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IV theraPY for hyperagrenergic POTS


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Hi - this is my first message. I am trying to convince my PCP to allow me to have a port for IV fluids. I need them often and need to travel one hour each time (one way). I have given him articles and a list of pros and cons but he still is not sure if the benefit outweighs the risk. I explained to him how much it would increase my quality of life (I cannot drive due to syncope, am disabled from POTS and getting fluids at home would give me some control over my symptoms). In addition when he is not in the office and I need fluids I have to go to the ER and many MD's there do not understand why I need fluids when I am not dehydrated and can drink. (Answer is my BP and HR normalize, syncope and seizures stop and I can actually walk!!!!) Does anyone have any advise on what else I can tell him?  Has anyone else been in this situation? I would really appreciate any comment. Thanks! 

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My PCP said he would order fluids at home when I needed them but I would have to come in first (each time). That obviously wouldn't work! One of my more aggressive doctors was willing to order them and I just tried my first bag a week ago (I had never even had them in an office or hospital ). I knew they would help but was surprised at all of the positive effects... I suddenly felt like I could eat, slept better than I ever do, was able to walk a lot further, was not nauseous, etc. etc. I was genuinely happier and I am usually pretty happy anyway even though I'm sick. 

 

I am lucky I sort of knew what I needed before I even tried it. This doctor agreed I should have it on hand, partly because my BP drops so much (I don't think I hyper).

 

I only had the one bag and it took a while to get set up with infusion services. I got my first delivery tonight and am just about to get my IV put in so I can feel better. It's been a rough week so I am very eager. I just use peripheral IVs each time which is not ideal, but I have a lot of risk factors against getting more permanent access. My veins are decent for now and I am going to try to keep it to 1-2 sticks per week.

 

One of my cardiologists also told me I didn't need IV fluids when I could drink. That is just so stupid. There is a massive difference between drinking even 4L of electrolyte solution, which never helped me, and just 1 liter of NS right into my vascular system. I don't pee it right out, either, for some reason (I do when I drink it). 

 

I wish you luck in getting this arranged... it was a lot of work, plus $30 copay per bag, but very worth it! Maybe your doctor would be more comfortable without the idea of the port, even though that is convenient. The company I use would normally start a peripheral IV once a week and leave it in, but my body would clot if off abnormally quickly. I also have my own nurse :)

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Does a port require you to have surgery?  Most doctors would try to resist this at all costs (unless there was no option) because of the risks of infection.  There are some treatments that will better help your body retain fluids (like laking salt pills or trying florinef).  Have you looked into them?

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Unfortunately I am treatment resistant. I am on a lot of meds for 8 years and can usually manage as long as I live within my (ever changing) limits. When my symptoms get triggered there is no real Alternative other than fluids. But yes - a port requires minor surgery and in addition may cause blood clots or infection anytime it is accessed, therefore the PCP's cautioned approach. However - I am aware of this and feel that my life would be so much easier to maintain a certain level of balance over if I could do IV fluids at home as soon as I can sense that I need them instead of waiting when I can get ahold of my PCP.   

 

 

 

 

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Check into an arrangement like mine where you get a peripheral IV when needed, or you could leave it in and flush it for up to a week or so. If you don't have a nurse of your own, the infusion company sets you up... might be a good compromise. PICCS are another option, not for me due to clot/infection risk, but no surgery and easy use any time.

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My local homecare needs a permanent access to do home infusions, they will not do sticks. I never looked into IV companies but I have a list of national IV suppliers covered by my insurance. I can check with them. Unfortunately I live in a very rural area so they probably don't come out here. I will check into a PICC line though, maybe my PCP would agree to that. Thanks!!!

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