IV Fluids for OI--how to Rx?

[leela]

Hi all,

An out-of-state practitioner has recommended IV fluids for dysautonomia and chronic dehydration but neither she nor my local care provider (who is on board) seem to know how to Rx it so that it can actually be dispensed to me.

My labs show very low ADH and high Osmo, so the issue of dehydration is clear.

Has anyone been prescribed IV fluids, and if so, do you know how it was written up?

The infusion place that will take my insurance won't even give it to me unless there is a medication Rxed with it.
I'm getting more confused the closer I get to actually receiving this treatment.

Any input from patients/doctors would be most appreciated.

 

[jimells]

I've never actually seen the doctor's orders, but when I ask the Emergency Room people for a liter of IV Saline, nobody acts like they've never heard of such a thing. It seems to be quite routine.

I tried to get a standing order for the hospital's infusion unit or at home, but the primary care provider refused, and refused to give a reason. Fortunately after I explained POTS to the ER doctor, he was willing to order it, and I ended up at the ER three times to get the saline last autumn. It's much better than fighting with the idiotic GP, but I have to go through the whole ER routine each time, and maybe wait a while for a bed.

 

[leela]

Thanks, @jimells. This whole weirdness about a bag of fricking saline...it's probably easier to get heroin! I just don't get it. I'm so sick and having to fight this hard for something so simple and innocuous is driving me mad.

 

[Vineyard1]

1 Liter of Normal Saline is like a godsend to me. The only way I can get it is when I have IVIG every 3 weeks and they hang a liter with it. I am so grateful for it.

 

[jimells]

There is actual evidence to support the use of IV saline for POTS, if one can get the doctor to read it and pay attention:

http://www.ncbi.nlm.nih.gov/pubmed/26446285

Intravenous Hydration for Management of Medication-Resistant Orthostatic Intolerance in the Adolescent and Young Adult.
Moak JP1, Leong D2, Fabian R2, Freedenberg V2, Jarosz E2, Toney C2, Hanumanthaiah S2, Darbari A3

Orthostatic intolerance (OI) is common in teenagers (T) and young adults (A). Despite treatment with oral fluids, medication, and exercise, a significant number have symptoms from multiple organ systems and suffer low quality of life (QOL). Previous studies showed that acute intravenous (IV) hydration (IH) could help restore orthostatic tolerance

5) Overall, 79 % (n = 31) demonstrated clinically improved self-reported QOL.
6) Six patients who discontinued IH requested to restart treatment.
(7) Complications consisted of upper extremity deep vein thrombosis (n = 3) and infection (n = 4).

IH is an effective therapy to improve QOL in T&A with medication-resistant OI. Most patients continued to report improved QOL once IH was discontinued. IH should be considered a therapeutic option in medication-resistant OI patients with low QOL.

it's hardly a robust study but it shows a large effect size. A proper study would be nice, but who would fund it? There can't be much of a profit margin in normal saline.

 

[Gingergrrl]

I'm so sick and having to fight this hard for something so simple and innocuous is driving me mad.

It was not innocuous for me and one bag of saline gave me pulmonary edema and I was rushed to the ER. Never in my wildest dreams could this have happened so just wanted to mention in case it is relevant to anyone else (b/c of third spacing or any other reason.)

But to answer your question, my cardiologist prescribed it and I had it done at the outpatient infusion center at his hospital. If you have a doctor willing to prescribe it, that is the main thing you need. I was not well enough to do it at home with a nurse and if I ever attempt it again, it would have to be in a hospital (but if you have PCP/GP willing to order it at home, that is a second option.)

 

[Vineyard1]

It was not innocuous for me and one bag of saline gave me pulmonary edema and I was rushed to the ER. Never in my wildest dreams could this have happened so just wanted to mention in case it is relevant to anyone else (b/c of third spacing or any other reason.)

But to answer your question, my cardiologist prescribed it and I had it done at the outpatient infusion center at his hospital. If you have a doctor willing to prescribe it, that is the main thing you need. I was not well enough to do it at home with a nurse and if I ever attempt it again, it would have to be in a hospital (but if you have PCP/GP willing to order it at home, that is a second option.)

That is very scary...I am sorry that happened to you.

 

[leela]

Gee, @Gingergrrl that's terrible! I guess that explains why everyone is so weird about it. (I always feel so much better when I get fluids.)
What do you mean by third spacing? I have the dumbs real bad lately.

My GP will Rx it (she's already written an Rx for port placement), but the infusion place that will dispense the saline & lines won't take my insurance. The one that does take insurance won't dispense it without an Rx for some other medication with it. I'm totally confused about the whole deal.

What I'd love to know is how to have her write it up (like what ICD 10 codes and what dosing) so that the infusion place will give it on insurance and I can eventually do it at home once I'm not so dumb.

 

[Gingergrrl]

Gee, @Gingergrrl that's terrible! I guess that explains why everyone is so weird about it. (I always feel so much better when I get fluids.)
What do you mean by third spacing? I have the dumbs real bad lately.

