Traveling with Cinryze

11 Apr

One of the things your Cinryze specialty pharmacy can provide is assistance on how to travel with Cinryze.

Although I haven’t yet availed myself of this service, I intend to do so for my first extended trip in five years coming up this May (hello Las Vegas!).

My understanding is they will provide you with a “traveling kit.” Exactly what this entails I am uncertain, but I was informed about it’s existence by my CareMark nursing case manager, who is also knowledgeable about FAA regulations, etc., and I intend to pump her about all the steps, details and necessary supplies in the upcoming weeks, and I promise to post everything I learn (and any “lessons learned” afterward, too).

Some of you may not know your specialty pharmacy can also provide more than just your Cinryze, sterile water, the double-ended needles to combine them, and the syringes to extract the combined product. They can also provide butterfly needles and all the supplies required to access your portacath, including pre-filled saline flushes, pre-filled heparin flushes, alcohol wipes, sterile drapes, sterile gloves, sterile dressings, chloraprep or betadine swabstiks, huber needles, microclaves, biopatches, skin prep protective wipes, etc. If you’ve been getting these items separately from a medical supply company, why not combine them with your Cinryze shipment and get everything from a single source (providing this is acceptable to your insurance company, of course, as it was with mine).  Trés convenient!

Your insurance, specialty pharmacy, Cinryze and other case managers are excellent resources and are there to help you with exactly these types of questions, and (because they may not always think or have time to volunteer information), it NEVER HURTS TO ASK (two of my major tenants in life are “never ask, never receive” and “there are no stupid questions”).

4 Responses to “Traveling with Cinryze”

  1. Red April 12, 2009 at 12:50 AM #

    Ugh. As I know the insane amount of meds that I end up having to take with me anywhere I know yours is double that quite easily. I feel for ya. At least on a positive note you do have the ability to travel and such now, and Vegas! I am so jealous! Been trying to get out there for a couple of years myself but stuff keeps coming up!

    **luv, hugs and no swell**

    • Faerie♥Kat April 12, 2009 at 5:04 PM #

      I’m also taking a side trip over to Utah to see my beloved Grandmother,
      after my step-mother’s wedding the first half of the trip. I’m eager to
      see the “new” Vegas; I spent a lot of my “youth” in Utah and I haven’t
      spent much time in Las Vegas since they revamped everything. Las Vegas was
      my Aunty Patsy’s “Mecca,” and it was a favorite stop on the trip between
      wherever we were living in California and our grandparent’s home in Utah.
      I wonder if penny slots at every table in every diner are still the norm;
      we used to play them as kids. Now THAT was REAL family entertainment!

  2. Nicole April 12, 2009 at 10:41 AM #

    Hi! How long are you going to be gone for? I hope everything goes well for you so you can enjoy your trip 🙂


    • Faerie♥Kat April 12, 2009 at 4:57 PM #

      Just for a week, which will be four treatments (I infuse every 48 hours).
      From your lips to the Faerie Queen’s ear, here’s hoping everything goes

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