#freedom60

by Jessica Slade

I was diagnosed with CVID about five years ago. It was one of the happiest days of my life! Yep, you read that right. For the five previous years, from the time I turned thirty, my health had been declining rapidly...you know the drill...constant infections, then one disease diagnosis after another - Diabetes, Asthma, Cushing's Syndrome, Cholelithiasis, Interstitial Cystitis, crazy allergic reactions all of the sudden - you get the picture. I knew there was some underlying problem causing these other issues; doctors pretty much thought I was crazy when I told them that though. Or the few that believed me told me they couldn't help me. I was just too difficult a case for them.

The ironic thing is that after going to pretty much every kind of specialist you can imagine, a family doctor who practices just a few miles from my home is the one who listened to me, ran the proper tests, and figured things out.

I was immensely relieved and felt incredibly validated the day I was finally diagnosed! Not only that, but I also knew that help was on the way, in the form of immunoglobulin therapy! I had identified my enemy and I was strategizing against it.

When I was pregnant with my youngest, I had Hyperemesis Gravidarum. I was hooked up to an IV, confined to the sofa or the bed, basically miserable; but it's relevant to this story because I had a Zofran pump in my thigh for about six months, which gave me a point of comparison for the Freedom Pump.

Here are the three main points I want to mention about the Freedom:

1. When I heard I could be trained to do the infusions myself, I was elated! I live all the way across the country from my extended family. And looking back on it, I am ever so grateful because it allowed me to get to spend precious time with my mother during the last two years of her life as she bravely fought Pancreatic Cancer. I wasn't restricted to a treatment schedule in Arizona; I could go to Atlanta and be with her when she needed me.

2. The pump I had when I was pregnant, as well as the chemo pump my mother had, may have been shorter than my Freedom Pump, but they were boxy and heavy, and they beeped all the time about something. I never got a good night's sleep with those pumps in the room. They were just a lot more upkeep.

3. My mother was also my RN and my best friend, and I was utterly devastated by her passing. I have always loved to travel, and now I use travel as therapy. I like to keep a trip on the horizon to look forward to so that I don't get depressed. I couldn't do that without my Freedom Pump. 

The pump is so slim and easy to slip into a backpack or a carry on. Because there's no metal or batteries, there's no problem when sending it through a security checkpoint...in any airport. It's simple and easy to inspect.

A year ago, my two teenage daughters and I decided to go on an epic adventure. My friends were already living in Portugal, so that was our main area of concentration. We also went to Iceland (twice), Italy, and France.

To make a long story short, I brought everything else for my infusion, but somehow managed to set aside my Freedom Pump when packing and leave it at home. The memories of how I felt before I started immunoglobulin therapy began flooding back. I tried not to panic, and I started making phone calls to hospitals and pharmacies.

I was able to locate a pump, for which I was very grateful. The pump in Portugal was quite the dinosaur compared to my Freedom Pump though! I'm guessing it was about fifty years old and it weighed a little more than your average American house brick. We turned it on and it worked like the dinosaur it was, slow and sluggish, and stopped when there was one gram left in the syringe. But it got the job done, and I was able to carry on with the trip. I haven't forgotten my Freedom Pump since though, and won't again. It'll be with me at the Grand Canyon this summer! 

Thanks for reading this tale of caution and woe, Beware! Take your Freedom with you where'er you go!

Based on an interview with Cody Cowart; a CVID Patient using the RMS Freedom Infusion System.

Situated in Rocky Mountain National Park is Moraine Park, a unique valley formed by an ancient glacial lake that offers panoramic views of the surrounding mountain range and its snow-capped mountains. The air here is a crisp 38 degrees Fahrenheit and the silence of the meadow is broken only by the sound of Elk in the distance.

Venturing deeper inside Moraine Park is the campground where Cody, a 27 year old CVID patient, sits in front of a campfire infusing his medication, a cup of hot coffee in his hand, and his eyes fixed on the natural wonder before him. About halfway through his infusion, it starts to snow.

