IT'S RANT TIME!!!!!

[kellyt]

Ok, here we sit on the 5th of Oct.  I faxed over my medications refills on the 28th of September (like I always do) so that I would receive my meds via UPS in 1-2 days.  I called the pharmacy and was informed they were waiting for refill authorization from the doctor.
So I called my Neph's office.  I was able to speak with his new nurse and the excuse/reason I received was so....wrong!  Here is her justification.

NURSE:  "I received the faxed authorization request on Thursday, but Dr. X is on vacation and the on-call Dr. we have covering for him is ALSO on vacation, so there was no one  to sign the refill authorization."

ME:  "What?  Ok, these are medications I fill every month and they are not for a toe fungus, they are my antirejection meds and BP med.  It is very important that I get these filled every month with no missing of doses."

[I should say right now that I did not mention to her that I have about a six month stock pile of Prograf and Cellcept.   That's so not the point.] 

NURSE:  "Well, we've tried to get the pharmacy to refill scrips in the past when the doctor wasn't available for signature, but they refuse."

ME:  "AS THEY SHOULD!!!   What is the protocol for when the Doctor is on vacation?"

NURSE:  (now starting to get snippy with me)  "Mrs. Talbert, when the doctor is out we have to have another doctor approve the refills, but that doctor is also on vacation.".     

THAT MAKES NO SENSE!!!!!!!  But apparently, Dr. X will be in this afternoon.

Anyway, we went round and round.  I just received a call from the pharmacy saying that the refills were approved and the doctor approved the GENERIC Prograf and Cellcept this time.

NO!   I told her I am not comfortable with that and not to fill those two scrips until I hear it from Dr. X's mouth.  He told me in the beginning never to accept GENERIC Prograf or Cellcept.

I then asked  "What doctor approved these refills?"   Apparently, there's a P.A.!!!!!  WTH?   First off, why couldn't the P.A. have authorized refills 7 days ago, and secondly, I've never seen this P.A. and they should no better than to authorize GENERIC Prograf and Cellcept!!

I called the doctor's office back and this time had to leave a message for the nurse saying that she needed to confirm this change with Dr. X himself when he comes in this afternoon and to call me back.

I DON'T GET IT, PEOPLE!!!!  There is this new invention called a Sharpie.  Write in big black letters on my chart NO GENERIC.  I have insurance and I pay a large amount of money for that coverage, so they can pay for brand medications.  For these two meds, anyway.

November will be two years!  You would think we would have this down by now!!   It's just too convenient that there is a new nurse, a P.A. I've never met or heard of, and this is the first time I'm authorized for GENERIC!     

[jbeany]

My info from my transplant hospital says NO GENERICS and if, for insurance reasons you absolutely must switch, then the whole labs every week must be repeated for a month to make sure they are absorbing at the same rate as the brand name ones.  Idiots!

[kellyt]

Well, guess what?  I received a call from the nurse maybe 45 minutes ago stating she faxed over new scripts for the brand name medications.  I asked her if that was on Dr. X's orders and she said "Yes, but we just didn't have all your information.."  blah, blah, blah   B.S.!  You need to have all my information any time you are doing anything on my behalf!!!
If you're going to be be his nurse you better know what you are doing.  That is unacceptable in my book.  I'm not mad anymore, but if I were the old patient I used to be, doing everything I was told by the Doctor and/or Nurse without question I would have gladly accepted the new meds and who knows what would have happend...if anything.  I'm not willing to take that chance.

GUESTS and NEW MEMBERS:    If there is one thing you get from this site I hope that it is BE YOUR OWN ADVOCATE!  Know your meds, know what your Doctor wants and doesn't want and DO NOT be afraid to question authority!  This includes, Nurses, Pharmacists and Doctors (especially doctors that are not Nephrologists).  I learned this from this site and I have probably saved my self a lot of problems from it.
I remember one time I got a call from the transplant clinic's nurse and she told me to start taking xyz medication and I asked what it was for and why I needed it, etc.  Come to find out, she wasn't even looking at my chart!   She has since been terminated.

[MooseMom]

I know what you mean.  I've been living with this sort of thing for 6 years now.  My mom died over the summer, and because of all the travelling and general trauma of it all, I missed the deadline for refilling one of my meds by 11 hours.  Would the pharmacy give me a break?  No.  I had to get a new script.  I told the pharmacy that if they were going to require a whole new script, then they'd have to contact the doctor themselves.  Just last week I noticed that another of my meds had suddenly disappeared from my list (I order refills online with my mail order pharmacy).  I grabbed the bottle which said I still had another refill to go.  So I had to call them up only to find out that since it was a class C drug (sleeping pill), the prescription expired after six months, not after a year like all the other meds I take.  NOWHERE on the bottle did the label say anything like that.

