Monday, July 21, 2014

IV Fluids for PoTS: Port Portacath Installed for Easy Access

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:


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.
xo
dani

6 comments:

Nakki said...

Yay so happy you're diggin' the port and most importantly, feeling way better :)

I wouldn't trade mine in either, and agree it was one of the best decisions I've ever made.

Thanks for the heads up about the Lactated ringer, I'm totally going to be pushing to give it a shot.

Sending much love n' juju, keep swimmin' <3

Stacy said...

Hi Dani - I've followed your journey for a long time. I'm so happy you took this step and it's helping you so much!

I have very little doctor spey for my conditions. Once I was Dxd and put on some meds I was sent on my way. I've taken quite a turn the last several months. All that used to work doesn't. How did you get to the point that you knew any sort of IV fluid was for you? (My last round of IV fluid thru a PICC was discontinued 2 yrs ago once I was out of danger")

Lisa Simmons said...

This post came at a great time for me. I don't use my PICC for fluids (I did try to get a dr to order some but with my changing allergic issues being anaphalytic and those issues bringing down my quality of life more then my POTS currently I decided to save that battle for later). But if I'm ever hospitalized I do feel better on IV fluids (they just didn't transition me to home ones sadly and I can only fight so many fronts and doctors at a time).

But I'm very interested in your talk of adhesives because it seems what I used this week is officially causing a big problem (my moms a wound care nurse of over 20yrs and I've had my PICC almost a year and she's done all my changes, so it's defiantly not caused by human error). We pulled our latest Tegaderm off and a line of my skin came with it.......OUCH! I've never tried any skin prep (I know it can't be alcohol for me) but maybe a change in the type of Tegaderm would be an option before we attempt trailing skin preps.

My skin has been so good to me considering it's EDS skin, but I'm an official long time steroid user (on a year long slow wean to then check my adrenals and see if I have to go back on or not) and my arm where my PICC is has massive skin tears and lots of stretched and saggy skin (at my ripe age of 21 lol, thank you EDS and mast cell disease) so it's thinner there (and this is my good arm for where PICCs are placed -face palm-).

Anyhow I'm so glad the lactaid ringers helps you. I love that stuff as well (that or D5W). Never knew exactly what was in lactaid ringers till now so cool info.
Lisa Simmons

Vegan Danielle Davis said...

Hey @Stacy - I just knew that I wasn't feeling well. Friends had ports and they were getting fluids and it was helping them. I wanted to see results for myself so that was all it was...there wasn't an "aha!" moment for me...more just that I wanted to feel better and I am up for trying all of my options. And then reporting to you all so it can help you if it works. ;)

Anonymous said...

I had to fight a whole IR department over the move from a PICC to my Bard PowerPort. Finally my primary sent me across town. Yup it's awesome and I'm at my 1st anniversary. My only thought is on Lactated Ringers-- if you're sensitive to non-protein parts of corn (so many of us with mast cell disorders are allergic to grains already) should be aware that lactated ringers has corn derivatives-- *sigh*

Operation: Road to Recovery said...

Great post! I'm currently going through the rounds of trying to find an acceptable dressing for my port. So many itches!!