Saline Infusion Question

[JeWareGT]

I had a cardio appointment this week, and suggested a standing order for saline infusions. To my surprise, although he hadn't ever heard of anyone doing that, he thought it was a great idea and wrote the prescription. Yesterday, I went to the hospital to try to set it up, and found out that they wanted to charge me $300 towards my deductible each time. For one liter of saline! Does this sound normal? I wasn't prepared to spend that much money yesterday, so I left without getting the infusion.

I live in Atlanta, and there is a company here that does saline infusions for athletes and people with hangovers mostly. It's $99, which is much better than $300, but it looks like the saline goes in in less than an hour, which I know will not give me as much of a benefit as the 2 hours I was prescribed. Still, I'm thinking of trying it this afternoon. Has anyone heard of it? http://www.hydrationstationatl.com/

[Dustbunni]

Hello!

I have dysautonomia/POTS with a probable mitochondrial disorder. I now have a chest port (PowerPort) and give myself 1 liter daily IV saline infusions. (Note: I also take Florinef as well, but it only helps stabilize my blood pressure, not much else.) The infusion is super easy and PORTABLE! I don't have to be hooked up to IV poles for 4 hours a day. My infusion supply company uses Homepump Eclipse* Ambulatory Infusion Systems. Basically, they're specially pressurized IV bags that don't require gravity or pumps. Think a balloon in a plastic bag (or Google them . They're amazing. I hook it up (also super fast and easy) with the tubing under my shirt and slip a 500mL saline bag in a fanny pack (I use 2 a day). With a pair of gloves, some alcohol pads, and my flushing supplies in the front pouch, I'm mobile! I may not be especially fashionable, but I'm free to go anywhere during the infusion. Anyway, once a week my supply company ships out my saline, dressing change, etc. However, you can also buy most of the supplies on your own; though you may need your doctor to write a prescription for some of them.

My husband and I even requested we be taught how to change the huber needles ourselves. The nurse who put the first needle in at the hospital walked us through it. Then we did our own research to be sure all her advice was sound (you can't be too careful). Since then my husband usually changes the needle, but I have even done it myself once (not as easy as someone else doing it, but possible). For those not interested in doing it themselves: When I had the PICC line in to trial the IV saline a home health nurse was ordered to visit once per week to change the needle and dressing. This may also be an option for some people if visiting infusion centers or hospitals once a week is too difficult.

For reference to others considering IV saline: Before I started IV saline I was essentially bed-/recliner-bound; only able to ambulate with a walker (and sometimes pushed in a wheelchair) in my home for a couple minutes most at a time. I could barely speak without losing my voice and having difficulty breathing. I was absolutely miserable with my autonomic system completely and totally "whickity whacked". For example, a 2-degree temperature change would literally trick my body into hypothermic states. My heart rate would jump 80 beats per minute just from standing, without taking a step. Within a week of starting the IV saline I could walk around my home with little assistance; open my front door without my body temperature spiraling out of control; talk to my heart's content; think clearer; see clearer; not feel like I was in the midst of a severe flu most days; and so many other things that hadn't seemed possible for years. It is a miracle. I can still overdo it, but I bounce back in a small fraction of the time. I'm not "normal" but now I have hope that it is possible to get closer to that elusive goal. And I'm just flat out enjoying every single improvement I get and grateful for each.

Recently, I skipped a day of IV saline and it was horrible. Within 36 hours I was declining rapidly. By 48 hours I was quite miserable again and essentially nonfunctional. After the liter of saline I bounced back in a couple hours to a point I cannot reach with any amount of Florinef, oral fluids, and salt.

Most of the doctors and nurses I encounter know little to nothing about dysautonomia. Interestingly, most of the nurses are excited to learn more about it. However, in my experience, if a doctor is not familiar with it, they usually don't appreciate being "educated" on it.

I'm sorry your hospital is so expensive. So is my local hospital and I avoid it like the plague. Is it possible to change the hospital orders to better work with your insurance? For example, at my hospital their charges change depending on what "department" the orders are written for (Ex: infusion department, outpatient procedure, ER, etc.). Perhaps your doctor could contact the hospital and see if there is a work-around?