Keeping up with all the meds requires a secretary.  I don't know what happens to people who are too sick to do this sort of things for themselves and have no one to do it for them.  It's gonna be like this the rest of our lives.

[jbeany]

Yup, but if you don't pay attention - it will be a darn short life! 

[Riki]

maybe they're hoping it will be a short life.. so they no longer have to deal with you...

When I was a child, I remember getting a prescription refilled for a BP med.  The pharmacy gave me a generic drug, which they are allowed to do (but I don't know why) and I refused to take it, because I didn't recognize it.  It didn't look the same as the drug I had been taking.  I was 13 at the time, so my mom called my doctor, and he rewrote the prescription, and from then on, on the top of every prescription he gave me, he wrote in big, block letters, NO GENERICS.  I still don't know what that drug was.  It could have been fine, or it could have been anything, since I didn't recognize it.

I miss him.  I wish I was still under 18 so he could still be my doctor.. *sigh*

[kellyt]

maybe they're hoping it will be a short life.. so they no longer have to deal with you...

That is a fear of mine, actually.   I always fear that one day I'll receive a letter from my insurance that says "You cost us way too much money.  Find another carrier."   

I really like this specialty pharmcy I've been using since transplant.  In the past they've called me when they didn't get my faxed refill request on the 25th to remind me.  I thought that was really nice.  They've only done that once, but I still appreciated it.  And the ONLY reason I knew the P.A. "authorized" the generics was because the pharmacy called to warn me the pills would look different.  I think that's going the extra mile, cause I get my meds delivered UPS.  And once I get them they are mine whether I take one or not and my insurance would have already paid for them so they more than likely would not have given me more.  You know, the raging drug addict that I am to Prograf and Cellcept.   

I question so much that when the doctors office sees my number on caller ID I'm sure they do ROCK, PAPER, SCISSORS to see who will have to answer.   

[Riki]

I question so much that when the doctors office sees my number on caller ID I'm sure they do ROCK, PAPER, SCISSORS to see who will have to answer.   

I have a feeling that's what happens at my neph's office when my mom's work number shows up, but Mom only calls if there's a problem.  I think she bullied him into removing my central line in June, cuz I got a call earlier in the day from the head dialysis nurse who told me it wasn't happening that day.  I talked to Mom about a half hour after that, and she had gotten a different story from the neph's office, saying that they hadn't found a room in the hospital yet.  I got a call about 45 minutes after that from her, and she told me to get my shoes on, cuz she was on her way to get me, and the line was coming out. *L*  My mom can be very, um, persuasive when she wants to be. *G*

[kellyt]

I question so much that when the doctors office sees my number on caller ID I'm sure they do ROCK, PAPER, SCISSORS to see who will have to answer.   

I have a feeling that's what happens at my neph's office when my mom's work number shows up, but Mom only calls if there's a problem.  I think she bullied him into removing my central line in June, cuz I got a call earlier in the day from the head dialysis nurse who told me it wasn't happening that day.  I talked to Mom about a half hour after that, and she had gotten a different story from the neph's office, saying that they hadn't found a room in the hospital yet.  I got a call about 45 minutes after that from her, and she told me to get my shoes on, cuz she was on her way to get me, and the line was coming out. *L*  My mom can be very, um, persuasive when she wants to be. *G*

Good for her!!   

[okarol]

The whole topic of generic vs brand names is dicey when it comes to prescription meds. Y]Kelly, you were right to demand they give you what you had been getting, it should not be changed willy nilly without labs checking to be sure you are getting adequate trough levels.
That being said, the generic has the same key immunosuppressive medication you need and is cheaper (although I was surprised to learn its not a lot cheaper) the difference being the compound it is mixed with, which may result in a different absorption rate. That's why when changing from one to another you need to have labs over a few weeks to check it (and THAT'S not cheap!)
The name brand companies say "You have the right to insist on getting what your doctor prescribes, don't let the pharmacy tell you that you cannot have what you have always gotten." My response to that is this: It's not you or the pharmacist who decides what medication you ultimately get, and it isn't the doctor either. It's all decided by your insurance company, based on what is cost effective for them.
The brand name companies should just lower their price to be close to what the genreric costs. Then everyone could keep taking Prograf or Cellcept and not worry about changing. Well, that ain't gonna happen. 

