I had been doing IV Saline for four months for Postural Tachycardia Syndrome (PoTS), and my nurse had been accessing me in my arms and hands with an IV needle. I was beginning to look like a heroin addict – track marks up and down my arms, bruising and scarring. It wasn’t a pretty sight. It was also getting really hard for the nurse to access my veins because they kept rolling; they were blowing because of being accessed so much so we started talking about me getting a PICC line or a port. I opted for a port. It was the best decision ever. I love it beyond words. I shouldn’t just say “it”…I should say her; I named my port Persephone. I have now been doing fluids for a year and a half and I am still happy with both the decision to do fluids and the decision to use a port.
Before I get into ports, I will explain my fluid situation. We were originally doing saline solution and it was nice, but we really amped it up when we switched to lactated ringer’s. Lactated ringer’s is a mix of sodium, chloride, lactate, potassium, and calcium; basically, it’s like Gatorade in an IV bag without all the added yuckiness of actual Gatorade. It’s an amazing mix of electrolytes. I do a litre of lactated ringer’s each day through my port, 7 days a week.
The other thing that really helped: a pump. I was using an IV pole and gravity was doing the work, and even though I had the convenience of a port, I was still stuck for hours to a pole and it was cumbersome and a pain. When I moved to Seattle, the nursing company let me get a pump, which is an automated way to push the fluids through, and it’s portable. Now, I can run fluids while sitting on the couch, or I can even run fluids while at the grocery store. It has made life so much better.
So…ports…let’s just dive right in.
A port, or portacath, is a small device placed under the skin with a catheter attached that leads into a vein that goes directly into the heart. One can access this device with a needle and either take blood out through it or place fluids or medicines in through the port. If you get a port, I recommend asking your doctor to thread it under the clavicle and also to stitch it in place with an extra stitch as they tend to move around a bit in EDS patients, even though some doctors swear that is impossible (I know it’s possible from a friend’s experience). My doctor stitched it down in one extra spot and mine only wiggles a little bit.
On the day of my outpatient surgery (it was an easy surgical procedure):
There is a great 2 minute video explaining ports and how they are placed and used:
With my port, we keep it accessed 7 days a week so I can get my hydration daily. We change the “access” (the needle and dressing) once a week. I was trained to do it myself, so I am able, but I currently have a nurse doing it because I am still recovering from hand surgery.
When you aren’t accessed, you see nothing more than a small bump under the skin. But, in order to receive fluids, you have to be accessed. That means you look more like this, with the dressing on:
|No idea where this pic came from, but I love it!|
Just one more tip for those of you with ports and portable pumps…turning the key to attach/detach the tubing can be rather difficult. A nickel fits in a lot of models really nicely, but can be hard on the hands. My wife came up with the idea of gluing some rubber cabinet liner to both sides of the nickel to create a grip on it and make it easier. So much better! Hope that helps you, too!