11/10/13

Prescription madness...

On Monday when I went to pick up Carla's cyclosporine (rejection med) and all they had was an off brand.  We are not supposed to switch brands because it can mess with levels and levels of medicine in her system at all times are what protect her heart from her body attacking it.  I didn't know what to do, because I didn't have enough of her medicine at home to dose her the two more times it would take before they could get the proper cyclosporine.  So, I left a tearful message on the heart transplant coordinator line, sent them an e-mail and called my hubby.  After talking to Bobby I called the transplant line again and was able to reach Pam (one of the best nurses of all time).  She said that she would call the pharmacy and that we would get it all worked out.  I went grocery shopping and then called Pam back.  No one in Great Falls had what we needed, so we were going to have to take the off brand cyclosporine and then have Carla's levels tested in a few days.  So, back to the pharmacy I went. Monday night when I gave Carla her meds she had a really hard time with the new cyclosporine.  She gagged, almost puked and screamed that it was burning her tongue.  Same thing Tuesday morning, Tuesday night, and Wednesday morning.  I sent the transplant team an e-mail asking them if Carla could switch to a capsule instead of the liquid, because she was having a really hard time with the new cyclosporine.  That afternoon hey said that she could!  So, Thursday they were going to fax over Carla's prescription and then we were going to wait until closer to the end of the month (because of insurance) to pick up the pills.  Thursday night Carla was so resistant about taking her meds it was heart breaking.  She said she thought she was ready to die, rather than take that yucky med.  (We tell her she has to always make sure and take her medicine because it is what keeps her alive and well.)  So, my heart breaking for her, I called the pharmacy and left a message that I needed to fill that new cyclosporine in the form of capsules ASAP and that we would just pay for it out of pocket.  Friday morning we had to go to the GF Clinic lab for some blood work (checking levels) and so stopped in to the pharmacy to see what they could do.  They said they hadn't received the new prescription!!!  So, I sent Children's an e-mail, left them a voice mail and then headed over to the pediatrician because Carla had been sick for a couple of weeks and that morning her runny nose looked like infection snot.  [Speaking of her pediatrician, I cannot be more grateful for how well they treat us!  I called Friday at 8:00, told them we were in town getting labs drawn and they said to just bring her on over when we were done.  They are so good to us.]  The pediatrician ordered an antibiotic and I took Carla home, got ready for work and then went back to town.  When I got to work I called the pharmacy and they said that they had received the new prescription, but that the dose on it was wrong and that they had left a message with Children's about it...  I'm thinking, are you f-ing kidding me! So, once again, I emailed Children's and gave them a call (I never know which is the best way to reach them so I tend to do both).  I spoke to Jason (another coordinator) and he said that he got the pharmacy's message but that he wouldn't see the doctors until later in the afternoon.  I reminded him that they are an hour behind us and that our pharmacy closes around 5:00 and would be closed all weekend.  He said that he would see what he could do.  When I got off of work I ran over to the pharmacy and picked up Carla's antibiotic.  They still hadn't heard back from Children's and at this point, I figured we would be having to suffer through the yucky med for the rest of the weekend.  Drat.  And then, after driving the half an hour home, I got the call from the pharmacy.  They have the meds!!!  I asked what it would cost and they said there was no co-pay!  Yay!  Finally, the Universe threw us a bone!  :)  I rushed back to town and picked up the new cyclosporine.  We will have to do labs again on Wednesday, to make sure her levels are still ok, but she takes those giant capsules like a total champion!  I couldn't be more proud of our little trooper.   This weekend med time has not been a fight and she is starting to finally get a little better from the cold she has had for a couple of weeks.   It has been an incredibly stressful ride, but I think we finally have her medicine figured out.  

Until next time....

Jen

1 comment:

Shawn Boe said...

Thank Heavens, she is such a little trooper. And so is the rest of the family. My heart goes out to you all. And I keep you in my thoughts and prayers.