I have been doing Saline for POTS for about a month now. The improvements have been astonishing to everyone. While getting treatment twice a week I was not falling, improved heart rate improved blood pressure, and less pain (most times) with passing stones. Being able to shower and not get dizzy is something that is hard to put into words. Simply amazing.
We are attempting to taper the steroids a little. However, it is quickly becoming apparent that my body is not okay with this move. The pain and fatigue are expected. In addition, my blood pressure is regularly crashing. My POTS doctor put an immediate pause on the tapper to avoid me being admitted to the hospital. We are now preparing to have a PICC line placed so that I can do fluids at home. I have gotten to the point with my POTS that I can become critically dangerous at any point. It’s not just a little low blood pressure but extremely dangerous low blood pressure (that refuses to respond to salt).
With my final week of school, I was only able to get to chronic care once this week. It was a good learning experience for everyone involved showing how well I respond to Saline. The combination of tapering and less Saline has been difficult.
The goal is to do this short term a few months, but it is a see how it goes type of a deal. We have opted for the PICC line mainly because of time frames (a Midline wouldn’t stay in as long and the doctor thinks the Port is too drastic). Additionally, it is easier for me to do things on my own in comparison to a Port.
“A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your child’s arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood from the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.” (chop.edu)
PICC lines can be used in many different illnesses such as Lymes, EDS, POTS, CF, and IBD just to name a few. Others with chronic illness may use it to give antibiotics or to get TPN.
Many people find medical procedures intimidating. Here are my preparing for a PICC tips!
Educate Yourself: Your doctor will give you information but take the extra step. I would suggest reading three to ten articles from reliable sources. Read about how it is inserted and how to care for the line. Youtube also has some solid information.
How is the PICC inserted?
- A specially trained nurse or doctor will use an ultrasound machine to find the veins in your upper arm.
- Your arm will be cleaned and covered with a sterile cloth to prevent infection.
- Medicine is used to numb the area where the PICC will be placed. The PICC will be inserted into a vein just above the bend of your elbow and guided into a large vein in your chest. Most patients feel little or no discomfort during this procedure.
- Once the PICC is in place, it is held to your arm with special tape and covered with a sterile dressing.
- A chest x-ray is taken afterwards to make sure the PICC is in the right place.
- You will be able to bend your arm and use your arm just as you would without the PICC in place. my.clevelandclinic.org/
Connect With Someone: Find someone with a PICC line to connect with. If you are unsure where to start check out a Facebook support group. In addition, talk with a family member about it and at least one friend. Those you love can offer a unique perspective.
Supplies: There are some things that are included like the saline flush, your meds, and the tubing. I decided to invest in a PICC line cover to wear during the day. There are so many cute options these days! I got my cover from Sleek Sleeves on Amazon. I also invested in a shower cover which I am hoping works like a charm.
Additional Tid-Bit Tips:
get the PICC Line wet.
Know the signs of an infection/ know when to call the doctor
Find out if you have any restrictions with it
Know how to use it (A home nurse should stop by to give you a crash course)
Have a plan to infuse on the go if needed so that your not stuck at home if you feel well enough to go out
If you have a PICC line comment your tips!