RecipeForDisaster Posted January 16, 2018 Report Share Posted January 16, 2018 I'm surprised this has been so difficult to set up... my insurance set me up with Walgreens specialty/AllianceRx. It's been a week and no communication unless I initiate it, and no progress. First they said they'd call the doctor for the order, and they didn't.... then I had the doctor call THEM and they still say they don't have it. I have a paper copy but they can't accept a fax or email from a patient, so I have to send it from a doctors office tomorrow. I have good insurance. Does anyone have good experiences to report with getting these supplies (normal saline) sent to them? Any tips or tricks? I'm also wondering about what kind of IV catheters they will send, plus the other supplies. I want to make sure there is no learning curve and there are so many different ones. To be honest, no one I have spoken to there (3 people so far) has sounded very knowledgeable or caring. I really want to have at least an emergency bag in the house, and I used the only one I had. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 18, 2018 Report Share Posted January 18, 2018 I do hydration at home that is sent to me by mail through CVS Corum. I've had them mail to me in various states, from various branches. Though getting orders through has really been a pain, it has worked and been a life saver! If you want to continue by private message I can tell you the supplies I use, etc. (yes, getting the right catheters in the right gauge, etc has not always been smooth). Do you have a port? Doing peripheral lines? I'm working on getting orders etc transferred to a providence distributer... we'll see how that goes. So far, so good. Hope it works for you. Has been SO SO helpful to just run a litter at home over the last several years if I need to rather than relying on on an infusion centre. Hope it works out for you! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 18, 2018 Author Report Share Posted January 18, 2018 Thanks! I have not done hydration anywhere but at home. I was sort of surprised at how helpful it was, although by the next night it had mostly worn off. Definitely worth it. I have no port, just new peripheral IVs to be placed each time. I doubt I'll do it as often as 3x week PRN as ordered just because of logistics. After a week and literally about 10 hours on hold total, I managed to get a supervisor by being left on hold when the place CLOSED. She felt so bad and is helping me, saying the orders are fine and they just need to run a test claim today. We'll see, if it's this painful going forward I will be switching companies. Most of the time I cannot get a hold of anyone and have to hang up after an HOUR on hold. Ridiculous. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 19, 2018 Report Share Posted January 19, 2018 Oh my that sounds super frustrating. Just sent you a message, before I saw this note :-) Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 19, 2018 Author Report Share Posted January 19, 2018 Well I sure would not recommend that company! After about 14 total hours on hold (yes really) over 8 days, it turns out... they DON'T DO HYDRATION?!? Is there some special reason why no one could tell me that last week?! I'm starting with a local company that seems quick and caring. I have to get my husband's nursing skills signed off by them and then we should be set. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 20, 2018 Report Share Posted January 20, 2018 WHAT!!!!! Are you SERIOUS! I am so so sorry. Wonderful that your husband can do it for you!!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 20, 2018 Author Report Share Posted January 20, 2018 Delivery is coming this morning, thank goodness, because I am really in need... haven't slept in days as I seem to be getting a cold, feeling horrible. It's such a relief that I will have this on hand... $360 copay or no! The local company, although owned by a big national company, came through quickly. Don't bother with Walgreens specialty/Alliance Rx..l when I asked the supervisor if being on hold for over an hour every time I called was normally she said "unfortunately yes" who can deal with that?? And useless information if you are lucky enough to get a person. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 21, 2018 Report Share Posted January 21, 2018 yaaaaaay!!!! Did you get it? How you feeling? