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):
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:
There are a few downsides to having a port, and one of them is the allergies to adhesives. If you are like me, you are allergic to most adhesives. We have tried many, many different types of dressing covers and I've found this specific one to be the best, the Tegaderm I.V. Advanced. The other Tegaderm ones don't work for me, just this one does. It gives me the least irritation. Also, I have to use it with a "skin prep" - like an alcohol pad, but when you wipe the liquid on the skin it dries and provides a barrier between you and the adhesive. I highly recommend talking to your nurse about it, if and when you have a port.
The other downside to having a port is not being able to shower while accessed. Some people I know only run fluids a few days a week, but for me, I am accessed 7 days a week, so I am stuck doing sponge baths, as my grandma calls them. It is a commitment, for sure, but for me it is very worth it. I wouldn't trade Persephone for the world. Yay for ports and fluids for PoTS! :) For me, the combo of Florinef (fludrocortisone) and lactated ringer's keeps my PoTS under control the best. I've tried all sorts of treatment options, but this is by far my favorite. I need the Florinef, but a while back we stopped the beta blocker (propranolol) and the Midodrine. I just use Florinef and fluids now, and I am happy as can be.
I saved the "best" for last...for those of you not afraid of blood and guts, here is a video of an actual port placement surgery, scalpels, needles, and all. It's pretty cool if you are into that sort of thing, like I am:
For those of you with a caffeine addiction, like me, you could just skip the saline or lactated ringer's, and just do straight-up coffee... ;)
|No idea where this pic came from, but I love it!|
What to do if you want to ask you doctor about fluids: see this post on talking to your doctor. Print out the info/documents I provided and bring it with you to show your doctor. Best wishes!
What to do if you are interested in a port, provided you've already talked to your doctor about fluids, or are already using fluids: show them proof. Print out my post and show them --- the proof lies in seeing it work with other people. If you have other friends that have ports, I also recommend getting them to write a short statement to bring to your doctor with you. I did, I brought 4 friends' statements along with a photo of each of them, with their port showing, to the doctor to show her what ports can do for us (provide easier access, long-term access, provide a way for you to move around while doing fluids, etc.), and that is what convinced her. Good luck!
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!
May the summer heat not keep you beat.
Love and gentle hugs.