[kellyt]

I agree with all that, Karol.  And I should add that if it were my doctor that had actually changed my scripts to generic my questions would have only been why? when do you want me to check my labs/levels? and what is plan B?

I am all for cheaper meds.  Right now I'm sitting in a good place, as Medicare has picked up my deductible for 2010 and my entire deductible was paid in three months just from medication!!   So right now I'm getting my meds "free".  Well, not "free", but nothing out of my pocket.  Beginning Dec 2011 that will all change.  One of the main reasons I'm trying to get my back fixed is so that I can go back to work part-time in order to pay my $3000 deductlbe once I lose Medicare.   

[Riki]

I wish Meds were covered here. Anything given outside of a hospital setting are not covered, unless they are life sustaining, so antirjection meds are covered, but nothing else is.  If I remember right, prednisone wasn't covered, but it's not that expensive.  All the bp meds I was on at the time, however, they were.  I didn't have insurance to cover them then.  I do now, so I'll only have to pay 20% of the cost, which is better.

on another note, flu shot will be given in dialysis, so covered.. Yay!

[rsudock]

Hello,
 Another way a doctor can help you get BRAND name medications is to write DAW (dispense as written) on the prescription. That way the doctor is telling them in no way is generic acceptable...of course my mail order pharmacy choose to send me generic cyclosporine even though the prescription said DAW on it...that poor pharmacists got an earful that day. Guess she didn't realize who she was trying to convice that generics  are okay. I think my exact words were, "I already called the doctor and he said he wrote DAW on the prescription. so my question is why aren't you doing your job and filling the script correctly. I had my kidney for 10 years and not going to chance it with generics now."

xo,
R

[rsudock]

Oh ps KellyT happy 2 year kidneyversary!!!

xo,
R

[kellyt]

Hello,
 Another way a doctor can help you get BRAND name medications is to write DAW (dispense as written) on the prescription. That way the doctor is telling them in no way is generic acceptable...of course my mail order pharmacy choose to send me generic cyclosporine even though the prescription said DAW on it...that poor pharmacists got an earful that day. Guess she didn't realize who she was trying to convice that generics  are okay. I think my exact words were, "I already called the doctor and he said he wrote DAW on the prescription. so my question is why aren't you doing your job and filling the script correctly. I had my kidney for 10 years and not going to chance it with generics now."

xo,
R

He has done that!  That is another crazy thing!       I really think that the nephrology office needs to have a meeting with the staff, especially nurses and P.A.'s, and explain that it is policy that NO transplant patient shall get generic Prograf or Cellcept (or whatever antirejection meds they happen to be on) EVER.  I know I'm not the only patient that was told no generic.  That's something that I think they should know if they are going to be refilling scripts when he is away.

And thank you so much for the kidneyversary shout-out!!        It was a lovely day and great celebration last night!  I have no voice today, but that' mainly because I've had drainage for a week.  I think I will be calling a doctor on Monday.  I don't want this to turn into anything bad.

[rfranzi]

I am with you. I have had to push so hard for simple answers from my doctors since this all started and I have expressed in this forum already how frustrating this is. But I if I have learned anything in the past it is to advocate for yourself. You cannot  count on any medical provider to be on top of your case these days, and you cannot blindly trust them to be working in your best interests. You have to be on top of every little thing and follow through with everything! I recently tried to get a referral for a dietician to work with at the NW Kidney Center. I hadn't heard anything in a week so I called the Kidney Center who claimed they still had not received a referral from the doctor. I called the doctors office and got the nurse assistant or physician's assistant, some woman on the phone. She said, and I quote, "your kidneys are not bad enough for a nutritionist" I am in stage 3 of ckd and my recent lab work had my gfr at 31, down from 39 in two months, heading for  stage 4.  I am trying to work on prevention and slowing the progression of the disease and only have two ways to do that, controlling blood pressure and diet. I went to a nutrition class that the kidney center offered recently and was given a wealth of information on how important diet is to this effort and how challenging it is to balance protein, potassium, etc. - not too much, not loo little....I could use help with meal plans as I use to eat very spontaneously. I plan to address this very off comment with my doctor the next time I see him and how inappropriate this was. I didn't get her name and I still haven't heard from the kidney center and have a sneaking suspicion that it was still not sent. I told her she was incorrect, that I had already been to a class and it is very appropriate for where I am at and she said she would send it. This was a new doctor I was hoping would be better, and I have serious doubts. I have yet to be able to say I like my doctor and I have been to three of them. Things are dictated by insurance companies who have no concern or responsibility for the patient's life. I truly want to try to enjoy the time I have and it is hard to do when your reality involves constantly having to deal with these insensitive idiots. In their defense, and this is a small notation, I can see that they are overwhelmed, largely due to insurance constraints and the fact that they are getting swamped with unprecedented amounts of sick people. All the doctors I have seen have all been very rushed all the time. So keeping on top of your information will help prevent medical mistakes that are costly to you in time and suffering and is just a fact of life nowadays. Seems like you have to do your own work and part of everyone else's job too. Oh well, it's good to say it like it is....And happy anniversary KellyT!

