surfgirl14 Posted January 15, 2012 Report Share Posted January 15, 2012 Hey guys. So I am really wanting to start being able to do IV fluids on a regular basis. I body is really weak and feels like it is just shutting down. My doc is always upping the dossages on my meds but my body just keeps getting used to it and rejects them meds now and not to mention I have horrible side effects from them. I asked him about doing IV fluids at my last appt and he said that he was willing to let me do them (he has other patients that do IV fluids) but he was hesitant .... he told me he was going to up my meds to 5mg and then to 10mg if tht was not working. I am currently at 5mg but i really dnt wnt him to up it to 10mg i just want him to let me do the IV fluids. I have proof tht they work for me and they greatly improve the quaility of my life.I know some ppl on here do the IV fluids. Could somoene please tell me how they got them , how they persauded their doctor? I am really desperate.... I really want to do them on a regular basis. My mom is hesitant to it too , although she is going to ask the doctor tomm if I can have a IV fluid session to get me up and running again that is not enough for me. I am really sick of doing trails of the fluids , I just want to start them as a treatment on a regular basis. Any tips on how to get the doctor to let me do it? Any info or tips will be greatly appreciated.Sorry about the lengethiness of this Quote Link to comment Share on other sites More sharing options...
aunie Posted January 15, 2012 Report Share Posted January 15, 2012 My doctor let's me do them as needed. I don't do them on a regular schedule but I can have them whenever I am not feeling well. We set them up through a home health agency and a local pharmacy. The pharmacy brings me the fluid and all the supplies and I just keep them here at home. Then I call the agency when I need some and they come start an IV and start the first bag. I hook up the second or however many we are doing and then when I am done I flush it. If I am feeling super sick and I think I may need more in the next few days I leave the IV in and just flush it morning and night to keep the line clear. If the IV is going bad or hurting a lot, I pull it. I worked in a hospital for eight years so I know the proper way to do these things, but your nurse can teach you and after time you can do them on your own as well. The problem with having fluids is that your veins get abused. I have scar tissue in a few of my veins in my left arm and it makes it really painful. I don't have alot of good veins either. A picc or a cath line is too big of a source of infection for me. I'm allergic to most anti-biotics so getting an infection would be really bad. I actually had two IV's put in this last week for fluids and I have four different sites where they tried to get a line and failed. It's a pain over time, the wear and tear on your veins from all the IV's, but it does make you feel better for awhile. I am allergic to most meds, so I don't take any POTS meds, so this is all I have for treatment. I use them every time I get sick with a bug, or when I am on my period, or just whenever I am super potsy.You could try to talk your doctor into it like the way I do it. See if he will order them on an as needed basis for when you are at your worst, maybe after awhile he wouldn't mind upping them to a more scheduled basis. He might feel more comfortable with that. Hope that helps a little. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 15, 2012 Report Share Posted January 15, 2012 My mom got her Port through Mayo.. she had a PICC before though. She does 1 to 2 bags a day and the nurse changes out her line once a week... but there are some serious things that can happen.Last month she had seizures she never had before then all of a sudden spiked a temp of 104.. turns out her line was infected. Its less common with Ports, but it can def. still happen. Then she ended up with a blood clot where the old line used to be and is now doing blood thinning shots for the next 20 days.It does really help her though.. but even if you take great care of it (she does) you can still end up needing it pulled, and once its pulled, they will take forever to put another back in I am currently trying to get one, but I dont plan on having it long term. There are too many risks with it to have it for years on end. The longest one for her lasted 14 months... 19 months is about an average life of one. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted January 15, 2012 Report Share Posted January 15, 2012 Are you girls talking about just plain saline fluids? My doc has a standing order for me for IV therapy whenever I want it, but it's saline + magnesium. Have been considering it since I've been in a hole lately... Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 15, 2012 Report Share Posted January 15, 2012 They can do both if you want/need it. But its hard to persuade doctors to get them to do a PICC/Port. My mom got it because she also has a lot of other health issues with her POTS. Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted January 16, 2012 Author Report Share Posted January 16, 2012 Yea I am looking to just get plain saline unless my doc thinks that he wants to add others to it like (potassium) ... He has said he will let me do it if I am not improving but is hesitant. I am planning on asking this week and if I don't get a response ima ask at my next appt on the 2nd of Feb but i dnt wana wait tht long .... When we were discussing it though he had mentioned a port. He works with many POTS patients around my age and he has patients who do the IV saline therapy and I think some have ports as well. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 16, 2012 Report Share Posted January 16, 2012 it definately helps short term. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 16, 2012 Report Share Posted January 16, 2012 Have you seen an integrative or functional doctor ? Saline iv's will only help some people short term whereasthis kind of doctor will look for a cause. Many of us have food intolerances, esp gluten. Celiacdisease is associated with damage to our solute transporters which would cause dehydration. Fwiw, I've never had more than one bag at a time, but these have never helped me feel better and yet I have chronic dehydration. Even 5 meyer's cocktails in saline didn't help my dysautonomia / ohAnd pots. Ormy energy .. Tc .. D Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted January 16, 2012 Report Share Posted January 16, 2012 Through my many trips to the hospital and being hooked up to a iv. I saw the iv gave some help with symptoms. So I started talking to some of my Doctors about a PIC line. I had 2 Doctors agree that this could be helpful. But my primary care wanted to use the port a cath because of the lower chance of infection plus less trips to the hospital.(Doctors wont let me drive) The port is good for 5000 needle changes but the pic needs to be changed I think monthly with use of ultrasound for placement. So my advise is to keep on your doctor about how helpful the Iv is for you and pretty much pressure them into it. I've been using my Port for daily Saline use for a year now and I just want to tell you that even though it's been helpful with the syncope it doesn't really help with all symptoms of POTS. Also a negative to the bags is I do mine at 250ml drip which is the max for my age. So it takes 4 hours per bag. So it seems to feel a little better I spend more time in bed. Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted January 16, 2012 Author Report Share Posted January 16, 2012 oh ok. well I have local childrens hospital that said they will accept me as a patient to do infusions. We are waiting to hear back from my doc Quote Link to comment Share on other sites More sharing options...
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