Part of therapy for Pulmonary Hypertension consists of medications that dilate the blood vessels. While this process doesn’t cure PAH, it does help with alleviating some of the damage it causes. Think of a water hose that is about 1.5 inches in diameter. Now, apply 100 pounds of water pressure to that hose. Eventually, the narrow hose will cause the pressure to damage the plumbing that is connected to it. However, increase the diameter of that hose to 4 inches. This allows more water to run through it thereby alleviating the strain on other piping.
Keep in mind that there was no therapy for PAH until 1995. The first medicine that was released was called Flolan. It was a miracle, but not without its issues. First, it can only be administered via Hickman line, or central venous catheter, to the artery of the heart. A Hickman line is typically used for many cancer patients to avoid numerous I.V.s and punctures the skin. It’s administered 24 hours a day by a medium-sized CADD Legacy Infusion Pump that is worn by the patient. The drug, it was very unstable and has to be kept at a cold temperature with ice packs around the pump. The medication has to be mixed and added to the pump each day. The most important thing is that the medication only has a 5 minute half-life, or the time the medication remains active and in the patient’s system. So, if the pump stops, the patient has five minutes to get the pump restarted or severe, possibly fatal consequences may occur.
So…no…not a whole lot of fun.
Years, later, a drug called Remodulin would be developed that provided all the benefit of Flolan, but not as much hassle. It, too, is administered by infusion pump, but a smaller, pocket-sized CADD MS3 pump. It doesn’t have to be kept on ice, it can be administered by infusion site instead of direct Hickman line, and it has a 4 hour half-life, which give a great deal more time to the patient should an event occur. It was approved by the FDA in the early 2000s. This is the medication that I am on. The only bad thing about Remodulin is that it causes reaction at the infusion side, sometimes severe. Yep…that’s a pain. I’ve been doing this Remodulin thing for about a 2.5 years now, and during that time I’ve found some nifty tricks that have certainly made my life easier. I hope that in sharing them with you maybe I can help make your life easier as well.
When I first began treatment I was lost. I had no idea how I was going to manage my day-to-day. Getting up at 6 AM and getting ready for work was going to be challenge. I wasn’t going to have a great deal of prep time without getting up at 5 AM, and I’ll tell ya…I’m NOT a morning person…at all.
The goal was simple: find a regime that would keep my site and pump dry and sanitary while cutting time spent with bandages and tape.
When the nurse first came and trained me on the medication, she gave me a few pieces of advice and things to use, and I tried each one of them.
- Silhouette Infusion Kit: This infusion pump kit enters the skin at an angle and is meant to offer more comfort.
- Outcome? I didn’t find it any more comfortable than the standard Sof-set kit. Additionally, the cotton backing is comfortable, but presented the potential to retain moisture from showers and skin. Not ideal when you try to hold a site as long as you can.
- Pump Shower Bag: A bag with a hanger that you can put your pump in and seal.
- Outcome? The bag was cumbersome to use. I didn’t like the fact they weren’t that reusable-friendly.
- Aquaguard: A “water-proof” bandage lined with adhesive that is meant to keep your site dry.
- Outcome? This thing was useless. The adhesive wouldn’t hold in any manner. I only used it twice.
- IV3000 Dressing: A moisture responsive, transparent film dressing, specifically designed to meet the needs of catheter fixation.
- Outcome? I did like this. However, it wasn’t really waterproof. It would guard against a small amount of water, but not the amount of water I would encounter during a typical shower.
- Glad® Press & Seal Wrap: Well…you know what this is. The nurse suggested that I try this to see if it would work as some patients had a good experience with it.
- Outcome? It worked better for luncheon meat.
- Sleeping: I knew it was going to challenging sleeping with something strapped to you 24 hours a day. The advice given was to place the pump in a pajama pocket, or under the pillow.
- Outcome? Through the night, the pump easily slips out of a pocket or becomes wrapped around your arm while under a pillow. Not too comfortable.
These things didn’t work for me. By the time I would get enough tape wrapped around my site to manage, I had spent twenty minutes prepping for a shower. I thought there had to be a better way. So, I set out on a mission to find things, modify bandages, and tweak processes in order to find something that would work the best. And I am glad to say I think I found it.
Now, the following things work for me. I receive my medication subcutaneously, so I can afford a certain bit of whoops. Worst case, if I got a slight infection, I would just move my site. If you have an IV site, or Hickman line, please follow your doctor’s orders. I wouldn’t recommend getting an infection in your line. I’ve heard those are not fun at all.
So, without further ado, here are my pointers:
- Cleo 90 Infusion Kit: I love, love, love this thing! It is so freaky-easy to use. No message bandages, no tape, no injection gun. Nope, this thing comes all inclusive. The needle is contained in the main unit, so that means no sharps to throw away. Also, the site bonds pretty easy to the skin, so no need to bandage and bind it to the skin. It is 100% better than the old, bulky Silhouette and the Sof-set kits.
- Nexcare® Knee and Elbow Waterproof Bandages:This has been my greatest discovery! Nexcare has a great waterproof bandage that around 4×3 inches. Using a standard IV prep wipe, I can have the bandage last more than four days, sometimes six. It holds great in the shower and I don’t have to worry about it. I leave the bandage on to keep it dry and germ free.
- IV3000 4” Dressing: This actually is a GREAT skin tape. I found actual tape a little irritating to the skin after being worn for a few days. However, the IV3000 texture flexes with the skin very easily. I trim the edges from each end and use them to add extra protection for my site. I use one end, trimmed in half, to line the bottom of my Nexcare bandage right where the tubing exits. The other end, I cut in half and use to tape the tubing to my side.
- Adhesive Removal Wipes: As you may imagine, after having adhesive on your skin for a while, you may get a little dirty and sticky. So, using these adhesive removal wipes help clean and sanitize the skin.
- IV Prep Wipe: These are GREAT! If you have super baby-soft skin that is freaky young for your age (like me), then these will help secure bandaging to your skin and provide a longer life to your tape points.
- Zip-lock Bags with Zipper: I love it. Get the ones with the plastic zipper. That way you just toss the pump in the bag and zip it closed. Easy-peasy.
- Shower Cup/Shelf with Suction Cups: You have to get one of these. Run to your locate department store and pick one up. It suctions to the shower wall. Simply get it, toss the pump in the holder, and relax. Even though you have the zip lock bag, when placing your shelf, put it somewhat higher that your shower water to keep it from getting too wet.
- Exercise Arm Strap: Not only does it keep your pump secure, it prevents it from rolling all over the bed. Just like the straps you get for iPod or mp3 players. It makes sleeping much better.
All and all, these things may not be the magic bullet for you, but I know they have helped me maintain an easy regime. The goal is to make things easy, make them feel normal. Adding this sense of normalcy to your day helps reduce stress and elevate your mood tremendously.
Have you tried other things that work for you? What advice can you offer?
Prayers to you and yours…