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Ernie
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Hi,

I am having a terrible time getting an IV saline at the ER even with a permanent prescription and my NIH medical that says I need one.

I am thinking of learning how to inject it myself so that I don't need to go the ER anymore.

I am not a nurse so where can I learn how to put the needle in my vein? Do I need a nursing class? Do any of you learned how to give yourself the IV without the PICC line?

Where do you buy the IV saline bags, the needles and all the stuff that goes with it?

Could :) you could share your experience with me!

Thanks for your help.

Ernie

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Ernie,

I don't know about where you live but here in the U.S. I think you would have to have a prescription to buy the IV Saline.

In terms of doing it yourself; I would think that would be hard. I know for me it takes most nurses both hands to hold the vein still enough to get the needle in correctly.

What is the reason you are given as to why they don't want to give you the IV when you have an order for it?

Good Luck!

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Hi Ernie, I think that you can have homecare services come and initiate the IV for you if you have a prescription. If you can discuss this with your doctor, they should be able to help set everything up for you to have this done in your home. Are you having a very hard time having stopped your meds? I have been thinking of you and hope you are managing OK. This must be an awfully difficult week for you. Hang in there. Perhaps someone could call a homecare service for you and see exactly what you'd need to do to have this arranged. Take care of yourself. Laura.

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Hi Poohbear,

I think I could ask my PCP to give me a prescription for the IVs.

The reason the doctors give me for refusing the IV is that they don't believe I need one. Even when they see me having adrenaline rushes, tremoring like *)( and paralysed. They rely on the fact that my BP is in the normal range.

I am getting so discouraged with ER doctors. When I was undiagnosed I got mistreated and now that I have all the medical proof they need they are still mistreating me. I am stuck in a viscious circle of not being believed and being totally ignored.

I really need a plan of action so that I don't have to go through **(*&&(* everytime I crash and need an IV to stop my adrenals from going haywire.

Laura,

I will check with the homecare. I have been having problems with them too. My problem with the health system is that my treatment is not on their protocol so they consider that they are doing me a big favor to give me an IV. I only asked them twice in 2 years and now the last time I asked them they said I was too much trouble and I should go to the ER. That's why I want to learn to do it myself. This way I will not depend on anyone else for getting my treatment.

I am finding it difficult to be without meds and I am trying to keep myself busy watching TV. Thanks for thinking about me.

Ernie

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Hi Ernie,

Why wont your doc order a pic line?

You shouldnt do IV's on your own, as frequently as you need them, you would tear up your veins. I wish i was there i would do it for you.

You can order saline by the case with a doctors order from a medical supply company in the US. I have saline for my horses i purchased through an online vet supply. Its the same stuff as in the hospital, same packaging and everything.

At the very least you should get your doc to give you a liter of saline in his office when you need it.

Im sorry your healthcare system is the way it is. I just went to a specialist who claimed to know pots and she told me she never heard of a case as severe as mine. So I understand the fustration. Wish i could be of more help.

Peace

Janine

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Hi, Ernie. I have quite a bit of experience in the iv department. I have a port a cath in my chest. This means there is a permanent cathether that goes directly to my heart. The entire purpose of having this put in was to be able to give myself iv's at any time without having to go to the hospital. Fortunately, I have an awesome cardiologist who STRONGLY encouraged me to have this done to maintain some control over my symptoms. I was squemish at first- but let me tell you, my quality of life has improved dramatically since having this fluids as needed (which for me is unfortunately, twice daily). I simply hook myself up. I do not have to stick myself to do an iv because I keep my needle in. My husband was taught by home health how to put the needle in (it does have to be changed at least weekly). I can take the needle out to shower or swim and then my husband replaces the needle for me. Some people do the needle themselves but I just don't think I can put a needle in my own chest! Anyway, that is how I have solved this problem. Now, whatever doctor wrote you the subscription for iv's as needed may need to advocate for you. I do not know if you can really be taught to "do ivs yourself" without some kind of permanent (or semi-permanent line) in you. Explain to the prescribing doctor how much the bags help and that you are really having a hard time getting other doctors to honor his prescription. He might be willing to prescribe home health to teach you how to "stick yourself" but honestly, I think it would be hard to do- especially, when symptomatic. But, either way, let the doctor know what is going on- you might can reach a compromise. Good luck!

