Anyway, there have been some changes to the way things are run at PMH pharmacy. I found this out recently when I went in to pick up some tobramycin for Victor. He'd had a cough and we decided to start him on a two-week course of nebs (totally cleared up now). The first change is that PMH staff cannot drop the scripts into the pharmacy for you any more...so I had to arrive at PMH, pick up the script from Respiratory, then head upstairs, drop it into pharmacy, and then hang around for ninety minutes while it was filled. Naturally, this caused some annoyance.
Then when we went back on Thursday for our usual clinic appointment, I learned something amazing. Scripts no longer have to be filled by PMH pharmacy. That's right, I can take the script anywhere, to any pharmacy, to be filled.
What this means is that I no longer have to hang around for three hours, waiting for meds every few months. I can drop the script into my local pharmacy and have it filled there in just a few minutes. This is game changing! This is totally amazing!
But wait! Don't you know that if something sounds too good to be true, it usually is? Yeah, now for the bad news.
The problem with picking up CF meds from a regular pharmacy is that they don't generally have these types of meds in stock. I called our local pharmacy and asked whether they could get any Creon in for us. They said they could, and it would take about 24 hours to arrive. That sounded perfect to me.
However, when I went to pick up the Creon, they only had five bottles in stock...not twelve. They said the rest should arrive the next day. So I paid for the lot and took the five they had home with me.
The next day they called me and said that their supplier was actually out of stock.
Basically, this has turned from a three hour wait to an entire week of waiting, and just for one medicine.
I guess this is the reality of living with a 'rare' disease. Your local pharmacy pumps out thousands of boxes of antibiotics, contraceptive pills, antidepressants, heart meds, and various other remedies with speed and precision, every day. But we are living outside the norm. Most people don't even know what Creon is, let alone order it on a regular basis.
I'd really like to establish a good relationship with a local pharmacy: pharmacists who know us, know the family, and understand our (apparently unique) medical needs. I could rely on them to have our meds in stock each time (and really, I don't think that's too much to ask: we order the same thing, more or less, every three months, barring the occasional order of tobramycin). Is this feasible, or am I reverting to some small-town dream?
Another factor which may be worth taking into consideration is that with the load taken off PMH pharmacy, perhaps the wait times won't be as long there? Ok, don't laugh. I think we all know that's just never going to happen.
So which is it: 3 hour wait after clinic, or the ambiguity of not knowing when/if the meds will be coming in closer to home?
Hopefully we'll be hearing from them soon!