Saline therapy for dysautonomia, one year in
Guess what I didn't write about here since I first launched my blog? Ah yes, the one treatment I've had for the past three years.
I've been getting IV saline (also called saline therapy so I'll use both) now since Spring 2015. You can read how the first couple of months went here; the first two weeks on saline therapy, weeks 3-5, and the first few months on IV saline.
We left this series on saline therapy when I'd had a weekly IV for about two months. If you want to read how that all went, make sure to read those posts I linked to. Basically, after a couple of weeks I had hardly any vein access left.
Vein access is how easy it is for a nurse/doctor to insert an IV needle in your veins. After having IVs through a vein for a period of time, they can start to become more difficult to access. Sometimes it even becomes impossible. That's what happened to my veins. It's not a dangerous thing, it's just very inconvenient.
How I did manage to get intravenous IVs
The last few times I had an IV through a vein in my arm (this is back in 2015), I would but a small hot water bottle or cherry pit cushion under my arm. The warmth would help to prevent the muscles in my arm to tighten around the IV, another problem I had. It caused the muscles to cramp up and close off the vein.
Without the hot water bottle, the IV would drip so slowly, it would take hours and hours for the IV to empty. It would hurt so much I would cry and scream my way through the bag, not willing to give up.
That would mean I wouldn't get enough fluids until next time my nurse could get an IV in.
The last time I had an intravenous (through a vein) IV, I made it through about half the 1litre bag (maybe not even that much) and a big bulge appeared next to the IV. Let me tell you, that hurt.
The IV catheter (it's not an actual needle that's in your arm, it's a tiny, thin plastic tube) had moved out of place. The vein got damaged and the saline started to run into my arm, extremely painful.
I pulled out the IV and put a band-aid on it. Once I got the needle out, the pain wasn't too bad but there was no way anyone could get a needle into my arm after that.
I didn't have an IV for maybe up to two months after that incident. It was so awful. My doctor was hopeful that my veins would recover and I could go back to having intravenous IVs. If only!
Getting a port catheter
My mom had brought up getting a port catheter with my doctor throughout that Spring/early Summer.
He wasn't keen and didn't think we would be able to get a surgeon to insert one. They're mostly used for people who need chemotherapy for a longer period of time. That, or for chemo that would be too painful or dangerous to administer intravenously. So there's an issue with whether a surgeon would do the surgery for something that wasn't a standard use.
A port catheter is a small device that is inserted under your skin. It's attached to a tube that's connected to a major artery close to your heart. That sounds scary but it's a great invention.
Rather than inserting a needle into your arm (and having to find a vein), the needle is inserted into the device. It still pierces your skin so it can be a bit sore or sting. It's a lot less painful than when you've had a nurse digging for a vein.
By early August, two months or so without an IV, I felt like I was losing my mind. It was so awful. It was worse now without an IV than before getting regular IVs.
I had gained almost 6 pounds of water weight, I was eating all the potato chips and anything salty I could get my hands on. I felt beyond miserable. I drank so much water and still felt dehydrated.
I went back to my doctor (well, he came to the house) and me and my mom pushed really hard for me to get a port catheter. It's scary but I knew that was going to be the only way I would be able to get my IVs again.
My doctor realized that too and pulled every string he had to find me a surgeon (awesome doc!).
He found me a surgeon who felt that there was every reason for me to have a port catheter. He arranged a date and all of a sudden, I had surgery booked two weeks later.
I was so desperate, my mom took it upon herself to call the surgeon, see if we could get an earlier date. The surgeon was awesome and said he had a spot open for me on his next day in surgery. That was barely a week from then!
I couldn't believe how quickly that went! It does go to show, sometimes it's worth pushing a bit to see if you can make things happen earlier.
It was scary to realize just how soon the surgery was going to happen. Even though I really needed the port.
Next time, I'll let you know how my surgery went and what IV saline's done for me since then.