This topic contains 21 replies, has 4 voices, and was last updated by  Jen Cueva 2 months, 1 week ago.

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  • #18901
     Colleen Steele 
    Keymaster

    Our insurance just had us switch to a new specialty pharmacy. This has happened several times both during my son’s PH days and post-transplant. I find it a stressful experience because I never know what the new experience will be like. I placed an order for the first time yesterday with the new company and so far I like them. The person I talked to was kind and patient and made sure she got the many, many medications that my son is taking, correct. The first shipment arrives on Monday and the next step of transition is going through all the medications carefully to make sure there aren’t any concerning changes.

    The good news is instead of dealing with 2 pharmacies we are only dealing with one. However, I will miss one particular woman who has worked with our refills for many years. I called just to tell her we had to switch and to thank her for always being so sweet and caring during every call. I felt sad even though I never met her.

    It’s funny how easily attached to strangers we can become when dealing with illness.

    Have you experienced changing specialty pharmacies and if so, how did the process go for you? Where you happy with the switch or did you experience problems?

  • #18911
     Jen Cueva 
    Participant

    Oh no, Colleen! I can relate as I’ve changed Specialty Pharmacies three times within my 14 years! That isn’t bad, but as you mention, you do become attached to the people who you talk to each month and as needed for years. They become like family.

    I’m glad that you had a positive experience so far and I hope the transition will go smoothly. I know it can be a tad nerve-racking.

    I had the same Case Manager for several years with my insurance company. She left the end of last year and it was so sad. I miss her. I felt like we ” got” each other. Now, I’ve been switched a few times, so not sure who I will have long-term.

    • #18930
       Colleen Steele 
      Keymaster

      Thanks for understanding Jen. Last week the transition went well ordering 2 of my son’s medications, but now I’m holding my breath because they are supposed to arrive today and so far…nothing. I discovered today in attempting to refill more medications, that this pharmacy is split in two between commercial and specialty, so I have to call two different numbers depending on what I am ordering. I was on the phone for over an hour today clearing his 20+ medications with them.

      The pharmacy we just lost could do emergency refills by over-nighting, apparently this is not an option with the new pharmacy. They need a week’s notice. Two of his meds I had to do an emergency refill at Walgreens otherwise he wouldn’t have them in time.

      I know it will take some adjusting and I’ll feel less stressed as the meds arrive but for now, I’m anxious about the whole thing. At least the woman who helped me was very nice and helpful. That’s so important, that the person on the other end of the phone is helpful and compassionate.

      • #18931
         Colleen Steele 
        Keymaster

        Three of the medications that I was the most concerned about just arrived. I feel a little less stressed now.

      • #18965
         Jen Cueva 
        Participant

        Yay! I’m so glad things are look g good so far with the new pharmacy!

        I have 3 pharmacies, and it is often overwhelming. Once every few months, it seems like they decide to make changes. It would be less difficult if we only had one. But, I’m just grateful we have access to the medications we need.

        Hopefully, after the first few orders, things will run smoothly and you’ll meet new people. I hope those will be compassionate as well.

      • #18971
         Brittany Foster 
        Keymaster

        That’s great news Colleen! Are you using the specialty pharmacy for yourself too or just for your son’s medications? I know the high stress that comes along with making sure PH medications come in on time and all of that. That is such a scary feeling knowing something so important isn’t always in your control ! So glad that things seem to be moving in the right direction though. I hope you end up gaining trust as you use them more!

      • #19004
         Colleen Steele 
        Keymaster

        Brittany, the specialty pharmacy is just for my son. However, remember the “oops” moment topic from a few weeks ago? Well I experienced a new one while ordering from the new pharmacy. We went through the long list of medications and the one left that seemed to cause a lot of confusion was his inhaler. They didn’t have any information about the inhaler I was telling them he takes. Do you know why? Because I was giving them the name and dose of MY inhaler…not his!

      • #19008
         Brittany Foster 
        Keymaster

        OMG Colleen!
        That is definitely one of those “oops” moments ! I am so surprised that you are able to even keep track of your medications plus the long list of the medications your son is probably taking. That must be hard to juggle! Do you have notebooks or folders for the both of you with your medications etc listed ? I know that even thinking about my sisters and I and all of our various medications , surgeries, etc we have been through must get so confusing. my mom has color coordinated folders and a file bin for all medical information that is divided up into all 3 of us. Otherwise, I really don’t know how she would keep track of it all! I guess that is filed under the “list of parenting duties that they don’t prepare you for” haha!!!

      • #19011
         Colleen Steele 
        Keymaster

        Brittany, I keep a laminated, extensive list of his medications, dosages and schedule. It’s on our fridge, with is meds and I carry one with me. The inhaler is fairly new and it wasn’t until I was placing the order that I realized I haven’t added it to the list yet. So, I grab the inhaler that I see on the table and start reading it off to the pharmacist. I was on the phone with them for an hour and I’m just going with the excuse that I was exhausted. Luckily it finally clicked that I was looking at my inhaler and not my son’s. The woman on the other end was patient and I think relieved that we figured out the discrepancy.

