Pistol Posted September 1, 2018 Report Share Posted September 1, 2018 Hi - I am scheduled for a port insertion next week so I can get my saline infusions at home. Usually I do not tolerate boluses ( BP goes up ) but if I get LR at a rate of 125 - 150 ml/hr I improve rapidly. We have tried weekly infusions but I still get flares and need to go to ER or hospital for additional fluids. To all of you who are on scheduled infusions for POTS - what is your schedule? And do you get them regularly scheduled or as needed? -- Thank you in advance for answers😊 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted September 1, 2018 Report Share Posted September 1, 2018 I'm written for 1500mL 3 times per week or as needed. Sometimes we try to leave the access in and do two days in a row. No one minds if I do it daily or every two weeks, so I decide based on how bad I'm feeling and if I can actually be hooked up for a few hours. If I know I will be having a rough patch, need to be at my best, or have been unstable, I'll do fluids anyway... and I did them on a schedule at first, for a few months. I definitely did better, but between logistics and wanting or save my veins (plus $30 a pop copay) I decided to save it for when I really need it. Just knowing it's there is very nice. Â Will you have someone come to access the port, say, weekly? I'm happy for you, having this option at home! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 1, 2018 Author Report Share Posted September 1, 2018 @RecipeForDisaster - yes, I AM SO EXCITED myself! Thank you for responding. I have been begging my PCP for over 2 years for a port and home infusions but he was so reluctant, trying to protect me from having one ( yes - there are actually caring docs out there - I am so lucky! ). But finally my ER and hospital visits just got out of hand. plus I had phlebitis 4 times. I am just as tickled as could be because I will now be able to get fluids whenever I START feeling bad, instead of having to wait to actually start passing out or taking seizures! And yes - there will be a nurse coming to access the port for the fluids and the next day someone else will come and take it out. --- I am just really happy about this, I will gain some independence back and can be in charge at least a little bit. So many people do not understand that we loose the ability to do what we WANT or NEED to do to live out lives. If I see someone just standing ( like a check-out person ) I always think: I wonder if they even appreciate the ability to do that! --- I envision myself being able to get over a simple cold or maybe taking a trip to the mall with my daughter ( in a wheel chair ) without having to go to hospital for seizures and having to crawl instead of walking! Because now I can get fluids either to avoid a flare or to fix one! --- Do you not have a port? My surgeon that is putting it in said that anytime you need frequent IV's you are eligible for a port. I wish you could get them more often, being that you did good on weekly infusions. ----Â Â Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted September 1, 2018 Report Share Posted September 1, 2018 I was originally started with 1 liter x 3 a week. Right now I'm running 1 liter a day, partly because I'm not getting enough in through my feeding tube. Nurse comes out to access me once a week and my family changes out the bags for me. Goal is to get back to 3 x a week as soon as possible so I'm not accessed 24/7 which puts me at greater risk of infection. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted September 2, 2018 Report Share Posted September 2, 2018 I can't have a port or a PICC but for most people, those are the best answers. If things got really bad, maybe a port someday, but the risk outweighs the benefit right now.  The port can stay accessed for days if that's better, just so you know.  Literally knowing I can get almost instant BP elevation that always works and gets me out of trouble is major peace of mind. I fought hard for it! I used to resign myself to 5 day stretches of not eating, barely being able to get off the floor, crumpling, passing out... thank goodness I never have it let it get that bad now. I do have to wait for my husband (RN) to get home from work sometimes but I find I can usually make it. If I'm getting bad I usually do fluids early. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted September 2, 2018 Report Share Posted September 2, 2018 Congratulations on getting approved for a port!!!! I an so envious, the UK NHS doesn't believe in giving POTS patients IV fluids at all. I hope it goes smoothly for you and becomes your new best friend! B x Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 2, 2018 Author Report Share Posted September 2, 2018 @bombsh3ll - thank you so much! I will let everybody know if I am improving. Right now I can feel when I start getting bad but I have to wait until I actually show symptoms before I can get fluids. With the port this will all change - I will be able to be pro-active!! I give you an example: when I get bad I start with the usual: dizziness, PVC's, fatigue AND feeling hyper, cold extremities etc. If I let it go I will go all the way to having to crawl, taking seizures or passing out, high BP. fast HR … As soon as I get fluids ALL OF THAT goes away. The ER of course does not feel any emergency from any of that because it is not a new symptom. But NOW - with the port and home infusions - I can get fluids as soon as I know that I need them, I can cut the malfunction off right at the start! --- I am sorry that the UK does not approve of IV fluid therapy for refractory POTS. Many docs here do not either - they feel that if you can drink you do not need fluids. But what they do not get is that in POTS it is not necessarily hypovolemia - in my case the fluids re-establish a pressure within the vascular system that my body is unable to create on it's own. It is more of a vascular pressure thing rather than a hydration issue. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 27, 2018 Author Report Share Posted September 27, 2018 So - I got my port 2 weeks ago and am good to go. Home Health is arranged, my supplies and fluids are coming in the mail today and then next week I will get a bag over 5 hours once a week and more if I am in a flare. I am so happy and excited. I was in the hospital over night for fluids again last week and I am so relieved that I may never have to go back now! I already feel so much less anxiety because I will be able to get fluids as soon as I need them - what a reiief!!!!! I have been needing 24 hour fluids every 6 to 8 weeks for the past several years. I am curious if I will have to go to the hospital at all now. I will update on that in 3 months time!!!!! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted September 27, 2018 Report Share Posted September 27, 2018 Congratulations I am so pleased for you! Do update how it goes. A port and fluids as needed is my absolute dream! B x Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted September 28, 2018 Report Share Posted September 28, 2018 That's wonderful, I'm so happy for you. I know just having bags available is a major confidence booster. I know I will be able to get better at home! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 28, 2018 Author Report Share Posted September 28, 2018 Thank you all for your compassion and I appreciate your responses!!!!! Quote Link to comment Share on other sites More sharing options...
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