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 21, 2018 Author Report Share Posted January 21, 2018 So last week when I did the fluids it was magical. ... this time I think i was too far gone for it to help me as much. I would have liked to do a bag days earlier but didn't have them. My BP only came up 6mm (that isn't how I measure its usefulness, but it's interesting) and I did end up wanting to eat for the first time in 4-5 days, but I did not feel as improved as last time.. then, I think eating set me back somewhat. I think I needed more than a liter and wish I ran another bag in. I had trouble warming the bag enough so I got really cold too. Oh well! I'm looking forward to next time in a way. I expect it will usually make a big difference. i did run it over just under two hours this time, so maybe running it that fast is less helpful? I don't know, I was twice as sick when i started this infusion as the last one, which I ran over 3:15. I guess I'll go in between next time. Amusingly, it says to set rate control to 250-500 and it only goes up to 250 so you have to eye it. i did not have to pee for many hours and it was not much, so I don't think I "lost" the fluids. Four bags of supplies and an IV pole in my kitchen... I'm going to make an insulated bag to hang the fluids in with a rechargeable heating pad. I would love any other warming tips. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 23, 2018 Report Share Posted January 23, 2018 OOO!!!!!! It came!!! So sorry was not as helpful as last time, but ya, sure sounds like you were quite dehydrated. Glad you were able to eat some. Terrible isn't it. Sometimes I feel like I've gotta eat or everything is worse, but eating makes it worse... sigh. I'm pretty sure I would starve to death without cheese toast. Sooooo, I don't know that this is a 'good' way to do it, but in the third world, they nuke a bag in the microwave 1minute each side, and give it a good shake. Obviously the whole microwaving plastic around something I'm putting into veins is suboptimal, but it works and I've been known to do so when needed. Does the heating pack work? Hadn't thought of that. Good idea! Maybe I'll try it! Hey, question, you don't take desmopressin do you? Having some symptoms I'm trying to figure out with fluids/sodium, etc.... Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 23, 2018 Author Report Share Posted January 23, 2018 That's the weird thing, I really don't get dehydrated. Just hypotensive and low volume, I guess. I love the idea of microwaving but yeah, I'm afraid of chemicals leaching. I do that too, at times I HAVE TO EAT NOW OMG and feel like I will starve to death... although not for a while now. Other times I can go a week or more without caring to or being able to eat. I'll be getting another bag today so hopefully that will make me feel like eating again. I love to eat! Eating always makes me feel worse, though. i don't take desmopressin-endocrinologist cleared me but that was years ago and he no longer works... hmm... I'm not sure whether the heating pad did much... the first day, I ran the tubing over and under it, and I actually think that was more helpful than wrapping it to the bag. I'm still experimenting! My rechargeable heating pad is awesome. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 23, 2018 Report Share Posted January 23, 2018 I get fluids as needed at my local hospital. When I feel that I am getting bad I get one bag over 2 hours. If that's not good enough than I get 3 bags over 24 hours ( in hospital ) and that always does the trick. One bag lasts 48 hours. 3 bags help for a long time, sometimes weeks or even 2 months!!!! I crawl in like a pile of pity and come out like wonderwoman!!! -- I also notice that I pee a lot when I am bad and within the first 10 minutes of fluids it stops!!! also - normally IV fluids raise the BP in mormal people but with me it drops!! !60/98 before and 118/68 after bag 1! -- I heard of someone wrapping the bag in an electric heating pad and then sticking it in an insulated bag and hanging it bottom-up on the pole, apparently that works but I haven't tried it. Best of luck!!!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 23, 2018 Author Report Share Posted January 23, 2018 That's funny, that's just about what I did today. Heating pad in a silver bubble wrap insulated envelope with the fluid bag... it helped but not nearly enough, I still got very chilled (and also the IV hurt a ton today for some reason) . The most helpful and least practical way I have found is to put a heating pad on my arm above the IV site and also run the tubing under it. It makes me immobile, though... I would love for the whole bag to be warm someday! i did 1500mL today over 3 hours. After a liter bag I just wasn't better enough and my BP was still low. The extra 500mL definitely helped! I am better and grateful, planning to eat dinner. I'm hoping to get 48 hours out of it since I got 36 hours the last time a liter helped. Quote Link to comment Share on other sites More sharing options...
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