      • #19012
         Brittany Foster 
        Keymaster

        You sound like my mom with the organization skills! Sometimes the “brain farts” like that happen! Especially if you are under stress, which dealing with the pharmacy in itself is a stressful situation! But I’m glad they seemed to be patient and I bet they were very relieved when they realized it wasn’t a fault on their end or something that was missing from their list! I’m sure that would have made a lot more work for them if it was! Glad you got it figured out though!

      • #19017
         Jen Cueva 
        Participant

        Wow, Brittany, your Mom as well as Colleen and the other moms must be overwhelmed, to say the least. Those organizational skills sound like a must, even if they may be acquired along the way.

        Great job to all the moms out there as I cannot even imagine. I do good keeping my meds updated and paperwork organized, printed out, etc.

      • #19016
         Jen Cueva 
        Participant

        Oh No, Colleen! I can definitely see how easy this can be. Oops…no worries, you had quite a bit on your. plate just switching his medications.

  • #18980
     Rockefeline Denis 
    Participant

    I went through it but it wasn’t a bad experience. I’m dealing with 2 specialty pharmacy instead of one. So far so good. All we need is to get our medications on time. Have a great ladies!

    • #18984
       Brittany Foster 
      Keymaster

      I’m really glad that both of your pharmacies are working well for you! It is good that you are getting your medications on time. Do you have to call in each month of is there someone from the pharmacy that calls and talks with you? Just curious about how it works ! My specialty pharmacy is through CVS where I get a few of my non PH medications from that need to be special ordered. There was an injection I was supposed to do BEFORE I had my ovaries removed and it just took FOREVER to come in to the point where it wasn’t worth the wait and it gave me a really bad first experience.

      • #18993
         Jen Cueva 
        Participant

        @brittany-foster, For my specialty pharmacies, one calls me about a week or so before I call them. It’s just a reminder. One sends a reminder email and another, we’ll, they leave it up to me. 2 out of the 3, I have to call and speak with someone each month.

        The other one is more of an automated system.it us much less time-consuming.

      • #19000
         Brittany Foster 
        Keymaster

        I can only imagine how time consuming something like that must be! Sometimes it takes me about 30 minutes waiting on the phone just to get someome to answer from a doctors office. Luckily there are also the doctors that I have where the secretaries know who I am and if I ask to speak with my doctors they just usually hand over the phone and track them down, so that’s worth the wait lol! But sitting on phone calls could literally be a part time job!

      • #19018
         Jen Cueva 
        Participant

        Ohh Yes, been there too, Brittany! Often, I feel like this is a full-time job in itself. Calling all of the doctors, nurses, and pharmacies. Don’t forget any insurance and other issues.

  • #18986
     Rockefeline Denis 
    Participant

    Sorry to hear about that bad experience. Sometimes we have the impression that people don’t care or don’t understand our disease.
    I’m with CVS as well and Bayer. Bayer will call me every month but I have to remember to call CVS. I had my left ovary removed as well. Their nurses are never on point. I have to call yo let them know that I haven’t seen her for my 6 months visit.

    • #18992
       Jen Cueva 
      Participant

      @rockie436, it sounds like you have had good experiences mostly with your specialty pharmacies. I’m happy to hear that!

      As far as your nurses, it seems like they may need reminders themselves, lol. As long as y’all make it work. If it was my nurses, I would mention that detail to them or the doctor. Maybe they don’t think they miss calling you. As you mentioned, often we tend to feel like they may not care or maybe not think our health is important. We are and we must advocate for ourselves.

    • #18997
       Brittany Foster 
      Keymaster

      I definitely go through the whole “people don’t get it” phase. This just ends up leaving me feeling frustrated with anyone and everyone! It makes me feel like my care isn’t important and that I don’t deserve to feel heard. I know this is far from the truth, but sometimes my frustration clouds my judgement for sure ! I’m sorry you had the crummy experience and had to stay on top of them for the phone calls and check in! I wish it was something that we didn’t have to add to the list of things to make sure others are doing correctly and in a timely manner. I feel like so much of my time is spent on phone calls. It can get aggravating.

  • #19006
     Colleen Steele 
    Keymaster

    We have dealt with more that one specialty pharmacy at a time in the past. In fact, the year prior to my son’s transplant he had 3 specialty pharmacies plus Walgreens. I felt like I was constantly on the phone filling prescriptions.

    So, in the process of switching to this new pharmacy another change is in progress that my son has tried so hard to avoid. It reminded the pharmacy and his doctor’s that, “Hey wait, this patient is 19 and we need to be communicating with him directly!” They let me handle this month’s orders and medical concerns but next month, they will contact him. This is what I will be addressing with my son tomorrow and I know he’s not going to be happy. It’s going to be hard for me too but I do think it’s important that he starts taking a more active role in this process.

    Keep us in your thoughts and prayers during this transition because I don’t think it’s going to be an easy one.

    • #19010
       Brittany Foster 
      Keymaster

      Taking over my medical care including something as “simple” as calling a doctor’s office to make an appointment was so hard for me when I transitioned care. I could remember just throwing the phone at my mom or while waiting on the phone for someone to answer I remember feeling my heart rate so fast. This was a huge trigger for my anxiety and it’s also something that I worked on with my therapist when I first began calling doctors and making my own appointments. Sometimes I STILL will do this in my therapy office. She picks up on certain behaviors and emotions I’m experiencing that may be making the call harder for me. Does you son see a therapist at all? This was something that really helped me with starting to advocate for myself.

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