houswoea Posted January 20, 2011 Report Share Posted January 20, 2011 yeah, I'm going to post two questions... don't be mad! :-P No one else seems to know!Okay, so I finally got a prescription for IV saline... but it's kind of a "whenever I want" type of deal. And I was wondering how much would be prudent? How much do you guys normally get IV therapy? I'm thinking once a week might be good... but if it's super expensive I may only want it every other week? Or maybe only when I can't move without passing out?My doc said he hadn't heard of this treatment, but called another guy who said it would be fine. so basically he didn't know.Ps, I have rockin insurance, so that will help. Quote Link to comment Share on other sites More sharing options...
PotsMom Posted January 20, 2011 Report Share Posted January 20, 2011 We are also looking at possibly using this for our son. When seeing a physician out of state at two different visits he was given IV saline in the office. It was amazing to see how it helped him - it was like watching a flower bloom in front of my eyes. For a short time he had significantly more energy and interestingly also immediately wanted to eat - which is something he rarely wants to do early in the day. The downside was that the benefit lasted at most two to three hours. This is something I've been exploring for a while so have done some reading regarding other's experiences, etc. As with everything, it doesn't work for all that have tried it, but for those it helps it often seems that doing the infusions more often seems to help more, e.g. two to three times per week. That of course can become a problem with the veins over time, and many who find it beneficial go the extra step and get a port or picc line for ongoing infusions. That then comes with risk of infection. The first step, though, is obviously to find out if it works for you in the first place. If you have great insurance, that is a big key!!! I have been doing a lot of research lately as to cost, and it does not come cheap. The estimates I have been given for infusions of two liters over two to three hours is in the $400 to $500 range. Since we have an extremely high deductible, that cost is essentially out of pocket for us. This is at infusion centers. I am currently looking for a doctor's office where they do infusions as I think it would be more affordable in that kind of setting, but I have yet to find one in our area. If anyone has any thoughts on where to search for finding such, please do share. Quote Link to comment Share on other sites More sharing options...
houswoea Posted January 21, 2011 Author Report Share Posted January 21, 2011 Interesting... the place that will do it for me is a "chronic care clinic"... attached to an urgent care place and a family medicine clinic. Hmmm... this is all so confusing. You would think salt water wouldn't be that expensive. Quote Link to comment Share on other sites More sharing options...
autumn Posted January 22, 2011 Report Share Posted January 22, 2011 I get it once a week, but my doctor wants me to increase to twice. I have a home health care nurse come and hook me up, and the liter bag runs over six hours, though the nurse is going to try to persuade the doctor to change that to four, which is the fastest it can be administered because of the potassium in the solution. My doctor's other patients have increased over time and are now on daily fluids, and they all have PICCs. I'm trying to put that off for as long as possible. I think the cost is about $167 each time. My deductible was met before I started last year, so I didn't have any out-of-pocket expense, but I haven't seen the bills yet from this year's sessions. The benefits last me a couple of days. Quote Link to comment Share on other sites More sharing options...
cary42891 Posted January 26, 2011 Report Share Posted January 26, 2011 I was in the hospital for almost a month this fall, and was given my first PICC in the hospital because IVs weren't working. I was getting 200 mL an hour for about a month and a half, then went down to 175 an hour for a week, then now I am at 125. We are trying to wean down to nothing, but I'm guessing I will end up getting a few liters a week in the long run. I went through a PICC in one week (it clotted and looked infected), then a mid-line in two weeks before getting my tunneled catheter in my chest. I get two 12 hour infusions a day, and my home nurse comes once a week to change the dressing and check my vitals. The high doses of fluids seemed to help, but now I'm not seeing as much of a difference. Most other POTS people I know just get a couple liters a week. Quote Link to comment Share on other sites More sharing options...
Elegiamore Posted February 3, 2011 Report Share Posted February 3, 2011 To make IVs affordable, you need to go to a oncology or infectious disease clinic and become a patient. Many of them have infusion centers are part of their office and they then bill the infusion to insurance via their doctor office as an inhouse treatment. MINE ARE FREE if done at doctor's office (I have Blue Cross BS).The oncologist said "what is your blood condition" and I said "hypovolemia and low blood red cell count" and that got me in the door. If I had said "I just need help with saline infusions" they would have hung up the phone. Also, I called the infectious disease physician where I have been treated for shingles and genital herpes for 10 years; he had seen the effects of POTS in me and other CFS patients - that got me into THEIR infusion center.It took about three months of IVs once a week for my blood volume to "catch up" sorta and feel the results. This helped me reduce my very high blood pressure and gave me more pep for about half the week. I then tried going two times a week and had great results in bp and syncope control However, all my veins gave out in only five months. I got a central line PORT instead of a PICC line, as PICCs have to be pulled out eventually and I will never had vein access again. Also note that if you use a PICC line or port, you will have to use heparin, a harsh drug with a high acidic balance that can flair up allergies. The vein access is the best if at all possible, IMHO.And remember you can gather up paperwork from important POTS doctors and then petition your insurance company to cover your IVs if you can't get that to happen. It took me five years and lots of hospitalizations to get them to cover it for me, the fools.Good luck Quote Link to comment Share on other sites More sharing options...
houswoea Posted February 5, 2011 Author Report Share Posted February 5, 2011 So I tried my best to figure out how to do this, and I think I finally did it.I have never, never had to figure out medical things before, or insurance, or anything like this... I'll get used to it I guess.I go every week to a family medicine clinic to see a nurse who hooks me up. It takes about an hour and a half and I get one liter. And my insurance pays 90%. So I get it every week. I can start getting twice a week if I want to, so we'll see how it goes! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted February 9, 2011 Report Share Posted February 9, 2011 My moms PICC line lasted over a year! Her secret was once a week using these patches that go over the site that has some type of medication to prevent infection.Also if you can get the portable IV bags so you can hook yourself up and not be tied down to an IV.However its a big pain in the butt to take showers and it has to be changed out weeklyGood luck! The problem with IVs are that they are not meant for a long term solution your veins will eventually give out. Quote Link to comment Share on other sites More sharing options...
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