How To Ask Your Doctor For A Trial Of Iv Fluids?

[badhbt]

So I had a GI bug over the weekend and I got really dehydrated. My blood pressure was low and my heart rate was really high so I went to urgent care. They ended up giving me 2 liters of IV fluids. The next day I felt great, especially considering the day before. This makes me want to try IV fluids to see if it was a fluke or did it really help me. I have an appointment with my cardiologist tomorrow and I want to try a trial of fluids. Any suggestions on how to ask my Doctor? Any papers/research to help my case?

Thanks!

[sparrowkate]

Same thing happened to my daughter - IV fluids in an emergency worked great.

Following this, our consultant was happy to organise weekly IV fluid sessions for Issy but, as there are risks involved with this, we collectively agreed to try an NG tube first. She had this fitted 6 weeks ago and it has worked a treat. Might be something to consider as an alternative, less invasive treatment. Particularly if you feel you are regularly needing a fluid top up.

Issy has a narrow size tube, just for fluids (not one of the fatter ones for feeds). It was a bit uncomfortable for the first week, and we had to experiment with which foods she could eat with the tube in, then it settled down and has been great ever since. She has been squirting dioralyte through it and has significantly increased her daily fluid intake. Now she can drink much better normally and just uses the tube as a top up, or when she is having a bad patch. She says it is great!

[Christy_D]

My son's doctor is always open to suggestions that I bring him, especially if I bring in articles, etc... See link below.

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

The doctor arranged for a nurse to come to our house set up the IV and showed me how to switch out the bags. We did a five day trial(1 bag per day), but for my son the improvement wasn't enough to warrant continuing. We tried this before we got his diagnosis of MCAS, so I don't know if that has anything to do with why it wasn't as helpful.

I hope this helps.

[Sunshinegirl]

I have a child with a chronic illness. When I find something that works, I don't ask really.... I highly suggest in a tone that means Im not backing down.

For me, I say "this works, its what I need, lets try it, heres the science" If I get a "No" I ask as many smart questions (previously prepared) that are hard to make up answers for. I do this until I have exhausted the time allotment and befuddled the Dr. Then I get what I need. This may not be the best approach but I have found that Drs. have less time to think things through, no time to research and have a waiting room full of people. I provide the thought process, the research and then make time an issue. Yes, it is manipulative but when your quality of life depends on something as simple as an IV bag...its worth the intellectual tantrum.

[nomdeguerre0850]

I like Sunshinegirl's approach. :-)

I guess I'm a bit similar. I do the research and bring in an article from a scientific journal in which I've highlighted a few pertinent sentences about what I want to try. I let him/her know the reasons I want to try it and then listen carefully to what the doc has to say. Sometimes they bring up something I hadn't thought about that would make my suggestion a bad idea, or they may wish to try an alternative first. We are a team and share ideas.

I first tried IV saline with a naturopathic physician. My husband was with me and was astounded as he sat and watched my color change. I was more surprised when I could stand up again for a few minutes and also felt so much better. I went to my primary doctor with my article, recounted my experience, answered some questions and we figured out the logistics to do a trial.

Now, three years later, after three PICs (each replaced after 1 year), I have a port and am still administering 1 liter of saline every morning. I started droxidopa (Northera) about a month ago and feel so much better, I'm want to try decreasing and maybe even stopping the IVs. One step at a time. I don't want to tempt fate and crash again. I'm already out of my wheelchair.

Good luck working with your doc. When you have mutual respect with your doctor, it is transforming.

[Becia]

I kinda had to beg my doctor, but after he realized I was needing to be hospitalized about every other month for major hydration, how every time I ended up in the ER, they'd give me one liter and I would be able to stay halfway alert, and at the major push in of my Power of Attorney and best friends, he managed to get a PICC line placed. Originally he wanted to do a port, but the doctor wouldn't place one not knowing when it may come out, so PICC has been my lifeline. Originally I was once a week, but after one week of that, he upped to three times a week at a slow drip (8-10 hours seems to be optimum for my body, the slower the better my body seems to absorb it all and not hit my kidneys all at once). about three months of that, and we bounced it up to every other day, which is where I've been since about August, and will be to at least May, when I do a reevaluation of my therapy with him. My first PICC came out on its own in March, so the next day, they placed another, but it seems like when this one will fail, the PICC line team is going to fight to get me a port, because of the risk of infection being less with them compared to what I have now. I'm very lucky, no infections, just some skin irritation from the dressings, and while the other was beginning to not flow as well (began to scar and clot up, but fell out before there was an issue with that), my new line is great.

in addition to my begging, I had presented him with info of how this has been helpful. The first hospitalization they gave me 8 liters over three days, and it as amazing how different I felt. The second instance that showed how much this helps me, they gave me lactated ringers instead of just saline, and the extra electrolytes really helped. my POA and roommates were shocked at how that helped, I was able to sit up with my feet down to take a stroll around the hospital, and still remain somehow coherent.