Carmen

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Hi again,

Just thought of this. If you have a standing order for iv saline you should be able to call up the outpatient surgery dept of the hospital and tell them you have a prn order for iv saline (dont go into detail, they dont need details they only need the order), and try to set something up with them. I know in the US the outpatient surgery dept does iv antibiotics, blood transfusions, iv therapy etc...

If that doesnt work call the head of the ER and tell him/her that you have a standing order for IV saline PRN and would like to ber able to get it without a hassle.

Janine

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Guest tearose

HI Ernie,

I haven't had home infusion saline, only home infusion rocephin, which was for lyme disease.

I had a picc line put in so all I had to do twice a day was set up the egg shaped medicine container to my picc line and hang it on the IV pole and let it drip. You DO NOT want to set up the line all by yourself! It takes two or more very skilled hands to place the port/ heplock or picc line into the correct place!

I admire your continued perseverance but installing an IV line should be taken to the medical professional! Please do not loose your assertive spirit. Get the doctor to address this problem with you and find a way to have THEM set it up for you! Suggest that the doctor take measurements of the "before and after" the saline infusion! If it helps you will see and feel an improvement. This doctor must realize no body would put themselves through this if it wasn't helpful!

best regards, tearose

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Hi,

can you explain me what a picc line is?

When I asked my (former) neuro about getting saline, he just laughed and asked me if I could drink. And I told him I could (didn't understand his question at that time), he then told me I didn't need an IV because I can take liquids by mouth. In my country they don't see the need for getting an IV. It makes me feel a bit like: what if this simple thing would be the solution for me??? I want to try EVERYTHING before I give up. Don't think it will ever happen.

I think you could aks your PCP about getting you the prescription for taking IV's at home. It would help you and make life easier on you when you have to do tests!!!

Best wishes,

Corina

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Thank your very much for your help. You are giving me solutions to a problem that I thought was helpless.

I have been thinking about a port a cath but I am a bit nervous about getting an infection. It might be the long term solution.

I have a permanent prescription for an IV but the ER doctor did not want to give it to me.

I was desperate because the ER doctor wanted me to leave but just the movement of the gurney would trigger the adrenaline rush and paralysis so there was no way I was able to ride home.

So after waiting for 7 hours at the ER (the ER doc thought that I would get better without any treatment) I called my PCP who wrote the permanent prescription and asked him if he could talk to the ER doctor and he told me that he did not want to get involved with my problems and that I had to negotiate by myself.

So my best friend pleaded again with the ER doctor and I showed him my NIH medical file (high adrenaline, low blood volume) and he was still making fun of me. At one point I asked him if he really cares about me or if he only wants to make me look like a fool. So he looked in that hospital medical file and he saw that I had seen an endocrinologist 2 months ago. He went to call him and I guess the endo backed me up because after 11 hours stuck at the hospital I finally got the IV.

This made me realise that I need to find a PCP who will back me up with my permanent prescription. Not only does he have to write the prescription but he has to be willing to validate me when the ER doctor does not believe in POTS.

Janine, I will call the hospital outclinic and see what I can set up there.

I have never seen or heard of a diabetic having so much trouble getting his insuline has I have getting my IVs.

Ernie

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Oh ernie, I am so very sorry how you are being treated by the doc's. They need a swift kick in the ***! :) it makes me feel so angry for you.

If you can, can you look into getting a new PCP? maybe call Dr. Grubbs office and see if they by chance know of a PCP doc in your area, or at least somewhere close to you.

Untill then can your endocrinologist, can he/she help you get things set up for home Iv's, maybe through another health care agency? or is that the only one near you?

But I am so sorry, that you are haivng such a hard time, I wish you well.. and hope that you find some help soon..

