Fun With the Nurse Prac

Ok.  I promise that I am not out to single handedly offend every medical professional out there.  Really.  It's just that lately I keep having to walk this fine line between being tactful and getting what I think I need medically.  Today when I went to the hematologist we waited in a room for my bloodwork and to see my doctor.  I wanted to ask for a PET scan because my MRI from LAST OCTOBER that my other doc ordered the day I started tx but never bothered to show me shows a scarred lower lobe of my lung, three liver tumors, one which it states cannot be ruled out as being malignant, an ovarian cyst, an enlarged lymph node, and what is either a tumor or a splenule (I don't think it's a splenule because I've had about six prior stomach CT/MRI's and it wasn't there before - splenules are there from birth I think).  Since my hematologist is also an oncologist, I figured he should go ahead and order the PET

But.  A nurse prac came into the room to see me instead of my hematologist.  She showed me the improved blood test, which was great, and I told her I needed to talk to the doctor about my MRI.  She said, "Oh, insurance won't pay for a PET unless you are already diagnosed as having a malignancy." (how stupid would that be by the way since the PET IS a test to diagnose malignancies in the first place?)  I told her I have good insurance, let's get it ordered and we'd see.  She was adamant that they wouldn't.  I said, look, they tried to do a biopsy and couldn't get it (the liver tumor) I need this test.  Again I repeated that I needed to see the doctor.

Then she said I needed to see her every two weeks, then the doctor every two weeks.  I said in that case I'd see him once a month, and just send in my labs the rest of the time like we had been doing, that he was the one who'd wanted to see me more often.  I said we were only going to drive an hour to see the guy if we actually got to see him,  Then my son, God bless him, told her that my case was complicated to the extent that I needed specialists to consult with my physicians about further questions and changes to my treatment plan.  That there was nothing anyone could really "do" at a check in type of appointment.  That we needed to be able to come in and get our needs met or it wasn't worth the drive in when we had so many other physcians to see (if that kid was on salary I'd give him a raise).  

I told her I still needed to see the doctor and asked if she was saying that I was not allowed to see him today and needed to wait two weeks, despite the fact that I had the appointment today.  She wanted to know if there was something further with which she had been unable to help me.  And I just point blank told her that I didn't agree with her that I couldn't get a PET scan without already having a cancer diagnosis and I wanted to talk the doctor about it.  I said that we should at least ask my insurance company, that I was certain they would cover it.  So she left the room and came back in with this sheet of exclusionary data for PET scans, again trying to show me how PET scans aren't covered.  

And we both looked at it, and really, there were many loopholes under which you could get the scan done so finally she said, "Well... let me just write this up and we'll see if they'll do it."  They authorized it without even batting an eye.  (Good on two levels.  I really feel I NEED the scan, and also... I would have had to eat some serious crow if they hadn't authorized it... lol)

But I am going to feel really good after getting this done.  This mass has bugged me for a while, not knowing for certain, but particularly when it said that it couldn't rule out a malignancy that scared me.  And the other tumor just floating around in there that they thought was a splenule, be nice to see what the H that is.  I'll just be relieved to have that scanned and to get a report saying there's nothing to worry about.

[sldb]

Iam a medical professional [RN] and i also have to offend other medical professionals when it comes to my own tx and the pts. i care for.  Continue fighting for youself, you know your body better than anyone else.

[sfbaygirl]

Yuck, I can comiserate on health care. The only good thing about my idiot GI was he had no NP.  I am glad you persisted and are getting the PET scan, sounds like you need to it!  I sure would  be worried about this mass too!  Good for you for saying you only want to see the DR, but I bet they will send her in anyway.  My hemo always saw me personally, still does!  Thankfully he doesn't have an NP he puts in charge of giving info. I would flip! After the amt of info we know about our illnesses some of these NP's and even DR's don't have a clue!  Hence, my making the ins. co assign me a real hepatologist.  Now I have a problem, because they don't want to pay for tests out of the group.  Although, he is a Healthnet Dr, they want me to get my tests locally. I was going to get a BX, but no more. Why would I trust some GI who has no experience with livers give me a BX? I wouldn't.  I may have to find some local dr and the ins. co sent me to one arrogant ahole, but I won't go back...so I have to find a local yokal to do tests. Bugs me, but at least I have a better dr.  

[Wassup]

Good for you, honey! As Sldb, RN, just said, no one knows your body like you do.  I've been dealing with health professionals my whole life, with one thing and another. There are good and bad health care givers at every level. My GI has an excellent NP whom I see almost exclusively, (unless I'm having a proceedure, Ie., LBx, endoscopy, colonoscopy, etc.) My NP, Melissa, is thorough, listens to my questions and concerns, is informative, and anything she's not sure of, she asks the Dr. and gets back to me within' 12 hrs. Then there's the saddist who insists on trying to start an IV (maybe 10 times), before finally asking for someone else to try, and sends you home with arms and hands that look like rotten potatoes. One thing they all have in common, they're all human! And, only the most arrogant think they're infallible. Let your gut be your guide. If something seems wrong, do something about it. It's your body, your health and your life.    

[scratchinghead]

1 hour drive? Isn't there someone in the other direction within 1 hour? That's a long way to go to get stroked.