While my therapy hasn't gotten me out of a wheelchair (in it for EDS issues, as well as still being very sensitive to positional changes and passing out within minutes of standing), it has helped me a lot, very noticeable on the days I have to be upright in my chair for lengths of time. I like to be able to prop my feet up, but the saline at least helps me have a blood pressure to the point if I can't, I have a bit easier time with the feet down. Stil have a lot of blood pooling, but the extra volume helps.

I also have issues taking in enough sodium through my gi system, so the 9,000 mg I get via IV, slow drip, really helps. I joke on days I get my IV treatment, I get real food and I enjoy eating. Days I don't, it's salting, throwing up, and more fluids than food,

[badhbt]

Thank you for your comments. My Doctor agreed to a trial of IV fluids. I will keep you posted on whether they help me or not.

[maggie]

Good luck with your new treatment hope it works out for you.

[sophiagrace]

hi everyone! i am also in the same boat. i have several chronic illnesses including POTS.

i end up in the er at least once a week for migraine meds and 2ish liters of fluids.the next day. i feel so much better POTS wise. i have an appointment with my neurologist soon and i really want to bring up iv fluids on a regular basis. any advice? hes very understanding and really listens im just worried he will not like the idea for whatever reason.

[Pistol]

Dear @sophiagrace - after years of having to go to ER and being admitted to hospital every 6-8 weeks due to syncope, seizures and inability to be upright from POTS ( each time getting IV fluids with complete improvement ) my PCP finally approved me for a port and home infusions. They have changed my life! I have had the port for over 2 years and get 1-3 liters of LR every week, I have only been in hospital once since starting the fluids, and barely ever have seizures or syncopal episodes. My BP has come down to normal, even low, levels and I could stop and minimize some of my meds. 

One of the reasons my PCP finally gave in to my request for a port and home infusions was that often ER docs and hospitalists refused to give me IV fluids b/c I could drink ( I always peed all oral fluid out faster than I could take it in, but not so with the IV fluids ). 

Of course it was already proven and well documented in my medical record that IV fluids worked like a miracle on my often unexplained severe POTS symptoms, so I did not have to convince him of that - only that I needed them weekly rather than only during flares. They do not only help as a treatment but also as a prevention of POTS symptoms. 

Here is an article you can show to your doc that was written by Dr Blair Grubb, one of our Top autonomic specialists internationally. It explains that IV fluids are a proven, effective and approved treatment option for POTS, especially of medication refractory.

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

Before the port I had an order to get 1-2 liters weekly as needed for 4 weeks when in a flare, but I always had to wait for the flare to come before I could get them as an outpatient. Now, since I get them every week, I don't flare as frequently and not as severe as before. 

I hope this is helpful to share with your physician! 

[CallieAndToby]

42 minutes ago, Pistol said:

Dear @sophiagrace - after years of having to go to ER and being admitted to hospital every 6-8 weeks due to syncope, seizures and inability to be upright from POTS ( each time getting IV fluids with complete improvement ) my PCP finally approved me for a port and home infusions. They have changed my life! I have had the port for over 2 years and get 1-3 liters of LR every week, I have only been in hospital once since starting the fluids, and barely ever have seizures or syncopal episodes. My BP has come down to normal, even low, levels and I could stop and minimize some of my meds. 

One of the reasons my PCP finally gave in to my request for a port and home infusions was that often ER docs and hospitalists refused to give me IV fluids b/c I could drink ( I always peed all oral fluid out faster than I could take it in, but not so with the IV fluids ). 

Of course it was already proven and well documented in my medical record that IV fluids worked like a miracle on my often unexplained severe POTS symptoms, so I did not have to convince him of that - only that I needed them weekly rather than only during flares. They do not only help as a treatment but also as a prevention of POTS symptoms. 

Here is an article you can show to your doc that was written by Dr Blair Grubb, one of our Top autonomic specialists internationally. It explains that IV fluids are a proven, effective and approved treatment option for POTS, especially of medication refractory.

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

Before the port I had an order to get 1-2 liters weekly as needed for 4 weeks when in a flare, but I always had to wait for the flare to come before I could get them as an outpatient. Now, since I get them every week, I don't flare as frequently and not as severe as before. 

I hope this is helpful to share with your physician! 

I don't have any veins just one and it's all scarred up so I'd have to Get a port. I think that's the issue with me. 

[Pistol]

@CallieAndToby22 - there are other ways to give IV fluids, not only a port. You can have a PICC line, that gets thread into your arm and goes to where a port ends ( in the SVC ). Personally, since you suffer so much I think you would be a perfect candidate to weigh the benefits of permanent or temporary IV access higher than the risks ( blood clots and infection ). But this decision is entirely up to your physician.