Recently, Alice reached out to share some tips she had learned while preparing to travel with her PICC line. We thought this was super helpful for our community and she agreed to share it with our broader community. Please see below for her post and thank you Alice for sharing your tips!
Later this month, my husband and I will be traveling from our home in Hawaii to Stanford for a consultation and medical procedure. I have Ehlers-Danlos Syndrome, which causes dysautonomia, and the big-wig docs at Stanford think I have a cerebral spinal fluid leak due to weak connective tissue in my dura, which is the covering that surrounds the spine. The dysautonomia causes chronic dehydration, low blood volume, tachychardia, fainting, and a host of other issues. I've had a PICC line off and on for the last few years, and I run a liter or two of saline a day to increase my blood volume and relieve symptoms. I was using a regular IV pump and pole, but technology keeps getting better, and a few days ago I was switched over to a portable, much smaller and lighter pump, the CADD SOLIS VIP (pictured below).
Today is my first day experimenting with the set-up, which is different from the regular, old-school pump. The tubing is different, and includes a cartridge with a filter that hooks into the pump. The bag has to be pre-primed, which means you have to squeeze all the air out of the saline bag before you hook up. My home-care nurse came over to my house a few days ago to train me on how to use it, and it seems to be pretty intuitive after the first time, especially if you're already used to running fluids the old-fashioned way. The pump comes with a backpack (pictured below) that has special, labeled pockets inside to hold tubing, supplies, and the pump. It has room for two liters of fluids. The whole thing weighs around five pounds when it has a liter in it, and it has adjustable straps, so it's pretty comfortable to walk around with. It's very quiet- I'm running a liter right now and I can't hear the motor over the music I'm playing. It's also discrete- besides the tubing that runs out of a side pocket, you can't tell by looking at it that there's a medical device inside. The pump runs on AA batteries that Pharmacare (my home nursing and supply company) provides. If it's run continually, the batteries need to be replaced daily. I'll only be running it a few hours a day, so hopefully the batteries will hold out a bit longer.
We are going to be staying with a family friend while we're in California, and it's nice to know that I don't have to have a portable IV pole shipped, and that I don't have to spend four hours at a time hooked up to a gravity line. It's also awesome that I don't have to turn my friend's home into a hospital room. The portability and discreteness of the setup means that I can go to the movies, or shopping, or for long drives - basically live my life - without having to plan long chunks of time at home (or at our friend's house) in bed. It also means that I can parent easier. I have an eight-year-old, and for the last few years my daughter has had to either ask her dad for help when I'm hooked up, or wait until I can unhook from the pole for me to be able to help her with anything. Now I can drop her off at playdates, play outside with her, and move easily from room to room in the house. I can prepare meals. I have a bit over a week between my doctor's appointment and my procedure, so my husband and I are planning to do some small road-trips during the day. In the past we've had to split our day in half so that I could go back to our hotel room to hydrate. Having a portable pump means that now we can stay out the entire day. A portable pump restores a bit of normalcy to my life, and that's a wonderful thing.
Alice, thank you for sharing your story with us!
If anyone else has any topics that you would like to read about or share with our community please don’t hesitate to let us know! At Care+Wear, we are dedicated to creating products to help you get back to living your life.
March 17, 2020
HI, I was just wondering if anyone has experienced leaking air bubble filters, the little round disc that is near the valves towards the top of the tubing going into your arm. I have had a picc-line for 3 weeks now and have had three leaking filters. The home nurse’s don’t seem too concerned. They just change it out. I know it would take a lot of air bubbles to pose a problem to my health but I am quite anxious about this whole thing and think there needs to be better checks and balances. Any information would be helpful.