I'm so happy to say that transplant clinic visit went great yesterday and Stephen's white blood cell count (WBC) was back up and in a normal range, his creatinine is a perfect 0.3, and everything else looked super-terrific! On top of that great news, the trip up to Philly went great (minus the horrendous traffic) and our Mom/Son sleepover at The Gift of Life House went great. Stephen didn't go crazy Sunday night when I put him to bed in the pack'n'play which was a HUGE sign of relief for me. I was dreading the trip just because the previous week's bedtime went so horribly, but he did great this week and behaved himself pretty good during the long doctor's office visit and we hit the road for a visit to Mimi and Poppy's house in York by noon. And yesterday afternoon I received some additional good news from Amber Pharmacy, our new specialty pharmacy, which made the day twice as great. It was such a relief because our end to the previous week (Friday), was just the opposite. Friday was a no-good-terrible-bad day. It was probably one of the worst days I've had from the standpoint of insurance/pharmacy issues, and I've had some real hum-dingers in the past when Stephen was a baby.
If you remember from my previous post about Stephen's WBC issues, you know we were waiting on the arrival of a new medication called neupogen which would help boost Stephen's WBC and keep him out of the hospital. Well, it days to get the prior authorization completed and then there were some major hiccups between folks at the pharmacy and I was told a lot of conflicting information about what insurance information they had, when the drug was shipped, whether or not the prior authorization was complete, etc. Finally, it got straightened out on Thursday (I should have had the medication by Wednesday) and it was over-nighted to me, along with Stephen's cellcept medication (one of his super important anti-rejection drugs) for Friday morning delivery so that Stephen could get one dose Friday, one on Saturday and one on Sunday before we drew labs on Monday (these are shots in his thigh). But when the medication showed up on my doorstep Friday morning, I realized it hadn't been shipped improperly rendering the medication useless because the medication has to remain cold and someone had packaged it in last week's crazy heat with one measly little ice pack. And as such, the medication was hot; not cold. That was the first thing.
Then minutes after realizing this, I received a phone call from the same pharmacy saying they incorrectly filled Stephen's cellcept prescription. The person who had filed it with insurance didn't know what they were doing and should have known that the pharmacy is no longer filling this medication. Say what?!?! It's a very long story...but the gist is that Medicare only reimburses the pharmacy for generic brand cellcept. But there is no generic for the version of cellcept that Stephen needs (liquid suspension so that it can be given through his g-tube), but Medicare will still only reimburse for the cost of generic and as such, the company can't take the financial hit of the difference in the cost of the medication. To say I was beside myself is an understatement. I know I get myself worked up about these things and it probably doesn't help the situation, but when a pharmacy, who specializes in transplant drugs, tells me they won't fill my child's medication; the medication he HAS TO TAKE NO MATTER WHAT in order to keep his transplanted kidney, I go a little crazy. I then proceeded to spend all day trying to come up with a solution and an alternative way to get around this and a different pharmacy to fill the medication.
By the late afternoon, I was so beyond frustrated that no one had any answers for me and finally called and spoke with the billing supervisor who again explained the situation to me that the company had made a "business decision" not to fill cellcept for those patients needing liquid suspension brand name cellcept. And on one hand, I do understand it's business, and they do have the right (I guess) to say they won't fill a prescription, but on the other hand, I just don't think it's the right thing to do, so we would be taking our business elsewhere.
But that great news I received yesterday afternoon came from the same pharmacy I was cursing; the decision makers at the company had changed their minds, reversed their "business decision," and would fill Stephen's cellcept going forward. A huge WIN for Stephen and for me!!!!!! So, I'm happy to eat my words and say "thank you" a million times over to Amber Pharmacy for making the right decision. And even though we had some major hiccups the past two weeks, I greatly appreciate them admitting their mistakes, working to fix them (they overnighted me more neupogen packed in a cooler with lots of ice packs), and making a great decision on behalf of their patients. So...if there's anyone out there in need of a compounding/specialty pharmacy, please check them out (they ship nation wide for free from their pharmacies in Nebraska, Illinois, Texas, and Pennsylvania)! And tell them Stephen "Superman" Schwartz sent you :)
In other cool post-dialysis/post-transplant news.....Stephen's now wearing big boy pajamas!!! Now that he no longer has his dialysis catheter, there's no reason why he can't wear regular pajamas. he still has his feeding tube connected at night, but he doesn't pull it. The problem with the snap pj's was actually that it was so difficult snapping and unsnapping them all the time to remove the extension tube, that we would just leave it on after bath time and dinner, but Stephen's so incredibly active now that he kept stepping on it and yanking it out! So now with the two-piece pj's, I can easily take his tube off and on, so no more yanking the tubie out. I went a little crazy buying pj's the other day at Old Navy, but I was so darn excited I just couldn't help myself and with no sales tax in PA, it was a no-brainer. Plus they're so darn cute!!