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Author Topic: More proof to "be your own advocate"  (Read 3445 times)
kellyt
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« on: February 12, 2009, 02:47:03 PM »

This is a semi-rant, but with a satisfactory conclusion (meaning it was handled without further distress to myself   ;D)

I called in my monthly medication refills on Jan. 29th.  Due to insurance they didn't process the request until the 2nd and I received my scripts via mail on the 3rd, which is right on time for the majority of my medications.  One of the medications I ran out of when I took my last one that morning was my Famotidine (Pepcid), which I take 1 pill, twice a day.  So when I received my refills that afternoon I promptly filled by pill box for that week, the 3rd - 9th.  On Tuesday the 10th I sat down to fill this weeks medications which went from the 10th - 16th.  It was at that time I noticed that as of the 16th I only had 13 Famotidine pills remaining, which would have only taken me through the morning of the 23rd.  ???  I'm supposed to get a 30 day supply, Qt. 60, every month.

Anyway, I don't know how they (CVS Pharm) calculated my refill, but I called the pharmacy on Wednesday and told them as of the 16th I only have 13 pills remaining, which isn't enough to cover the remainder of the month.  They addressed the problem immediately, although they offered no explanation as to why I was shorted, and mailed me 14 pills today at no additional charge.

I've always taken it for granted that I get the correct # of pills.  I guess I need to add to my list of self-advocate duties "Count your refill pills every month".  Anyone else do this, cause it's a lot of pills!!!    :stressed;

Due to the fact that they've cut back my Prograf since transplant, I have a small surplus of Prograf.  I also have a big surplus of my Prednisone, as I've been cutting back on that as well.  I didn't even refill my Prednisone this month.  Saved me $10.  :)


Keeping up with your post-transplant medications is a part-time job!  Can I get an Amen?   :bow;






EDITED: Topic moved to appropriate section - Bajanne, Moderator
« Last Edit: February 12, 2009, 10:15:52 PM by bajanne2000 » Logged

1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
monrein
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« Reply #1 on: February 12, 2009, 02:56:17 PM »

Amen.  I've been shorted before too but I keep on top of what I have and I also have a wonderful pharmacist.  His staff is often quite clueless but Mike is great and will deliver stuff to me same day if need be.  I get three months of meds at a time (of the ones that are constant anyway) and make sure I don't get below a couple of weeks worth of all my meds.

Good outcome Kelly.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #2 on: February 12, 2009, 03:18:58 PM »

 :2thumbsup; AMEN Sister!

I am stockpiling anti-rejection meds for when Jenna's Medicare runs out. They had reduced her dose but the pharmacy keeps sending the same amount, so it's a good mistake.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #3 on: February 12, 2009, 03:22:47 PM »

CVS bought out my mail order pharmacy and after that, I had the same problem as you. Sometimes they left a note, sometimes they didn't. I always had to call them back to make sure they didn't forget to send it too because they have. After so many of that problem and twice of another, I switched pharmacy's, using one of Medicare's. So far I have had 1 of this problem from them and they left a note, but never shipped it and lost any note of it in their computer. I had o fight with them to send my Prograf, but luckily I had extra. I have been with 4 mail order pharmacies so far and not until my 2nd mail order pharmacy was sold did I begin to have problems. So maybe with these big company pharmacy's it is not always the best service.

Always read your invoice and you bottles to check for any errors.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Wenchie58
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« Reply #4 on: February 12, 2009, 03:31:44 PM »

AMEN all over the place! I feel like I live at my neighborhood pharmacy!

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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
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« Reply #5 on: February 12, 2009, 03:50:00 PM »

Great advice, Chris.   :2thumbsup;
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kellyt
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« Reply #6 on: February 12, 2009, 04:07:29 PM »

:2thumbsup; AMEN Sister!

I am stockpiling anti-rejection meds for when Jenna's Medicare runs out. They had reduced her dose but the pharmacy keeps sending the same amount, so it's a good mistake.

That's a good idea.  Generally, what's the expiration on these meds?  Two years?

Also, I plan on going to a three-month supply as soon as they authorize me.  They don't allow it in the beginning, as they want you to be dependent on them for a few months.  I totally agree with this system (not for me, necessarily), but you know there would be people who get three months of Prograf right after transplant and then never show up at the clinic again until they run out.  I would be that foolish!

