Problems with getting my enzymes...

[tessa55454]

I have a question...hopefully people have some ideas for solutions, etc...

I had a huge fiasco with getting my enzymes yesterday. I called two days ago to refill my enzymes ( just want to say that I am planning on having the enzymes to be on a mail order basis, but somehow, of course the form got lost in the mail, so they are sending it out again..good times.) Well, the nurse didn't
call-in to the pharmacy for a refill on Thursday. I called about two situations, and the nurse called me back re: one of them which was great, but didn't say anything about ordering my drugs in. Time I called back, because of course I was in a class, it was too late in the day. I called back the next day, CVS couldn't get it until Monday. I only had enough through mid-day Sunday maybe.

So, I asked the pharmacy which is CVS (huge chain like Walgreens) if other ones had it. There are literally 100-150 CVs probably in the area. You can't go 3 blocks without hitting one practically. They said they
called a couple, but they didn't have it. I called the main line on the internet, but they don't have a data base on all the CVS's. She gave me the number for a couple major ones with 24 hour access, they didn't have it either.

Finally, I called Brigham and Womens' hospital, which is a huge
facility. They had it, but wasn't sure if they took my insurance. I told them what it was, and they said
we do take that, but "I have to see you card." I said to them that I have to know, because if you
don't, I have to find someplace else to get these by 5pm (which is 1 at that time). She said she had to see the card, so if I could stop by. Luckily I wasn't working yesterday, what would I do. I really dislike how the world runs on this 9-530 thing, like we have to be SUPER HUMANS!

I called and have left two messages with the nurses at the hospital that screwed up (which i know people make mistakes, but I have a list of drugs they can make mistakes on, but not this one). At this point they had not called me back, and 2 hours had past by this time.

I called another hospital, they said they had it and could take my insurance, but the doc or nurse has to call it in. I am like, o.k. . this is probable if the nurses call me back. Well, after that call I got a call from the nurses and they said they would leave me some enzymes at the front desk after 5 to get me through the weekend. They had a bunch of sample bottles.

Thank goodness that I have some drugs, but what a mess. I worked on it for 2 hours on the phone
total. I am going to complain to CVS, because the lack of help from them. Here I am calling around, while time is ticking away.

hopefully this doesn't happen again, but I am not betting on it. I forgot that there is a CVS at Childrens Hospital, I imagine they probably had them in stock. IT is just ridiculous. The other clinic that I went to, they would order it, if they were closed by the time it came in, they would transfer the script to the ER pharmacy where I could pick it up at any time. That worked perfect overall, I got them.

The nurses I called, that was the only line. I could page my doc, but sometime she's not in clinic. I usually order more ahead of time, but I was waiting for the perscription to come in the mail for i could do the mail order bit. Plus, if the drugs were ordered on Thursday, they would had been there by Sat.

I live in Boston...any one live in the area? just curious..maybe people have ideas that live around here, or in general...

thanks... it was such a waste of energy and time, it shouldn't have to be that hard... Again, I am so thankful I have them. People just don't get it that I can't eat without them, let alone I am diabetic..hello...

Tessa w/cfrd

 

[anonymous]

I have been having similar problems. In Jan. the manufacturer quit making the Pancrease I had been on for 27 years. I switched over the Ultrase, and no one - I repeat no one seems to have them in stock in this city of 100,000. Two months ago I ended up scrounging for some enzymes to get me through - and yes it is frustrating and exhausting. This month the same stupid thing happened again (thought it went well last month that I wouldn't have a problem). Target has my script, apparently their distributor doesn't carry it so they have to order from another place, but yet they told me they now had a spot on the wall so they would keep it in stock. Duh, I am going to be on this every day forever - why does it have to be so screwed up.

I feel your frustration. I used to order from Merck, before my insurance changed, three months at a time - was that ever nice, and they always had my prescriptions.

Hope you never encounter this problem again.

 

[anonymous]

Tessa, this may be considered somewhat unorthodox but this is what we do for Mark because that fiasco happened a few times. We had the doctor up his RX need by about 175 pills a month (He just told the doctor that he was taking more with each big meal and more with snacks and it added up to about 175more), so even though he didn't really up his intake, we have those extra pills left over so if our RX is lost in the mail, we can't get ahold of the doc to order it....we have that back up. It's an idea, it's worked for us for a few years now.

