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Iv Fluids


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So I have been fainting about once a week from my POTS symptoms. I have been going to the ER to get IV fluids. Upon arrival of the hospital, I am super weak and can hardly walk and talk. After giving me a bag of IV fluids, I am literally a different person and feel great! I have been taking my salt pills and drinking plenty of fluid like my doctor has suggested, but it doesn't seem to be helping. Is there a way to ask my doctor for weekly IV fluid infusions or an at home PICC line? I know they both have risks associated with them, but I honestly believe it would improve my quality of life.

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Sorry you are having a rough time... I went through a period last year where I was in the ER

for fluids multiple times a week and it's certainly miserable.

I have had several different experiences getting PICC lines at home and also trying to get IV fluids at home. There are valid concerns with PICC lines and other permanent access lines, personally have had many blood infections from them. Usually mine were placed because I could not get in adequate fluids due to gastroperisis.

Although I also have marked improvment from IV fluids it is doubtful I will find a Dr willing to place another line in me. I wish I could because Currently I pass out about 10-15 times a day. I had a J tube placed the end of last year which is my saving grace. I also have started using high alkaline ionized water which has been very helpful in maintaining a better fluid intake.

My friend with POTS was able to get it authorized through a cardiologist, she had failed drug options and had blood work that showed metabolism problems with drugs. They started out on a trial basis and she is seeing significant improvment.

Hope you figure it out quickly with less ER visits.

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This thread might help you: http://forums.dinet.org/index.php?/topic/27098-cant-get-dr-to-give-iv-fluids-help/

I think someone posted an article there that might be helpful to show your doctors. I also posted a response as well, so I'll try not to repeat that here. But basically, I myself find IV fluids extremely helpful. However, there are very, very serious risks with PICC lines or ports - lethal sepsis (bloodborne) infections are actually common with these types of lines, so I think for most doctors, IV fluids are the last resort, after everything else under the sun has been tried, due to the risks. Some doctors won't prescribe them at all, no matter what.

Have you been on the usual blood volume boosting medications, like Florinef? Florinef helps you retain fluids and salt. There are other drugs that can boost your blood volume similar to IVs. Also, have you tried drinking an oral rehydration solution (instead of sports drinks or just increasing salt intake) like Pedialyte? Most doctors won't even consider IV fluids until you've failed oral rehydration solutions, Florinef, and/or other similar drugs. In order to get IV fluids, I first had to try Florinef (which I failed), tried and failed 15 other POTS meds, and had to prove that I was not able to hold on to fluids orally (my urine tests showed really dilute, abnormally large amounts of urine passed, low blood volume on 24 hour urine sodium tests). Also, I'd been ending up in the ER regularly for a year and a half before they decided they'd exhausted all other options, my hydration issues weren't going to go away, and I needed the fluids. And after all that, it was my GP (not my POTS doc) who ordered the fluids :)

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For over a year, I've been in IV fluids every other day. I'm fortunate that I never had any infections with my PICC lines (have had one in each arm, I now have a medi port placed and accessed ), and my doctor has been very supportive in using this as a therapy for me. I am also on a 0.1 dose twice a day of Florinef with this.

the biggest drawback for me, is I benefit from the runtime being slow, such as over 8hours. I get ivs in the ER, run at their fast "get her out" rate, and within 15 minutes, it's flat out all in my kidneys. Slower run time, I can benefit from the dose of sodium it gives me, since I cannot take salt in my stomach (lovely EDS affects my gi system too), and if I try to drink my daily intake of fluids, which is 3-5 liters, I cannot eat either. IV days I get a little bit of a break, I can focus on solids and swallowing. I also get 9,000mgs of sodium in one run, I'm all for that. With the slow runtime, I am currently not able to leave my place,nor really do much, since I'm dragging a IV pole around and I'm already in a wheelchair. I've talked with my pharmacy today, and we are pushing for doctors approval for a Curlin pump, which will let me place my liter in a backpack with an electronic pump, free up my hands for other works.

Without my fluids, I'm useless. I wish I was able to run a liter everyday even, especially in my worse flare ups. But I've inly been in the hospital for my POTS twice since I began this at home, compared to the every other week ER and 12 other hospital stays. I think that is success.

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