Good luck! It shouldn't be so hard to get salt water, but it usually is!

[Lethargic Smiles]

I have an "as needed" standing order and have had it with 2 different insurances. Both have always paid almost all of it, but when I see the statement, I'm pretty sure each infusion (includes basic metabolic panel blood test to check electrolyte levels) was billed 500-800 dollars. I think once (prior to getting secondary insurance) I had to pay something less than $50.00. My first prescription said "for severe dehydration due to POTS" the other said "for POTS attacks", but I know they code it as orthostatic hypotension because POTS is not something they have in their system. I'm not sure if it being a standing order I call in when I need rather than a weekly appointment makes a difference. It shouldn't since technically, I could go 2 times in 1 day with the order I have written, but insurance companies can be strange creatures! Would it be cost effective it to get a insurance policy with a little more coverage?

[JeWareGT]

I think it is more of the way my doctor wrote the prescription (or the way the hospital interpreted it) rather than my insurance... I actually have really great insurance, which is why I was so shocked!

Anyway, I went to Hydration Station, and it is amazing! The first time, they couldn't find a vein, and after an hour, we decided it was time to give up. But I've been back twice since, and it's great! Very cost effective, and the place itself is really cool. You can choose either a private room or basically a big living room with tvs, and they have heated/massaging recliners for you to sit in and they give you blankets if you are cold from the IV. For anyone in the Altanta area, I highly recommend it! It was also really cool, because every nurse I've had has been very interested in Dysautonomia even though they don't know anything about it, and one even told me that next time I come in, she will have read up on it and will be an expert! Haha. I personally have never had doctors or nurses be that interested, so this is a first for me!

[Dustbunni]

Congratulations GTgrad on getting the IV saline! I'm so glad it was mostly a pleasant experience (IV sticks are never nice).

Are you noticing many improvements afterward?

I'm fighting a cold right now, but for the first time in years I'm not completely down for the count because of it. In fact, even with the cold I've managed to do holiday shopping, a party, gift wrapping, and loads of other activities. Pre-saline even a short shopping trip would have left me sick for a week or more. There is no way I could have done all these things back-to-back over a couple days - even without the cold. I love IV saline. Love, love, love it! (Uh oh. I'm starting to sound like some obsessed fan. )

[JeWareGT]

Yes, I love it!! And the effects seem to last 3-4 days... I'm going to start sounding like an obsessed fan soon, I think! I have an appointment for tomorrow afternoon, so hopefully that will get me through last minute holiday shopping, etc.

This place also gives you oxygen during the infusion (if you want), and I think that may be helping as well!

It's especially great because it is only 3 miles from work, and is on my way home, so it's not even a big inconvenience to go.

[Dustbunni]

Yay! We shall conquer our symptoms (and to-do lists) one IV saline bag at a time!

[MomtoGiuliana]

That is great that you found a place that will provide you IV saline. Never heard of saline prescribed or used for hangovers or athletes.

Regarding oxygen, you may want to consider this:

http://www.ems1.com/...an-oxygen-hurt/

[JeWareGT]

Wow, thanks for the info on oxygen! Very interesting...

[Lethargic Smiles]

Sounds like a great place!! I'm happy you're seeing so much benefit.

[JeWareGT]

Does anyone know how often it's safe to get b12? I've gotten it in my IV every time so far... Just want to make sure Im not missing anything like with the oxygen.

[MomtoGiuliana]

I have heard of some POTS patients feeling a lot better after B12 injections. I am not aware of any adverse health risks, but you may want to talk to your doctor about it.

[Dustbunni]

When I had to have B12 shots a few years ago I was told the excess would be excreted in urine and that there was no fear of overdose. I never had any negative side effects and for a while had the shots on a weekly basis.

[castronovo112587]

Definitely want to bring up saline treatments at my next appointment. Don't know why doctors have such an issue with it. It seems they have no problem prescribing meds like candy but have an issue prescribing salt water fluids?