA still hasn't called.  However, a staff called and informed me that my ANC was below a 0.5 which is a 0.2 drop from last week.  I must take the shot this week.  I asked why the PA haven't called me bc it is her responsibility to inform me EARLY ON WEDNESDAY 24 HRS after my Tuesday lab that I would need the drug immediately.  She is putting me at high risk with my ANC so low.  The staff admitted that the PA should have called me earlier about this situation.  It is now almost 3 pm and PA still hasn't called and clinic closes before 5 pm.  
If the staff hadn't called me at noon today and the PA didn't call til after 3pm, then I would have to postpone my Pegasys on Friday night in order to keep the 2 shots 24 hrs apart.  Now wouldn't that just be putting me at even higher risks for allowing the virus to replicate and mutate itself more?

I think it is her responsibility to call me and tell me that I need Neupogen ON TIME on a weekly basis as long as I get my labs done early on Tuesdays as she had requested.  

The last call I got from the PA was last week when I had missed her call and called her back.  She criticized me for half the phone call telling me that I shouldn't have called and left multiple messages bc she's busy in clinic.  Well, I wasn't even aware that I was prescribed Neupogen until the pharmacy (NOT THE CLINIC) called to tell me that I would need the drug.  So yeah.. i called for a reason, asking her why she had prescribed me Neupogen without telling me first.

I am tired of dealing with her and having her put me at disadvantage during tx bc she can't spend 5 minutes reviewing my CBC and telling me if i need Neupogen for a week.  why is she still employed if she can't even do that?

I'm sorry I'm ranting, i've been so frustrated with this situation for more than 2 days already and i have cried about this bc it is very important to me that my immune system stay up and having ANC below .5 is obviously low and dangerous.  It has been more thatn 50 hrs after my CBC lab from this week and she still hasn't called me back.  

What should I do about this situation?  Please Please Help

[lalapple]

oh.. and i was right, she NEVER called me back.  so basically, if i hadn't asked the clinic to page my doctor last night then, i probably wouldn't even know by now how low my ANC is...

[lalapple]

thank you all for replying.  i took my injection at 2pm today (Thursday).  but my mom is concerned about whether i should still do my Pegasys on Friday night since my ANC is just a little lower than 0.5?  she thinks it could be dangerous since Pegasys is lowering my neutrophils

i know i don't want to skip my shot... esp if it's due the PA's failure to inform me that my ANC dropped 0.2 from last week

[jmjm530]

The bad news is that, yes, your PA should be on top of whatever protocol your medical team uses.

The good news is that some liver specialists (mine for one example) don't prescribe Neupogen until ANC drops to 300 and stays there for awhile. For example, my ANC hit 320 but then rebounded to over 1000 in two weeks without Neupogen. The reason is that newer studies do not correlate low ANC with increased infection rates for those on treatment. Hopefully this will take away some of your anxieties.

-- Jim

[Trinity4]

Time to go right past the PA and straight to your doctor.  Make it perfectly clear that you find the level of care you are getting from the PA unacceptable - if you want to stay with your current doctor then schedule a consultation and make your grievances known.  Explain how you feel and make sure before you leave you, your doctor and the PA have worked out things to your satisfaction.   Good Luck
Trin

[nygirl7]

If you can't switch then you should make an appt with the DOCTOR and tell him this stuff directly.  If she is doing this to you - chances are she is doing it to other people. I really don't think the doctor would like the PA ruining peoples chances of success OR his reputation. I'd kind of nicely remind him of that - she is an extension of HIS name.....and she's making HIM look bad (but of course you tell him how SURE you are that he would never ever do something like this if he knew).

That way you look good - the idiot PA looks bad and perhaps he will make SURE that they are on top of everything as far as you are involved.

Sometimes (just my opinion here) I think PAs think they ARE the real hep specialist doctors and they get a big head.  Reminding a doctor of the fact that he is in CHARGE of your case might just be the right thing to do here since I'd imagine finding another clinic just isn't an option.

Let us know how it turns out but do SOMETHING.  You can't dose reduce and you know it.........so you gotta fight this one out, nicely of course, but fight it out none the less.

It's YOUR life!

[lalapple]

Thank you for your reply.  this PA works under my doctor and she's suppose to take care of my "everything."  I even see her for clinic visits.  I only saw my doctor once before treatment.

[Trinity4]

I would find another doctor - right away - as long as you have the meds to get you through each week, you have time to find another doctor.  It's unfortunate, but this happens more than you know and you have to be your own advocate and raise some holy hell sometimes.  If she isn't going to provide you with the level of care you need I would find a doctor, not a PA, preferably a GI or hepatologist that will keep you updated.  You're paying them, they are in your service so you can fire them as well.
Good Luck
Trinity