Julie

 

[tessa55454]

Thanks Julie. I have done that in the past, which works awesome. My doctor has actually volunteered to do that with me, which was really nice with him. When I do the mail order, I think it will be easier, I hope.

At my last job the pharmacist wasn't filling my drugs correctly, and I have had numerous conversations on how I am not getting enough enzymes per month. I have just finally staightened that out, cause usually I have extra. I do keep a stash for incidences like this, and now I have used it.

I have gone some places that they automatically fill it for 3 months and then sometimes I can barely get a month. It's really annoying.

Anyway, I appreciate you thoughts. I am going to start hoarding them, that's what I am going to do. When I start the mail order, a 3 month order is really like 4 months for me. So, I am going to have 10 stash's instead of 5. <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks,
Tessa 27 w/cf

 

[anonymous]

sounds good, sometimes you have to work the system before it destroys you. I would certainly recommend the stash and then fill every 3 months, regardless if you have extras or not. They are good for a year (sometimes more) so every 2-3 months change out your stash. Better luck to you. I have had a handful of medical staff problems lately too-nothing nearly as imortant as yours (or the consequesnces that would come with the negligence of the staff in your situation) but it is still so very frustrating. I feel like the customer service and work eithic of the US is just going down the toilet.

Julie

 

[anonymous]

I, too have had problems getting Ultrase. I would call in a refill, drive the 10 miles a couple of days later to get "Huh?" type responses and then it took over an additional week to get them in, so I did without during this period.
Well, when the doc got ahold of this information, he informed me to come get samples next time and not to go without. I guess that thought hadn't occured to me??
I told the pharmacy to keep them in stock after this fiasco, (which was at least the 2nd time this had happened) because I would be needing them on a regular basis in the future.
It gets so frustrating sometimes<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[tessa55454]

yeah...people are dumb. I think keeping stashes is definitley the key.

I think customer service stinks because people don't like there jobs, or aren't getting paid enough to try to like them. I think probably us humans here on earth are tired overall with everything being automated and having to wait forever to talk to a real voice. I think technology is great, but it definitley has its downside. I remember a time when you picked up the phone and immediatley you speak to someone.

I believe our patience as a consumer have gotten tired, as well as the people on the other end get sick of it. The general population is probably more frustrated and angnst (sp?) and we mirror one anther overtime. The high demand to give great "customer service" is a basic requirment for a job, but it also is forced upon all the time. The pressure to stay competitive in the market with other businesses is extreme, so the end result: people are crabbier cause they are sick of it. While the general populatin is slowly educating themself to know they can go somewhere else. It all comes down to money really. this is of course just my opinion and observations.

Tessa 27 w/cf

thanks again...I am just glad I can eat.

 

[CollinsMom]

I have problems also with getting my sons enzymes and his other meds from CVS. we would go some were else but he has CRS and he can use anyone else b/c of them. It is very fustating. I try to get his meds a week before I need them b/c it takes them so long to get what they need. I have also had problems with them finding the meds after fillinf them.
Collins Mom

 

[thefrogprincess]

I usually have fewer problems if I call the pharmacy directly for my refill not the doctor/nurse. If you are out of refills the pharmacy will call the doc. It is not unusual for pharmacies to not stock normal CF meds because lets face it, on the grand scheme of things there isn't much of a market for it and if they stock enzymes, pulmozyme and such it would usually go bad before it got used.

 

[tessa55454]

thanks everyone. To comment on the last poster, frogprincess, I had to call the nurse/doc because my refills ran out. But, I am definitley changing plans.

Walgreens has a new thing that they automatically refill and call you with your prescription if it is standard. But, I am going to do the mail order, I hope it works fine. It's a lot cheaper.

Thanks again, I appreciate it.
Tessa

 

[Cutecurlz]

I'm not sure where you all are from but I lived in BC and now in Ontario and any prescription from the CF clinic including enzymes I got right from the CF clinic.

 

[tessa55454]

So, I am getting my first delivery of enzymes today by UPS. Decided to chuck the CVS route. Over 9 pounds of drugs, rock on.... How many people really can get 9 pounds of drugs and they are legal. CF is such a crazy disease.

thanks again for the thoughts and options..
Tessa 27 w/cf