Iv Saline

[yogini]

Is IV saline something you need a prescription for? For those of you that use it as needed or regularly, which dr gives you your IV? My cardio does not administer it in his office. (He also said he thinks it won't help, but I disagree and know it at least won't hurt.) He suggested I try the ER, which I will do, but only if my tachy is out of control. (I can only imagine how they would react if I showed up just to ask for saline!) I am planning to call my GP first thing to see if I can get some from him, although I am worried he won't have it either. Would love to hear what any of you do.

Thanks,

Rita

[corina]

hi rita,

in my country (the netherlands) you need a prescription to get iv's saline. my docs (cardio, neuro) don't want to prescribe it. they don't think it will help me and if it would help they say it would be too much trouble for me (i think that's for me to find out!). my neuro once asked me if i was able to drink (didn't like the way he asked). i found out that most drinks make me urinate A LOT but a certain sportsdrink stays in my sytem longer so i drink about 1 liter of it per day.

good luck,

corina

[MomtoGiuliana]

My specialist will order it for his POTS patients if he feels it is warranted.

Katherine

[AJVDK]

My cardio wrote the orders for the Saline (9% Sodium Chloride), heparin, and the PICC line. Now my family doctor does the orders. I get fliuds every other day, and a health care nurse comes once a week to clean the dressing on the PICC, makes sure I am doing ok and bring supples. It took almost a year for me to finally get my doctors to right the orders. We tryied everything before going to fluids, from drinking not stop, to drug tht make you retain water, compression stockings, ans so on. Finally as we last try I was started on the IV Fliuds. It does help alot, but I would only do if nothing else has worked. There is a high risk of infection, ( more if you have a pacer, like I do), plus all the lost time being hooked to an IV pole, and having to travel with extra stuff, and the cost of the PICC line, and supplies, nursing care. I know it has helpped me alot, but I want you to know the down side too. I wish you the best!

[yogini]

Corina, that's a bummer -- you'd think we were asking for narcotics and not just salt water! My cardio is also hesitant -- he is nice but doesn't know much about POTS. I'm actually just looking to get one or two treaments of this for the time being. I know it helped me in the hospital and especially after I had my first TTT.

Thanks, Katherine. Does your specialist administer it, or do you have to go to a hospital?

Thanks, Amy. It's a bummer that it took so long to get it, but glad it's helped you. I won't need a PICC line, just saline through my arm. But I don't have much energy right now. If my doctors give me a hard time tomorrow, I will probably give up on this idea.

[MomtoGiuliana]

I do not believe he administers it in his office--I have never had it except in the ER (prior to diagnosis). But I know he uses it for his patients. I believe they have to go to the hospital for it.

How frustrating corina--I remember you mentioning this before. Perhaps you could share with your doctor published medical articles that indicate this as a POTS treatment.

I know when I have had IV saline in the past it generally causes a remarkable change in my symptoms. But it can be short-lived unfortunately.

Katherine

[Ernie]

Hi,

I need to go to the ER and they only give it to me after I have fainted ( and the ER is having a good day!).

[taylortotmom]

When I had my port, my cardio set me up with a home health nurse to teach my husband and I how to insert the needle and do dressing changes. An infusion company sent the supplies weekly. I received 2-4 liters a day when I had my port. And yes, it is prescription only

Carmen

[morgan617]

Good luck getting it at the er. I have never been given IV's, because they say my blood work does not show dehydration and don't believe me when I say that doesn't mean anything.....Anything like that has to have a prescription somewhere......

[yogini]

It seems like most of you get IVs regularly, which does not make things look good. I'm surprised IVs aren't used more often. I know there are some risks with the PICC line, but not sure about just getting a regular IV? I agree that it's only a band aid, but sometimes with this condition, a band aid can be a big help...

[MomtoGiuliana]

IV saline is considered a POTS treatment and specialists will use it. It is a bandaid as you say, but can really help even so in some situations (I think!). I don't know what the protocol is for determining when a patient should get one. I know at one point right after my period I felt really POTS-y and called my specialist and the nurse said, if you don't feel better today we can order saline for you...

Katherine

[dizzygirl]

hello ritA!

Um I spoke with my ans doc and he wrote me a script for IV fluids... only after we had tried virtually everything else..... he wrote what solution to use.. and i gave the orders to my loca heart guy.. and he called and worked out the fine wrinkles on the order..

