Iv Fluids

[autumn]

My doctor started me on IV fluids last week, with a frequency of once a week for a month or so, and then we'll reassess. I had an infusion last week, and it really helped ... for about 48 hours. I crashed pretty hard after that, and the days have pretty much sucked since then. I get another infusion tomorrow morning, and if it makes a big difference again, I'm going to have to consider increasing the infusion frequencies.

My doctor wanted me to get a PICC right away, but I thought it seemed silly because I'd be getting fluids only once a week. I know that if we increase even to every two or three days, I'll need something more permanent. A PICC line scares me, but the home care nurse last week mentioned a port. I can't say I'm thrilled with either option, but the port seems less invasive in day-to-day life.

Does anyone here get IV fluids? Have a port or a PICC? I feel like there are such big decisions to be made, and I don't feel adequately educated. However, if I'm going to do this, it'd be best to handle it before the end of the year because of insurance issues.

[Sarah4444]

I'm sorry I can't help autumn, actually I am wondering if you can tell me whose idea it was to have IV fluids, and how you and your doctor decided to go this route. Had you tried any meds yet? How did they work? I am just wondering because I have seen some very slight improvement with meds but am still pretty disabled and housebound. I am wondering about trying IV fluids but none of my doctors have suggested this or even seem to know it is an option. I am not sure how to proceed.

[autumn]

Sarah, I'm newly diagnosed and haven't tried meds yet, other than verapamil to control my ventricular tachycardia. My doctor has three other patients with POTS, and they all do really well on IV fluids, so that's what my doctor wanted to try first. Frankly, I'm tired of medicine -- I'm on so much already -- and if I can get results with something else, I want to try it. Her other patients are on daily fluids and have permanent access to a vein, so they hook themselves up and infuse overnight. Because I have to have a nurse start a line on me each time right now, I infuse during the day. One liter is run over six hours. I've had hydration therapy only once, but it really did make a difference, especially in my fatigue level. Fatigue and sinus tachycardia are hands down my worst problems.

I think if you do a search for IV fluids on here, there are some threads that'll pop up. It seems people have had good results with the treatment.

[Rachel]

Hi Autumn,

I have been getting IV fluids for a couple of months now, and it has been helpful. I get them three times a week. I have home nursing care, and a nurse comes to my apartment three days a week and starts a new peripheral IV line each time. When we started the IV infusions we were hopeful that I would only need them for a couple of months. However, it looks like I may have to do IVs long term. If that is the case then I will probably get a permanent line. I really don't mind getting stuck with a new IV three times a week, but over time it causes scar tissue build up. Already I have times that my veins are sore and hard to get a line into. Sometimes I get stuck three or four times before a line can be placed (and I have an awesome nurse who is great at getting IV lins in).

A permanent line is not an option I like because of the risk of infection. There have been a few members here on DINET who had/have permanent lines and have ended up in the hospital with sepsis. Getting a permanent line definitely comes with risks, so weigh them carefully. If you are able to drink an adequate amount of water and gatorade, then taking in a lot of salt and/or Florinef may be a worthwhile, and less risky, option for you.

For me, IV fluids and a permanent line are a "last resort" for treatment. I would much rather take medicine, and in fact I do take several medications. But even with medicine my symptoms have progressed to the point that I have to be in bed for about 18 hours a day, and I have to rest most of the 6 hours that I am "up." And that is all with IV fluids. Without the fluids I do worse. Another reason I may have to get a permanent line is because of my gastroparesis. My water intake has been more than cut in half due to gastroparesis, and I can no longer salt and fluid load like I used to as part of my treatment.

If/when I do get a permanent line I think I will go with a port. A port can be completely de-accessed, and you can then get a shower once a week without having to carefully cover your line. The downside is that a port is put in and removed during surgery. Minor surgery, but surgery nonetheless. A PICC line doesn't require surgery, and it is more "temporary." It is a good option if you think you might only need it for a month or two.

These are big decisions. I hope that you are able to find the information you need as you make decisions about your treatment.

Rachel

[Rachel]

Hello again, Autumn. Here is an old topic that has been helpful to me as I have been weighing my options. Port Questions

Rachel

[autumn]

Thanks for all the information, Rachel. I certainly have a lot to consider.

Right now, a nurse comes once a week, and I infuse over six hours during the day, starting whenever the nurse can get there. I don't mind that right now, but if I have to increase the frequency of the infusions, I'll have to choose a more permanent access site. The nurses have told me that if I have a PICC or a port, I can hook myself up and infuse when it's convenient, likely overnight as my doctor's other patients do. I just don't have the time during the day to devote to having a nurse hook me up several times a week. I work afternoons and evenings, and it would really interfere; I've done a decent job of not appearing sick at work, and I really, really, really don't want to have to go in with an IV running. The nurses don't work when my shift is over, usually about midnight, so being able to hook myself up then would be the real perk.

I'm not going to rush into anything. My doctor called me today to say she got a fax from Boston saying my autonomic test results were borderline/abnormal, and from what I understood when I was at the lab, if my tests come back showing anything weird, I'll get in for an appointment much sooner than if they were normal. I want to hear what that doctor has to say before I jump into anything major. I'll probably keep with the weekly infusions for now because they really seem to help. Ideally, I'd have them at least twice a week -- I crash two or three days after the infusion -- but I don't know that my schedule will allow that right now.

[Rachel]

Autumn, would your doctor allow you to do your infusions a little faster? Maybe that could fit into your schedule better.

Currently I get one bag of saline over 2 1/2 hours. I use a Curlin pump, which I really like because it is so small. I put the pump and the bag of saline in a small black bag, and I can go anywhere with it. Usually I am just at home, but the small pump allows more flexibility with scheduling. I have been to doctor's appointments (and even to the zoo!) with my IV running. With a long sleeved shirt and the IV bag sitting next to me in my wheelchair, most people don't even know that I am hooked up to an IV.

There have been a couple of times that I have left a peripheral IV line in for a day or two, and then I would do one infusion by myself. This has allowed a little bit of flexibility when I needed it. It is a pain to get a shower with an IV line in, though. It has to be wrapped so carefully to keep it from getting wet.

Rachel

[autumn]

Thanks for the fast response, Rachel! I'll ask about a shorter infusion, even if it's one shorter and one longer each week. My pump is fairly small, and I have ventured out a bit with the IV in, but the range of motion in my arm or hand is usually limited, which would affect my work, driving, etc. The nurses seem to have trouble finding a good vein on me, and it often takes more than one try. I end up getting the line in my hand or the cubital vein, and my veins are "delicate" enough that I'm instructed not to move too much for fear of infiltration or other problems. The nurse today told me about leaving the line in, but she said it probably wouldn't last on me. If they could get one in my forearm, I'd be set.