Hi, friends. If you didn’t know – I have a chronic illness called Pulmonary Arterial Hypertension (PAH). Essentially it causes the arteries and vessels in my lungs to harden and become really narrow, and that causes a whole host of problems for my body to try and correct. There is no cure. There are several treatments available–I take multiple oral medications plus something called Veletri – a medicine that is administered through my body via pump and permanent IV line in my chest. You can read more about this disease and its effects here.
I order my PAH medicines monthly through CVS/Caremark, though some others use Accredo or Briova (there’s probably more specialty pharmacies but these are the ones I know).
I wanted to share about my Veletri and supplies because I feel like there are going to be things that are standard in my order and things that are specific to my needs. If you are on Veletri already, I’m hoping that you will find some solidarity in this post, and maybe a supply you didn’t think about before that might help. If you or someone you love is about to start the Veletri therapy, I hope this post helps you know a little bit about what to expect. Starting a new therapy can be scary and cause a lot of anxiety (speaking from experience, here, especially with the subcutaneous or IV meds). Sometimes knowing what to expect can be empowering and help cut down on the fear and anxiety.
The boxes in the picture above are the typical amount I get each month for the Veletri. It has the medication itself and the supplies I need to mix it and attach it to my pump/IV line. This is unrelated but I usually get an oral medication with the order too, because the timing just works out that way.
Note: If a box is turned backwards or something is crossed out, it is for privacy reasons – CVS puts my name and doctor on literally every package and every box.
A few terms to know before we get started:
IV Line: I have a Hickman IV catheter placed in my chest on the right side that when used with my CADD Legacy 1 Pump, continuously injects the Veletri into my body – even while I shower and sleep.
Dressing: The covering that goes over the IV catheter where it comes out of my body is called the dressing. It’s like a giant, clear bandaid.
Mix: When I say mix, I mean the Veletri itself comes to me in a powder form. I have to mix with other things to make it injectable based on the medicine concentration and pump rate given to me by my doctor.
In this box we have:
7×7 Aquaguards: I use these to cover my dressing/IV line when I shower. I get waterproof tape from Target to seal the edges. Because of the placement of my IV line, like where it is on my body, the Aquaguard can be uncomfortable. The tape and Aquaguard work pretty well – I’ve only had water leak one time onto my dressing but it wasn’t a huge amount and we were due to change the dressing right after I showered that afternoon.
Cadd Extension Line: This is an extension of line that goes from my pump to my IV, so I can move around. I change this about 3x a week (Monday, Wednesday, Friday) depending on needs.
Injector Caps: This is a little cap that connects from my actual IV line to my extension set. I change this about 1x a week.
Bio Patches: These are the little blue circles in the picture. They are exactly what they say – little patches. They are soft little guys that go directly over where your IV connects with your skin before you put the dressing on. They work as a filter/barrier. If something were to happen and my dressing came up or was ripped, the Bio Patch helps keep germs out of my IV/body and helps keep my IV from becoming infected. My Veletri nurses used to say it was a “last defense” against infection and illness.
Skin-Prep: These are little wipes that make your skin sticky. I use about 4 of these wipes each week during my dressing change. It helps my dressing stay connected to my skin. This is going to sound ridiculous but I also use these to get sticky stuff off my skin and line. Sometimes, I have to tape my dressing down or there’s tape on my Hickman line, so I use the skin prep to get it really wet in that one area and it helps the glue come off.
AA Batteries: My Veletri pumps are Cadd Legacy pumps and they run off of two AA batteries. I change them each week and keep the old ones in a baggie to use around the house (like in my Xbox controller).
Spikes: These are the tools that go into the sterile water vials to mix with the Veletri powder. They are spiked on one end and have a syringe connection on the other.
Cartridges (in the boxes behind the supplies): These are the little plastic boxes that hold my injectable Veletri while its connected to the pump.
This box had a lot of mixing supplies. Descriptions will be from top to bottom and from left to right.
10ml Syringes: These big guys are what we use to get the Veletri out of the vials and into the cartridge. We use two of them every day.
Alcohol Swabs: I mean these are pretty straightforward 🙂 We use these when we are mixing and when I switch out my pumps every day and when we do dressing changes each week.
IV3000 Dressings: These are the actual dressings themselves – the bandaid-like film that goes over my catheter where it is connected on my body. I started using these as an alternative to what comes in the dressing pack, since IV3000 tend to irritate my skin less.
Coram Dressing Change Packs: These are individually packaged and sterile supplies we use each week to change out my IV dressing. They have things like sterile gloves, masks, alcohol swabs, chloraprep swabs (they’re like super duper alcohol swabs), tweezers, and other things you might need when you’re changing out someone’s dressing.
BD Q-Sytes: These work like spikes – they are pointed on one end and have a syringe connection on the other end. We use these on the Veletri vials.
Sometimes, CVS will forget to send or is out of stock of items that we need. So, I’ll either have to call them again to get the items sent to me or have my husband Jared go by our local medical supply store. We are very lucky that it is less than 5 minutes away from our house. 🙂
Usually we have to hit up the medical supply store for gloves – we use exam gloves for pump changes and dressing changes. Sterile gloves come in the dressing change pack but they are size Medium. I could use them but Jared is in charge of my dressing changes since I am ridiculously squeamish. I don’t like to look at where the Hickman catheter goes into my body. I feel like I’m getting more squeamish with age, anyone else? 🤢 Since Jared feels most comfortable in XL gloves we typically have to get them from a medical store. CVS/Caremark does not stock these consistently – there have been several times where they were out of stock for a month or more, and we’ve had to find our own.
And while this particular order didn’t send any, we also get chloraprep “mops” – I hate that word but that’s what the Veletri nurse called them. They are like round sponges with a tube you crack like a glow stick that is for sterilizing the skin under your dressing and around your catheter site. Google image search “Chloraprep sponge” and you’ll see what I’m talking about.
Here is the sterile water, sometimes called “diluent” (DILL-you-went) that we use each day to turn the Veletri powder into a liquid form. These are what the spikes go into. We use two of these little guys every day.
Lastly – here are all the boxes of the actual medicine, Veletri. We use three of these boxes each day. They don’t come refrigerated, though we do refrigerate the cartridge of mixed Veletri once we finish mixing it.
Like I said earlier – I hope this helps cut down on your Veletri therapy anxiety. I’m going to go into a little bit of a deeper dive into these supplies on Wednesday when I write about what I keep in my Veletri mix kits.
Do you use Veletri or know someone that does? Do they get the same items in their monthly order? Leave me a comment below!