Linda

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hi ernie -

i too am so sorry you're having such a crummy time with the docs. it never fails to frustrate me beyond end. i too have had "challenges" convincing docs that IVs help when my BP isn't drasticly low. i only recently have the written order from vanderbilt though so haven't really had to try since then. it's a bum to know that it may not even make a difference. luckily though i do have a supportive (albeit overwhelmed with me) PCP, so as tough as it is i would encourage you to try to track one down; even if he/she isn't an expert it's great to have an advocate in your court.

i have joked many a time about wishing i could start my own IV at home, but like others have said it is NOT something you can do on your own without a line already in or without home health assistance. i hadn't realized until recent posts that home health can be an option prn/intermittantly, so am going to bring that up with the doc since when i'm most in need of the fluids i'm usually in the worst place to be getting to the urgent care place/ER to get them.

one other thought...do you have any urgent care type places by you? for me these have generally been better & easier & less crazy than ERs for fluids. my docs office doesn't administer them but if i'm not bad enough for the ER (aka if i haven't already blacked out in public & been loaded into an ambulence against my will) i use the urgent care place instead. it's also cheaper.

hang in there. i had to be off meds both for local testing this winter & at vandy & know how horrible it was. let us know how the tests go...i'm hoping well!

:-)melissa

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Ernie

This ER doctor's behavior was downright bizarre. I am so sorry that you went through all of this to get a "simple" IV. Is part of this b/c of a particular medical philosophy about IVs in Canadian health care? It seems like in the US, ERs will give you an IV under nearly any circumstance--even when you DON'T want one.

I hope you can find a solution that will work for you better than a trip to the ER, in the longer term.

Take care,

Katherine

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Guest tearose

Hooray Ernie! You are getting somewhere!

Now hopefully the saline you get will help you feel more energized!

corina, a picc line is a long tube that gets inserted into a vein in your arm and it goes up to the vein in your collarbone area. It makes getting daily or frequent IV infusions easier on the veins of your arm. You only need to change this line over the course of months whereas a "heplock" or regular "IV lock" must be changed every few days. A picc line is not pleasant to have "put in" but it is good to consider if you need long term IV medication and you don't want to wear out your veins or have them collapse. (This is from my experience.) Anyway, I hope this is more information than you will ever need corina!!!

best regards all, tearose

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Hi,

I just called the ER where I got stuck last week and I asked them what I could do about having my permanent prescription respected. I explained to them that I have a rare form of syncope where my body BP does not fall but I don't have enough blood flow in my brain. It is some kind of cerebral auto disregulation. So the ER doctor told me to have this added to my permanent prescription and I should have no problem in getting my IVs from now on.

I also lef a message with the local health department to inquire about home care IVs.

Thanks again for you help.

Ernie

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ernie -

glad to hear that you seemed to have a decent discourse with the ER doc you spoke with on the phone. hopefully it will help straighten things out (even though it shouldn't have been an issue in the first place!)

:-)melissa

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Hi,

Well, I finally found out why the ER doctor accepted to give me the IV after waiting for 10 hours last Monday. He had called my endocrinologist who works in the same hospital and the endocrinologist told him to go ahead with it.

I went to have some blood tests this morning for the endocrinologist and he told me about it. I thanked him for his help. He also gave me an IV right after the blood test so I was able to leave the hospital 3 hours later. It made me feel so wonderful to be respected and treated like a sick person and not like a "wacko". So I had the whole day to watch TV and relax. Nice change of pace.

So I will be able to go out with my wheelchair tomorrow and enjoy myself instead of being a couch potato for the next 4 days.

Thanks again for your help. Things are changing.

Ernie

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  • 2 weeks later...

