Becia Posted February 4, 2014 Report Share Posted February 4, 2014 After some of the swallowing issues and hydration issues I've been enduring since about October last year, i am looking into doing some Iv therapy at home. I thought I saw a post about it around here somewhere, but somehow having issues searching, so here I am asking for people's feedback on this. Who did the order for this, how did you complete this (port insertion, therapy center, etc), and how much fluid did you need during the week or so to be beneficial?My family and I agree that I seem to do so much better when I am able to get some Iv hydration in me, and this last hospital visit I've had lactate ringers for the entire time to get some electrolytes in me, and I feel a world different. After having a swallow study done here as well, it's been informed for me I need to work on getting solid foods in me (or semi solid), to keep my digestive tracts functioning better, but the argument I always have about having to drink so much I don't get hungry, or I end up throwing up everything because I have no room for food and my body freaks out and goes into reverse. They mentioned that maybe getting some hydration this way, I can focus on trying to eat. I can do ensure and boost for nutrients, but I apparently need the stimulation of actual food too to keep my system going. And frankly, I am really craving pizza, lol.So this looks to be an avenue to try. So, thoughts, ideas? Quote Link to comment Share on other sites More sharing options...
corina Posted February 4, 2014 Report Share Posted February 4, 2014 Hi Becia, I did a search for you and think this is a good topic on it:http://forums.dinet.org/index.php?/topic/22183-in-home-ivs-in-a-small-town/?hl=%2Biv+%2Btherapy+%2Bat+%2Bhome#entry207012Hope it helps answer your questions! Quote Link to comment Share on other sites More sharing options...
Becia Posted February 4, 2014 Author Report Share Posted February 4, 2014 Awesome, thanks so much! I was having just way too many issues last night, and nothing was working right, lol. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 4, 2014 Report Share Posted February 4, 2014 Becia,My son did IV Saline therapy at home in 2012. His neurologist, who treats his POTS, ordered it for me after I requested it. A nurse came to our house on a Monday, started the IV and showed me how to disconnect and restart a new bag, etc.. He did one liter a day for 5 days. It was at a point where he was really ill and unable to get out of bed. At the end of the week, while not feeling great, he was feeling better than he had been. I requested it because at the end of that week we had to travel 13 hours from home to take him to Dr Afrin in South Carolina and was afraid the trip would be way too much for him. He was able to make the trip, I think, because of the IV Saline therapy.Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Report Share Posted February 6, 2014 Just be careful that you get the correct amount from a doctor. You can easily overload on IV fluid and cause pulmonary edema. Not good.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 6, 2014 Report Share Posted February 6, 2014 Just be careful that you get the correct amount from a doctor. You can easily overload on IV fluid and cause pulmonary edema. Not good.JuneVery true, especially in a normal patient population. With so many POTS patients having documented low blood volume it's probably less likely to happen with them, but still needs to be monitored by their physicians. Personally a liter 3x a week was a big help for me. Just got too expensive and takes over your life when you have to go to the infusion center that often. Over time it seemed to lose some of it's benefit, so now I find it more helpful if I do it for a couple weeks at a time and then give it a break. For others getting it every day is a miracle cure. Hopefully Becia, you'll find a good solution as you work with your docs. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 6, 2014 Author Report Share Posted February 6, 2014 Yeah, I talked to a home health nurse yesterday and was mentioning that this was one type of treatment, and she was just floored that anyone would chose it. My thought was if I could not fill up on fluids and eat, that would be the bonus, so why not? I don't like needles, but I will use them if it helps me.Even my friend who sat in on the visit had to constantly explain that I'm always drinking, and even to no fault if my own, it seemed I never was hydrated enought. "Well, only 6-8 glasses a day will do it," was her response, then we had to start the pots education, which I knew I was gonna have to do anyways, but it just amazed this woman the level of hydration we need. Then she said "oh, I'm sure your doctor isn't going to feel comfortable with that idea." Lady, let him make that decision? M'kay?I just know my body, like all of us do. Time to fight for some therapies that work, instead of end me up in a hospital for a few days, just to fail back at home.Thanks for your info! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 6, 2014 Report Share Posted February 6, 2014 http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/I think this has been posted before, but here is the link to article about it. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Report Share Posted February 6, 2014 My daughter's doctor always stresses that she should drink salted fluids, not really water. Gatorade is good and soup. Maybe IVF would help too but I have no idea where I would get that for her. June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 6, 2014 Report Share Posted February 6, 2014 I requested the treatment from our local neurologist who is now in charge of my son's POTS. He is always open to my suggestions and his office set it up for us. He told me that was a 'reasonable' request to try. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 6, 2014 Author Report Share Posted February 6, 2014 My doctor just wanted/wants me constantly drinking. Water, Gatorade, broth, salty, anything not caffeinated is fair game, just keep pounding it down. And even with doing this, I still do not seem to get enough. But if this will boost me enough to do things around the house, or visit family for a bit, I'm all for it. I'm getting tired of fighting my body to either drink or eat, I cannot do both. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted February 8, 2014 Report Share Posted February 8, 2014 I find IV saline quite useful when I can't seem to drink enough to stay hydrated - since beginning plasma exchanges, the need for IV saline has dramatically decreased. I do receive 1-2 liters of saline during the exchange which I now take once a month. It takes about a day and a half to recover from the plasma exchange due to low BP and dehydration and if I could keep the saline going after the exchange for 24 hours, I think I would perk up faster. The problem with regular IV infusions is the IV access for the infusions. If you have a port inserted, you really need an IV pump to put the fluids on and you have to be well-trained in sterile technique for access and de-access of the port otherwise, you can end up with a central line infection which is life-threatening. I had a port for 6 years AND an external central line for 3 years then became septic with blood infections - real battle.- had to have them both removed. I now have a "necklace" graft and although the MD has instructed me on how to access the graft, I am not keen on doing so. It is a dialysis graft that is better accessed by someone other than myself. I don't want to risk central infections anymore - too dangerous. Peripheral IV's are OK but, over time, your peripheral venous access dwindles and becomes harder and harder to obtain. So, if you can keep hydrated orally, it is much easier on your system. If you are in crisis, then an IV is probably the answer. If you and your MD decide on regular infusions, you will have to have a honest discussion about the best way to maintain IV access. Quote Link to comment Share on other sites More sharing options...
Becia Posted February 8, 2014 Author Report Share Posted February 8, 2014 Yeah, weve been having that discussion about access here at the house, and im fairly confident i can handle either. I worked in a hospital and dealt with the ports and PICCs of my friends and families when they've had them. While im not totally enthusiastic about having to go to this route, I just know that it helped me so much, and always does, and with my swallowing issues, this is something at the forefront of helping me.appointment next tuesday to discuss this and get the ball rolling. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 16, 2014 Report Share Posted November 16, 2014 I use iv therapy in a pinch... It helps curb crashes. (If I'm nauseated or sick or it's hot and humid.)Also I've learned when I don't need it and to trust my body. If you are hydrated and receive it... You feel worse. Just my opinion. Sometimes I only get half a bag has been helpful before monthly cycles Quote Link to comment Share on other sites More sharing options...
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