I took a Vitamin D test 3 weeks ago and threw in some liver functions, have received the bill but haven't seen the results yet and I even phoned and waited through all the auto-choices before I got a secretary to take my message. I think they think money grows on trees. Maybe they're trying to get rid of me. I shouldn't have to yell to get my results. That should be a priority to get them to me in my condition.

[Deb_c430]

I am really glad your getting the PET scan, tumor on your liver is VERY worrying!

i can not beleive they didn't react very strongly to that before starting you tx! geesh you think would take precedence over every thing else! Wondering if  that is part ot your anemia problems and so on!   Shakes head,  they need a good kick in the Butt!

So you girl, stay strong!

I think a lot of Docs are more worried about billing, the new  lawyers of our generation.

I do have have a good Doc, he is young and wants info and will follow up, His NP not my favorite, but I love my nurse from the drug company and tend to go through her, her speciality is Livers and  she always follows up, always has time for me and  is great with the Doc and his NP, who is way to busy to give a care for me.!

She will answer all my questions, and honestly I very often think as it is with many Nurses are way smarter than some of the Docs.  

I trust her because she stays on top of new developments, she attends hep conferences and is a sort of advocate for her patients and GIs.

Good luck Ala! This worries me,  let us know it goes.

[jools57]

You Go Girl!!!!.Way to stick to your guns. Your son sounds awesome, glad you have him for an advocate! =)
Keep us posted on results.

[wyntre9]

I'm always fighting battles with the nurses, especially.  I managed to get my NJ allergist to send 8 months worth of injections to my new Dr.s' office after I promised I would get shots in at the Dr.'s instead of self -injecting.

Just accomplishing THAT took days.  When i went to see the Dr. about other issues (UTI, sinus infection, abdominal stuff) she was supposed to give me the shots but REFUSED because she said she couldn't understand the allergist's orderds.  I went into meltdown mode and even though Dr. said the nurse was just following the 'law' it really pissed me off coz she interrupted my allergy schedule, caused me to have more sx and didn't give a damn.  Plus, i've been on maintenance dose for 10 years and self-injecting most of the time so it REALLY annoyed me.  I wanted to kill the b!tch.  

When i got home i had to once again coordinate between the allergist, the allergist office manager, the allergist nurse, the new Dr.'s staff and his nurse/

I could have gone postal but I eventually got the first shot - 2 weeks later.

[DB 0]

When I first met my NP I asked about the VX 950 trial and she said whats that a new kind of car?Its been like that for 47 weeks now.I as supposed to go accross town once a month to see her,quit that after 3 months.I start calling her 2 weeks before my meds run out and she rarely calls back.So I learned to leave a mess. for her and what I need with the GI dept.On the orther hand,I left boxes of chocolates at my clinic close to where I live for the shot nurses and the girls at the pharmacy on valentines day.If they had not helped me deal with my NP about  my meds and dosage it would have been a bad deal.Hoping for the best for you,new problems and procedures are scary.

[Liz50]

Ha! I love that "leave a mess for the NP and give candy to the people who actually DO something" for you! Walrus could learn a lot from you. Reward the people who care and ignore the ones who don't....Walrus' NP is such a mess, we have just decided she is a wacko or something..never calls with labs, won't let him talk to a doc,treats him like he's an idiot, no matter what. He's changing docs and had already had more attention and care from the new NP and he hasn't even had one visit to the new doc.
I mean, it's only his LIFE we're playing with. (Sigh) He's had to be super proactive in his own care because he knows nobody else is doing it. That's just wrong.
Liz

[Lady Lauri]

.........Oh, insurance won't pay for a PET unless you are already diagnosed as having a malignancy." (how stupid would that be by the way since the PET IS a test to diagnose malignancies in the first place?) .....................

I asked for the 'PK something' blood test (for ovarian cancer screening) awhile back. they did it but informed me that..."If it comes back okay, you have to pay for it, if not insurance will'!  I said " OH! well please DO bill ME"!

So crazy out there!
SO sorry about the mass's! Why have they not followed up on this YET? Do keep in mind, scar tissue can show also, did on my sis and did in my lungs. Scared the hell out of me, BTW! Get that done, off of your mind.

You (and son:) keep fighting, beotching or 'squeaking' to get whatever you need.
How upbeat you stay for all your struggles, your something, girl!

LL

[eureka254]

Good for you!  It's good to see people who know their medical rights and aren't afraid to speak up for themselves! (And I say that in SPITE of the fact that I'm in the medical profession :D.)  The spenule/tumor? is concerning... I'm aghast and (almost) can't believe that anyone sat on that MRI since October?!? Thank goodness that you're a good advocate for yourself!

Though, I must say, in regards to the " biopsy, but the couldn't get it" -- that might have been a good turn -- that the biopsy wasn't successful.  A needle biopsy of liver tumor does run a high risk of 'tracking' -- that is, sometimes the needle extracting the 'tumor' cells leaves a track of cancer cells in it's wake - thereby spreading the tumor.  Liver biopsy should be used for staging/grading NOT for exploring possible cancer.  (My husband was diagnosed w/HCC via imaging and labs -- biopsy was never considered the first line of diagnosis by his oncological surgeon.)

Good luck.  I hope it's not anything malignant.  God bless.