My GP will Rx it (she's already written an Rx for port placement), but the infusion place that will dispense the saline & lines won't take my insurance. The one that does take insurance won't dispense it without an Rx for some other medication with it. I'm totally confused about the whole deal.

What I'd love to know is how to have her write it up (like what ICD 10 codes and what dosing) so that the infusion place will give it on insurance and I can eventually do it at home once I'm not so dumb.

@leela First of all, you are not dumb so don't even worry about that. I posted this only b/c IV saline seemed so incredibly benign and it was one of my various treatment attempts that almost killed me! I have found no one else that this happened to but it is one of those things I share just in case.

Third spacing is found in MCAS (but possibly in other diseases?) in which histamine makes the membranes more permeable so the fluid does not go inside or outside of the vascular space and instead into a third space like the abdomen or lungs. I am sure someone more scientific can explain it better than me. We now suspect this is what happened to me b/c the saline was infused too fast but we are not certain. In my case the saline also had a huge amount of IV Magnesium mixed with it which may have played a role.

If you are getting a port, that adds another level of complexity which I did not have and just had a peripheral line in my arm at the infusion center. If the center won't take your insurance, I would find another place as the infusion center I went to ended up billing my insurance over $5K and my portion was $1K just for freaking saline (and the ER cost was cheaper than the saline.) We were stunned and spent close to a year contesting this bill.

I do not know the ICD-10 codes and cannot help there! Maybe you can Google the codes but your doc or the infusion center should know?

 

[leela]

Wow, thanks for all that, @Gingergrrl. I'm really sorry you had to got through that. IV saline is like $5 a bag--apparently the upcharge is the sterile lines and equipment, but that still sounds totally absurd!

In terms of codes, I should clarify my question as to what condition (POTS? Chronic dehydration? Other?) would be the code most likely to get it approved by insurance?
Does anyone know?

 

[Gingergrrl]

Wow, thanks for all that, @Gingergrrl. I'm really sorry you had to got through that. IV saline is like $5 a bag--apparently the upcharge is the sterile lines and equipment, but that still sounds totally absurd!

In terms of codes, I should clarify my question as to what condition (POTS? Chronic dehydration? Other?) would be the code most likely to get it approved by insurance?
Does anyone know?

It was absurd and they charged for the infusion center, hospital space, nursing time, sterile equipment, etc, etc. Each piece of gauze was probably hundreds of dollars, it was insane.

I would think POTS or dehydration would be proper codes?

 

[SickOfSickness]

Normal saline is "Sodium chloride 0.9%". It's that percentage of salt in water.

Another common prescription is saline with "5% dextrose" or "D5".

 

[beaker]

It was absurd and they charged for the infusion center, hospital space, nursing time, sterile equipment, etc, etc. Each piece of gauze was probably hundreds of dollars, it was insane.

I would think POTS or dehydration would be proper codes?

The charges are outrageous. I gave my cat fluids. You can buy them by the case for under 50 ( depending on pharmacy and if you have them delivered ) Lines and needles also cheap.
The cost is in the nursing and administration.
and it is outrageous what you were charged.

I've gotten a few rounds lately. I don't know what my dr. wrote them up as and I don't know if I will get any sort of bill. I get vitamins in the fluids so that it gives more of a medical reason for getting them.
If I could put my own cath in I'd order them from the place I got them for my cat and do it myself !

 

[halcyon]

In terms of codes, I should clarify my question as to what condition (POTS? Chronic dehydration? Other?) would be the code most likely to get it approved by insurance?

I don't think there is an ICD code for POTS yet, someone correct me if I'm wrong.

 

[Gingergrrl]

I don't think there is an ICD code for POTS yet, someone correct me if I'm wrong.

You could be totally right and I have no idea! I had assumed that IST, POTS, etc, all had codes but nothing really shocks me any more.

 

[jimells]

The one that does take insurance won't dispense it without an Rx for some other medication with it. I'm totally confused about the whole deal.

This reminds me of an old movie, maybe Jack Nicholson. He wants toast, but it's not on the menu so he orders a BLT then asks the sever to "Hold the bacon, hold the lettuce, and hold the tomato".

It's so bizarre that you can get an order from the doctor, but the treatment centers won't honor it, while I have a willing treatment center, but the doctor won't write the order.

With such an irrational system, it's a near miracle when anybody gets a useful treatment.

 

[SickOfSickness]

I don't think there is an ICD code for POTS yet, someone correct me if I'm wrong.

You're right. They would code it as unspecified autonomic disorder.

 

[leela]

I already have a Dx of Dysautonomia of the CNS(for which there is a code), you'd think that and the chronic dehydration would suffice?!

 

[Gingergrrl]

Good luck @leela and I hope you get it all figured out. If I ever attempt IV saline again (which would only be after an upcoming appt with an autonomic specialist if he thinks it could help), I would have to do it at hospital and over 6-10 hours (very slow infusion) to hopefully avoid what happened to me last time. But since yours is more straight-forward, it must be so frustrating to be in limbo. Keep us posted!