Cody was diagnosed with Common Variable Immune Deficiency (CVID) in August 2016. When asked whether his diagnosis had any effect on the way he approaches challenges, he said, “Absolutely not.” Although being diagnosed with CVID was a “gut punch” and took some adapting, Cody says, “CVID is just something I have to deal with once a week, and I keep moving forward.” Using RMS’ Freedom Infusion products, he infuses once a week, encounters zero site reactions, and “goes about [his] day as normal.”

Cody advises patients, “to not think of it as something you have to do. Think of it as something you get to do. I’m thankful I have the ability to infuse. It’s given me a much better quality of life.”

Cody started with SCIg infusions, using the RMS Freedom Infusion System, once he was diagnosed with CVID. “It’s super simple and user-friendly. The products are good quality and I haven’t had a single problem.”

RMS’ consistent patient-focused approach to primary immune disease maintains the highest quality of life standards. RMS supports and celebrates each and every patient, such as Cody, who epitomizes the courage and the vitality central to the slogan, “With Freedom, anything is possible.” 

Travel easy with FREEDOM60®!

Summer is right around the corner and many of us will be travelling or on-the-go.  Infusing away from home is easy with FREEDOM60® - it’s totally self-powered, so you can infuse whenever and wherever you need to be.

Here are some tips from RMS Medical Products, to help you prepare for your travels:

Make yourself a travel infusion check list.  You don't want to forget anything for your trip!  Be sure to have enough medication, Precision tubing and HIgH-Flo needle sets needed for your infusion(s), while you're away.  You will also want to include any contact information, such as your healthcare provider, if needed.  Don't forget any insurance cards or medical information you may need in case of an emergency.

Do your homework.  Be sure to check the healthcare facilities where you are travelling.  It is also a good idea to let your healthcare provider know that you are traveling, and where you are going.  Discuss your itinerary and any risks that may be involved with your travels.

You should be able to get through a Transportation Security Administration (TSA) checkpoint without a problem when flying with your FREEDOM60®, Precision tubing, HIgH-Flo needle sets, and other supplies, once they are screened.  It is recommended to get a written letter of necessity from your healthcare provider to bring with you on the plane.  The TSA also offers a Notification Card that can be used by travelers with disabilities or medical conditions.  Note that this does not replace the letter of necessity.  To learn more, see the links below:

TSA Notification Card

Air Travel with Medical Devices

Air Travel with Medications

Air Travel with Medically Necessary Liquid

TSA hotline: 1-855-787-2227 

(Travelers may call TSA Cares toll free, 72 hours ahead prior to traveling, with questions about screening policies, procedures and what to expect at the security checkpoint.)

If you have any questions about your FREEDOM60® pump, Precision tubing or HIgH-Flo needles, refer to your Patient Information Guide.  The Troubleshooting and Q&A sections may be most helpful.  It is wise to bring a hard copy, but if you do not have one, it is now electronic and interactive and can be accessed on any device - no matter where you are (signal permitting). Click here to view!

To request a hard copy of the Patient Information Guide, you can call us toll free at 1-800-624-9600 or email us at [email protected]

Avoid exposing your FREEDOM60® pump, Precision tubing, HIgH-Flo needle sets, and medications to high temperature environments, such as leaving them in a car or out in the sun.  It is recommended to store the pump in a cool, dry place.  Packaged tubing and needle sets are recommended to be kept at room temperature (approximately 16-30°C or 61-86°F).

It is also a good idea to avoid water and sand, as you don't want to damage your pump.  With that said, the beach is probably not the best place for your infusion.

Note: Refer to your medications’ instructions for storage information.

On the go?  The FREEDOM60® travel pouch allows you to discreetly infuse during many activities.  It also has a convenient window to check the process of your infusion.

Infusing on the go is not for everyone - you may rather just do it in the comfort of your hotel room.  That's the beauty of the FREEDOM60® - you can infuse wherever you want.

If you are afraid your usual infusion schedule might be disrupted by your travels, talk to your doctor about moving your infusion time/day.  You can also ask your doctor about biweekly dosing options, which are now available.