[kellyt]

I was never placed on a special diet or fluid restrictions (thank God), but I was fortunate enough to do really well up until transplant and avoid dialysis.  BUT, that being said, I wish he had sent me to a nutritionist and such because prevention and/or the slowing down of this disease is so important.  When you are at Stage 3 headed to Stage 4 fast I can see why you would want to see the dietitian and do what you can to slow this down.

Some nurses can be really annoying at times.  When the doctor is in the room they are so obedient (I know that's a strong word, but I think it works here) and professional, but when the doctor isn't around these same nurses act like you are putting a huge kink in their day and they are so much better equipted to handle your health then the doctor or yourself.  I learned self advocacy from this site, too.  VERY important!  I'm glad you learned that, also.   

[rsudock]

"Things are dictated by insurance companies who have no concern or responsibility for the patient's life."

Rfranzi - I have always said that insurance companies won't be happy until we are all dead! I agree doctors are rushed but they shouldn't forget we do keep them in business. The second dialysis doc that I met told me, "Sorry I couldn't stop into the unit to see you your first time on D, my kitchen is being remodeled." The next day I put into a transfer to a different unit....hope his kitchen was nice...jerk! 

[cariad]

When this sort of thing happens to me, I lose it. I am so fed up with insurance companies (and healthy people/people already covered by government insurance telling me about the evils of socialized medicine) that my mouth just switches to auto-response. Many times when I am rattling off everything they are toying with, I listen to myself for a minute and wonder how I am getting all of this information out so quickly and precisely.

Two weeks before my transplant, Anthem said I had been dropped from insurance and that if I wanted my meds that I had just run out of, I would have to pay $500 to the pharmacy. They apparently did not get the papers for my disability extension. I was so furious Gwyn and I spent an hour on the phone with this woman and I told her in no uncertain terms that I would sue this company for everything it was worth. At one point I had the phone to my ear and went so ballistic I shouted across the room at my seven-year-old "This company wants to kill your mother, Aidan! You have to understand this, this is how these companies operate!" and I went on from there. Aidan was stunned, he just sat there with his mouth open. 

The bills have only just started coming in, and so far Anthem owes Northwestern doctors over $20,000.

[rfranzi]

Really appreciate the feedback, it makes me feel sane! When I am dealing with medical providers and I advocate for myself, I get this look like I should just go away, like I am annoying them. I feel like a flea sometimes, pestering and relentless. And honestly I have no energy for anything else, I can't remember the last time I looked forward to something fun or felt any joy. Sometimes I wonder if it is worth it, but then I press on. I called the nutritionist today, they still hadn't gotten the referral. I called the doctors office and was transferred to an extension that rang over 40 times with no answer. I put it on speaker and let it ring after about 15 times thinking someone would pick up, but after a while realized none was. I called back and this time got a machine and found that they were gone for the day. I will call earlier tomorrow, didn't know I couldn't reach them after 3 p.m. It's been weeks now and even the nutritionist said it shouldn't take so long. She also said she had never heard of anyone saying a patient wasn't 'bad enough' before. Aaargh. As we Italians say, not for nothing.....Anyways, thanks for letting me know I am not the only one who gets these inane comments and half hearted practitioners. I hope to have some more pleasant news in the near future, even if it is just that someone did their job and I didn't have to call five times and make several appointments to have a question answered or a form faxed.

[Scarlet]

One other thing that you should also keep in mind, when they switch you to generic drugs, sometimes the binding agents used are VERY DIFFERENT.  I remember once when they pharmacy, the hospital pharmacy no less, subed in generics for brand name bp meds on my momand she had the worst migraine I had seen in years.  It lasted two days!@!

I ended up taking mom to the emerg and the nurse there said "this medication does have that reputation for causing migraines"  WTH?

Silly me, I would think that the hospital where she did all of her treatments, who had an EXTENIVE file on her that listed SEVERE MIGRAINES would have known better......you have to watch out for your self!!

[kellyt]

That's horrible, Scarlet.  A migraine that lasts for two days would be pure torture!  I could not even imagi