My Dr Is Suggesting Iv Fluids?

[Racer]

Hoping someone can share there experience of what it is like to use daily, weekly, or as needed (but often) IV fluids?

My cardiologist suggested prescribing me fluids. I found the thought a bit shocking and just said no. I don't know why I quickly said no, since the reality is that I end up at the hospital 3 times a month just for IV fluids. I only go for fluids when absolute necessary (cant get out of bed and vomiting). I am considering it, and I know regular IV fluids would help, but I just don't know if the reward is worth the risk?

[Chaos]

I have done saline infusions as needed but found them so helpful that I was doing them 3x a week regularly thru the summer. I think if you don't do a port or a PICC line the risks are pretty minimal.

I went to an infusion center for them. For me having the saline warmed and infused at a slower rate (1 liter over 2 hours) helped me retain the fluids better. When they went in fast, they came out faster.

[E Soskis]

IV fluids work well - I used them regularly in the past. I agree that the faster they infuse, the faster they go through. 1 liter over 2 hours worked well for me. I was fortunate enough to be able to hang them while I worked so, I didn't miss any work time. The only draw-back was the constant use of peripheral veins which eventually became scarce and difficult to obtain. This took a couple of years so, it is not problematic right at first. Would your physician consider hanging the fluids in his/her office? Some physicians have IV capabilities in their offices. Would a home-health agency come hang them for you at your home or job (if employer agreed)? The home health agency I use pretty much will accommodate whatever I need and request. If you can learn to start your own IV, you may be able to order your own supplies and fluids through an agency and simply do it yourself. Once I had a port inserted, my physician did not want me to access my own port and a port or central line requires the use of an IV pump and not straight gravity drip. I then had to go to the home health agency or the ER for fluids - kind of limited what I was able to do and how much fluid I received. I have a PICC line now and have been giving myself home IV antibiotics for the past month - I have had no difficulties but, can't keep the PICC much longer - as long as you have the proper supplies and flushes, you could do a lot for yourself at home. Good luck and give the IV a try - you won't know until you try it a few times whether or not it will work for you.

[looneymom]

Hi Racer,

I would give it a try. I have heard that some people feel much better afterwards.

Rachel

[Racer]

I think I am going to call and ask for the prescription. When I go to the hospital for fluids, they usually just open up the flow and dump it in me as fast as they can. A few times I have had fluids threw a pump, it was a big difference from the drip.

My biggest worries are fear of a port or picc line. I am also worried about how it would affect my life... what this means in the whole picture of getting better.

[Racer]

Scratch that, I called today and I was told by the nurse that the dr didnt know what I was talking about, he didn't have that in his notes. He didnt remember anything about the visit or anything about me as a patient. He said that I should just take a extra florinef. I need the extra hydration when I am vomiting (I explained to him).

No more trips to the ER for this, since my mom now gets mad at me when I go (for a few reasons). I have run out of help and I give up.

[Lethargic Smiles]

I used to only get IV fluids, like you, when I was extremely ill. If I hadn't kept down water in a day and I was in pre-syncope, I would decide it was time for fluids. My thought process was to merit hospital personnel and sticking an IV in my arm, I had to be feeling awful. I still feel about the same on hospital personnel which is why I have a standing order. This allows me to schedule (different hospitals are different, but the one I live by now only needs a few hours notice) an appointment and not take up an ER bed and ER staff. If it is outside of the outpatient business hours, I go to the ER. As for the sticking and IV in my arm... all that is going in is sodium and water. I do much more unnatural things to myself in the form of the medication I take throughout the day. I now go in as a preventative measure when I find myself in situations I know will lead to dehydration or presyncope.

I wrote a whole blog post on my experience with IV fluids (getting standing order/dealing with hospital/when I know to go, etc...) and experience at different hospitals. I need to update it to include a bad ER experience recently where they wouldn't honor a standing order, but other than that, the standing order has made life much easier. I don't have to explain my POTS, the nurse can just start the IV and I can rest in peace.

Here is the post: http://lethargicsmiles.wordpress.com/2013/09/15/getting-iv-fluids-for-pots/