I'm so glad you all are on my side!  I'm going to go count pills now to make sure I'm covered until March!   ::)
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
pelagia
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« Reply #7 on: February 12, 2009, 04:08:37 PM »

We have been using Medco mail order for a couple of years and so far they have been really good.  It's the pharmacy for state employees and we can log right in to our account and do everything online.  I can even print out the record of what we ordered for the year and what we paid which is handy for using the flexible reimbursement account and for our tax records.  The local pharmacy was more problematic - would give us a short scrip and then when we would call they would say, oh yea, we didn't have enough and we'll let you know when it comes in.  Well, maybe, just maybe, they should tell you that when you pick up the prescription.  Sometimes though we still have to use them because we need something right away.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kellyt
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« Reply #8 on: February 12, 2009, 04:22:51 PM »

This CVS Pharm is a "specialty" pharmacy that the transplant hospital has used for years.  They recommended them because they "always have the anti-rejection meds in stock", as opposed to my regular grocery story pharmacy who would probably have to special order the meds and then I would be asking for all sorts of problems.

I'm definitely going to stay on top of this and if it keeps up there is another specialty pharm that I can use and they also mail scripts and no charge.  I will change in a heartbeat if necessary.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
peleroja
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« Reply #9 on: February 12, 2009, 04:44:24 PM »

Great post.  It never occurred to me that pills might get shorted.  I don't know if Kaiser ever does something like that, but with prices going up and up, for darn sure we better get what we pay for.  Looks like I need to start checking. 
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pelagia
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« Reply #10 on: February 12, 2009, 05:39:07 PM »

Stephen's first round of drugs came from another mail order pharmacy called Amber Pharmacy http://www.amberpharmacy.com/.  They also specialize in transplant drugs.  Since we're in the state plan, we had to switch to Medco in order to get the better pricing on our plan.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #11 on: February 12, 2009, 09:56:18 PM »

I first used Amber Pharmacy and then my transplant center had me try a local run  mail order pharmacy out of Chicago that was great. Unfortunately they were bought out by CVS and wanted the pharmacist to take a big pay and benefit cut. Lost two good pharmacist and got crappy service. I have had to use the local pharmacist to get my anti rejection meds, but as kelly said, they just don't carry enough. One time I had to have the pharmacy track down one of their branches who had them and drive there to get them.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
paddbear0000
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« Reply #12 on: February 13, 2009, 06:36:33 PM »

I was using a CVS pharmacy for a while a few years back, but they were nothing but trouble. Since moving here to Ohio, I've been using a local pharmacy that has a few stores. I always go to the same store though because everyone there knows me very well. They even recognize my voice on the phone. When I get my transplant, I will continue using them too. I refuse to ever use a mail  order pharmacy after the problems I had in the past with one and my diabetes supplies. With mail order, you can't get problems fixed right away. My pharmacy is right around the corner from my house, which is very convenient, and they will order anything I need (even OTC stuff) right then and there and I get it first thing the next morning. They already told me they will keep my transplant meds in stock when I get my transplant.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
kellyt
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« Reply #13 on: February 13, 2009, 07:59:06 PM »

Have a Plan B, especially if they are keeping them in stock just for you.   These drugs a wicked expensive.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Chris
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« Reply #14 on: February 13, 2009, 08:37:31 PM »

Even though they say they will keep them in stock, will they have enough for you when needed. You never know if someone else may come in and need it to. Always have a back up plan.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Romona
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« Reply #15 on: February 14, 2009, 12:31:00 PM »

I am afraid to use mail order. I know it would be much cheaper. I use a Rite Aid pharmacy that knows me well. I haven't had trouble with Prograf, but sometimes they get short of my Ritalin. They have quite a few branches close to me, so I can always get what I need. They are always so helpful and great when I have questions.
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Wenchie58
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Always carrying the big silly grin!

« Reply #16 on: February 14, 2009, 12:36:54 PM »

I use Rite Aid also. They have been jumping through hoops for me with all the med and dosage changes.  I can't say enough good things about them.
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
Restorer
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« Reply #17 on: February 14, 2009, 02:21:29 PM »

I use Walgreens, and I don't usually have trouble with things being out of stock. I'm thinking this might have to do with: 1). It's the only Walgreens in the area, so everyone who prefers Walgreens comes to this one; 2). Plenty of older people live in this area, with all the accompanying medical problems, so drugs to treat common diseases of age are more often in stock.

At least that's my theory. :)
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
kellyt
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« Reply #18 on: February 14, 2009, 02:35:53 PM »

I've never used Walgreen's, but it would seem they would have it more together than a grocery store pharmacy, which is what I used before transplant.  Even though my grocery store pharm always did a good job for me in the past, I don't want to risk it with my post-transplant drugs.  Plus, my grocery store pharm does not deliver or mail.  I feel so pampered getting my meds via UPS.

I plan to do the 90 day scripts in the future.  I've had a good experience with Right Source in the past.  I'll hopefully use them if they provide these meds.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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