Ernie,

I am so sorry for your experiences. Unfortunately, they don't seem to be at all uncommon. Though I have the actual diagnoses, I'm finding a hard time finding ANYONE willing to treat. None of them seem to understand that this whole thing has MULTIPLE symptoms. I have been made fun of, put down, sent up for psych evals that all came back fine - much to THEIR surprise...talk about degrading! I feel like I'm paddling upstream without a paddle right now. I've lost my job because of it and am quite honestly very discouraged. Trying to get disability because I have both dysautonomia and fibromyalgia...and they seem to feed each other. I'm positive that I'm not the only one on this site that understands the nature of fighting for SSI! I think these folks need more than a swift kick...though I wouldn't wish it all on my worst enemy, I believe if they had to experience it for 48 hours, views of all this would be very different. I just know that I am beyond grateful to have run across this site today. Though there is no physical relief from it, the emotional release has been beyond helpful. It's been the bread crumb of reassurance that I haven't lost my mind. Thanks to all who have posted here!!!

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Ernie, I have a couple suggestions:

First, can you PCP give you an IV infusion in his/her office? There was a time I was going every day for about 10 days to get me out of the POTS whole.

Second, if your PCP can't/won't give it to you, perhaps you can get a prescription to have it done at the "Infusion Center" of a hospital as opposed to an emergency room.

Either seems to work in the DC area. Perhaps one or both of these will work for you.

Lois

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Thanks Lois,

I will see my PCP next week and see what he can do to help me. I hope he has enough courage to stand up for me. He has let me down twice lately. If he is too frightened I will find another one.

Ernie

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ernie,

i'm a little out of the loop these days, but i wanted to chime in (sorry if this has already been written)...

i had IVs for the first time after surgery. they helped at first and then not much after. i had them every other day for over a month. if they work, they should give you 24-48 hours of improved symptoms.

at first i went to the hospital over and over for them and got a new IV each time. but then, i watned to be able to get it done at home since i was so incredible weak and sick, so we had a PICC line inserted and my poor parents had to do the inufsions. while it was a good thing to have them done at home, the PICC line made me miserable.

i jumped for it, thinking it was a great solution, but in the end i was miserable from it but we couldn't quite pinpoint it until it was out. it pinched the vein or something and caused me a lot of discomfort. i could not hold my arm in certain positions without it causing me tachycardia. it was very sore under my arm and along the whole line. after i got it removed my fast heart rate improved immediately, so it was obviously irritating something.

then, it took until just a couple of weeks ago for me to stop having the discomfort from where teh line ran. the entire time it was in i could not lie on my left side at all without getting chest pain.

it was not fun. i'm not too gung ho to get one ever again. my body reacts so strongly to anything foreign.

i am NOT telling you this to scare you. i am telling you b/c i wish i had had more info. to make a better decision. PICC lines are so common and no one thinks they will cause problems, except infections. but i really think it made things worse for me. i know that you too have a body a lot like mine...very sensitive to things.

it's just some 'food for thought' as we would say in america. if you find that IVs do help you and you are able to get a standing order for them...that would be great...then, you could make the decision about a PICC line. there is another type that stays in but doesn't go up as high into the chest...but i forget what it is called right now. that might be better.

anyway, it is such a hassle to go to the er or whatever for them though. ugh!

my understanding is that they work for POTS patients sometimes, but medically it's not really understood why they can help so much.

okay, that's it for now. does this help at all???? it's certainly not brief! sorry.

i just wanted to let you know my story so that it might help...i want you to have a good experience with the IVs, especially if they help you...

emily

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Thanks Emily for sharing your experience. I appreciate it.

I don't really like the idea of having a foreign object in my body all the time so my preference for the time being is having the needle in only when I need the IV.

I am finally starting to find some doctors who are willing to test me some but it's such al long wait. I would like to go in double gear but you know how it is here!

I found a doctor this week who specialises in catecholamines and he is very very interested in my case. I was so surprised that I was in a stste of shock when I left his office. I am used to be thrown like an old shoe and this guy wants to test me! Can you imagine how surprised I was. For 2 days I thought I was dreaming!

He has some ideas on a different treatments he could try but he did not mention it yet because he wants to go through my whole medical file so as not to repeat the same tests. He does not take any new patients but when I sent him my catecholamines results he made an exception because he had never seen such high result in his life and he wanted to see how I look like. I am very confident that he genuily wants to help me. He looks a bit like Dr Grubb and Dr Goldstein in his personality, that is professional, human, competent and kind.

I'll keep you posted when I have more news.

Ernie

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