Monday, December 24, 2012

IV Saline for POTS, Take One!

As you know, I talked to my doctor about IV Saline treatment for Postural Orthostatic Tachycardia Syndrome (POTS) recently. He thought that it was definitely worth a shot; after he got the insurance to approve it (at 100%!), I had my first session.


Home Reach, a home health care company, sent a nurse out to my house and we did the first infusion Friday night. It was all so lovely, I felt like a queen. That afternoon, a pharmacy dropped off all of the supplies to my doorstep, and then the nurse used the supplies (saline, gauze, IV pole, gloves, tape, etc.) to give me a liter of IV Saline. It took about one-and-a-half hours to run the bag through, and we filled out paperwork together while the drip was going. The whole process was so smooth and so easy, and I didn't even have to get off of my heating pad.


We are going to do a one month trial and see if the saline makes a difference in the way I feel, overall, and if it helps my POTS symptoms and/or chronic fatigue. The nurse will come out twice a week, and each session we will run one liter. During the interim, I will have the line left in place - for a month straight I will have a tube sticking out of my arm. Right now, it isn't very comfortable, so I can definitely see why having a port (portacath) would be much better. The IV is getting snagged on things and getting knocked around, which doesn't feel great. Having access in my chest, for the long-term, would be ideal. So, if this works, I will have a port put in.


It has been two days since my infusion. I can say that it made me feel good that night and maybe half of the next day. I am back to feeling sluggish today, and quite a bit POTSy today, too. So, what it seems like, from at least the first session, is that it is has pleasant but short-term effects. This is fine, as it is what I expected. Optimally, I can see having a port and running a bag of saline every day or every other day, depending on what the doctor recommends/allows.


For those who don't know, a port is a small device that is placed below the skin that provides direct access to a vein, so you don't have to dig around for a vein every time you need an IV. They are usually placed in the chest and go into a vein close to the heart. If you have a port, typically, a home care nurse comes out once a week to change the bandages and access, or de-access the port. If your port remains accessed, they can teach you to run your own fluids during the week. Sounds fantastic!

I will keep you posted on how the next sessions go and if it seems to be helping or not. The only negative I have so far is the accessed line in my arm is annoying and a little painful.

Hope you all have happy holidays and enjoy the time to reflect on the positive things that have happened over the past year. For me, getting engaged was the biggest and best.

Much love and light!
xo
dani


4 comments:

Anonymous said...

Wow! I have 2 kids I have to take to the hospital for 3 hours three times a week for IV saline. We deliver over two hours but may have to go to 4 hours. We are looking into placing a port for the oldest when they figure out who and if that surgeon is qualified to put in a feeding tube and handle Ehlers Danlos too. We have pay 10 percent of 1750.00 dollars for each one. Crazy!

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Unknown said...

Hi. I am a fellow EDS suffer with Orthostatic hypotension, vascular issues, prinzmetal's angina, Raynaulds and autonomic dysfunction. I was curious to know if you are still using saline therapy? I am just at the beginning of the journey over in the UK so would be nice to know how you are getting on 4 years down the road. Hope you are doing well. I also have a blog if you are interested www.fromtheheart999.co.uk
Take care xxx

Unknown said...

Hi. I am a fellow EDS suffer with Orthostatic hypotension, vascular issues, prinzmetal's angina, Raynaulds and autonomic dysfunction. I was curious to know if you are still using saline therapy? I am just at the beginning of the journey over in the UK so would be nice to know how you are getting on 4 years down the road. Hope you are doing well. I also have a blog if you are interested www.fromtheheart999.co.uk
Take care xxx