Um if your insurnace will cover it you can have you fluids run thru at home.. or you could go to an infusion center...

In my case my doc admitts me to the hospital for fluids for a few days at a time..I get fluids depending on how im feeling.. some time it is weekly.. or a few time s a week.. other itme i can hold off a few weeks between fluid pick me ups..

My doc will not allow a picc line or anything.. so i get a line inserted everytime i get fluids.. but your doc may be willing to hook you to a picc line if you are going to be doing fluids daily.. or often enough..

good luck!

[Lukkychrm42]

So just out of curiosity, if the doc writes a prescription, I suppose it will say "as needed" or "daily" or whatever, and then how do you go about getting it? Will you be ordered to just go to the ER or urgent care or whatever anytime you need them, or if they're ordered for daily, would they do that without a PICC or port? And if you get a PICC or port, will they automatically set you up with the pole, supplies you need, and order for home health care or standing orders to go somewhere to get it taken care of every few days?

I need to do something, but IV saline hasn't really come up as a solution other than when my GI problems warrant it... and the docs are moving really slow when it comes to something like DDAVP which I am sure would help. Will get back on it when the semester starts! (on student health plan with on-campus care.)

Thanks!

[Kitsakatsa]

Hey! Let's start a rave club! It would look like a normal night club, but then we would have a hidden room with IV towers, 3% NS- ya know the hard stuff. Everyone could come and get all tanked up on saline: bring some share some. We could even make saline brownies...

[Kitsakatsa]

Seriously.

My RX says PRN and lasts for 1 year. I go to the hospital IV center. This is better than the ER. They will give you an IV, or access your port. I have a port-a-cath. I carry a copy of the RX with me in case I need to go to a different hospital due to travel etc. It speeds things up even if it is across state lines.

I am also set up with the same RX, different copy (ask your doc for 2) with home health. Your ins will tell you which company to use. They will give you the saline, supplies and pole. The poles are usually 1 pt disposables, but they get the job done and cost around $100. You keep this pole.

In order to do it at home, you need a picc line or a midline. I had no success with a midline and good success with a picc. This is a POTS blessing. Piccs are fabulous. This is great because you can relax in your own home and feel better. IV centers tend to fill up- so they are sometimes hard to get into when you really need fluids and they are full of people who can make you sick.

I would highly recommend home IV. In my experience, it has saved me. It got me through my MBA- there was no way that I could have the stamina without the extra help!!

Kits

[AJVDK]

So your club is it going to be BYOT (Bring your own tubing).....

No really if nothing else has worked I would really look into a picc and fliuds at home. To me doing at home know on has to know, plus no one seem to know about pots, so you don't have to explain it every time. For me I have the same nruse every week, and she is really nice, the rest if the time I am no my own, plus I get to pick the time I do the fluids, I like to do them at night, ad then I am already laying in bed, wacth tv, so I am not feeling like I am missing too much. ( Just my thought) Anyways wish you all the best!

Talk to you later...... may be at the club!

[Poohbear]

Rita,

How did your appointment go?

[yogini]

Thanks for checking in, Pooh. (I loved your poem to Melissa, by the way!). My PCP and cardiologist didn't know of anywhere that I could get IV saline other than the ER. This is frustrating and hard to believe in a big city. My cardio also kept insisting that he doesn't think that IV saline is helpful for POTS. His advice was just to take more beta blocker - but actually this has helped to control the severe tachycardia episodes and night sweats I was having. I don't like taking more, but I have no choice at the moment as the symptoms were miserable. I think the saline really would have helped me, and am disappointed for myself and for all of the others that haven't been able to get it.

I've realized that I need to re-start my search for a dr who is more willing to listen and work with me, so that someone is lined up the next time this happens. I'll do this as soon as I feel a little better...at least the worst seems to be under control now and still hoping things will be closer to "normal" in a couple of weeks.

-Rita

[AJVDK]

Rita,

Sorry to hear about your appointment. If you beleive this is your best option getting the IV, then keep pushing, it took my a year to get the doctor to listen, but now after they are see the difference they are keeping the orders. Listen to you body, and you know whats best, if a doctor will not listen go to another. It's sad that we have to do the work, and fight for treatment, but it seems that the only way to get things done. I wish you the best and keep us posted!

Amy