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”).