#rmsmedpro

[akabrat]

Infusion day... igg levles are finally coming up & in a normal range. However, my CBC still has lows in it. One day at a time #rmsmedpro with vial one of #gammagard I can’t wait to do these at home #cvscoram hopefully can get this all worked out soon. #scig #primaryimmunodeficiency #cvid #hypogamaglobanemia #funtimes https://www.instagram.com/p/BzRRpQnADma/?igshid=1m5tspalh81wp

[korumedical]

I Couldn’t Do it Without My Freedom Pump!

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!

-Jessica in Phoenix

[korumedical]

With Freedom, Anything is Possible

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.” 

CLICK HERE for full interview.

[korumedical]

“CVID Hasn’t Stopped Me from Doing Anything”

An Interview with Cody Cowart, a CVID Patient Using the RMS Freedom Infusion System.

1. Can you give us a short bio? Hi, my name is Cody Cowart and I am 27 years old. I live in Central Florida. I’ve been married for almost 2 years and my wife has been a huge support through the whole process of being diagnosed with CVID. I love the outdoors and traveling. I am currently going to school to become a firefighter/emt and my goal is to get hired on with a department in 2019.

2. When were you diagnosed with CVID? Were you sick for a while before diagnosis? What was the process like? I was diagnosed with CVID in August of 2016. For about a year leading up to diagnosis, I felt sick all the time. I was always extremely tired, and my knees and other joints would hurt for no reason. My workouts weren’t like they used to be and I would be extremely sore for longer than normal. I had no idea why or what was going on. It wasn’t until I was diagnosed that it all made sense. That explained why I was feeling sick, tired, grumpy, and just not 100% myself for so long.

3. Did you start with IV infusions? If so, what made you switch to subcutaneous immunoglobulin (SCIg)? Would you recommend SCIg to newly diagnosed patients over IVIg? I did not start with IV. I have been infusing via (SCIg) from the beginning. I obviously don’t know how I would like IVIg, but I can tell you that after you get a good routine in place, SCIg goes very smoothly. I would recommend SCIg to new patients because it is a very simple process and easily administered to yourself.

4. What was your experience like with your infusion nurse? My infusion nurse was great!! She was very knowledgeable and lived close by. She made the whole experience a lot easier. In the four visits I had with her, she taught me everything I needed to know, and I have been fine since then.

5. Have you always used RMS Freedom Infusion products or have you tried other brands? I’ve always used RMS Freedom Infusion products and I’ve been happy with them.

6. Have you experienced any adverse events from infusions? (i.e. site irritation, drug leakage, itching?) I have not experienced any adverse events. Each week I infuse early in the morning, then I go about my day like normal.

7. What is your experience with the Freedom Infusion System? Do you find it easy to use? I like the Freedom Infusion System. It’s super simple and use friendly. The products are good quality and I haven’t had a single problem.

8. How often do you infuse? I infuse once a week. Usually early Saturday or Sunday morning.

9. Do you travel? Where are some unique places you’ve infused? I definitely travel as far and as often as possible.  One of the coolest places I’ve infused would have to be Moraine Park inside the Rocky Mountain National Park located in Estes Park, Colorado. It was early, about 38 degrees outside and I was sitting in a camp chair next to the fire. I had amazing views of the Rocky Mountains and could hear the elk in the valley next to camp. About half way through my infusion, it started to snow. It didn’t bother me because I had hot coffee, and my wife & I planned to go hiking when I was finished. The following week, we were in Glacier National Park, and I did my infusions while sitting in our jeep watching the sun come up.

10. Do you have any tips for patients traveling with their Freedom system? One tip I would suggest for patients traveling with their Freedom system is to make sure they keep their meds in a hard container so the glass doesn’t break and just keep it in your cooler. To warm mine up before infusing, I would get up an hour early, take the meds out of the cooler, and put them back in my sleeping bag with me. In my opinion, there’s no reason why you couldn’t travel anywhere and infuse along the way. I know I will be infusing on many more trips.

11. How has being diagnosed with CVID changed your perspective on life? Being diagnosed with CVID was definitely a gut punch and a hard pill to swallow. After learning about it and starting treatment, it got a lot easier to deal with. Honestly, I’m glad CVID is all I have. I know it could be much worse. I still go about life just the same as I did before and that’s a blessing. CVID really showed me how fast life can change. I don’t take anything for granted anymore.

12. Do you think living with CVID has changed the way you approach or deal with challenges? Absolutely not. To me, CVID is just something I have to deal with once a week, and I keep moving forward. I’m currently going to EMT school and will go right into Fire school after this. CVID can’t slow me down.

13. What advice would you give fellow PI patients? My advice would be 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. Also, get into a routine. Something you do every time you infuse. That way it just becomes habit.

14. What is your take on “With Freedom, Anything is Possible” I agree 100%. CVID hasn’t stopped me from doing anything since I started my infusions with the Freedom Infusion system. I travel, hike, mountain bike, camp, and still do everything I want to do.