Roselover Posted November 1, 2005 Report Share Posted November 1, 2005 Hi,Haven't posted much because I'm down deep in the POTS hole. I do read and miss communicating with you all very much.I was wondering if any of you have IV treatement at home and if so how did you go about getting it worked out? How does it work for you and what do you get?I have already had two trips to the hospital where all they did for me was IV saline and IV Zofran and IV pain reliever. I have a standing order for IV saline at a local IV therapie unit, but a quick bag of IV doesn't seem to help me as much as several days of slow drip IV. Also, the zofran works better IV. But I'd rather do this at home rather than staying at the hospital.I just thought I'd ask the question because then I have some info to help my doctor. She doesn't know much about this, but is willing to learn so I ofter tell her about what I've learned from others on the forum. Thanks for you input.~Roselover Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted November 1, 2005 Report Share Posted November 1, 2005 I don't have an answer for you, I'm just letting you know I am eagerly waiting responses. When I am in a 'crash' I can spend months on end in bed not being able to get up. The IV drips really help, but it's not worth it to me to spend 12 hours in the ER with all of the germs and chaos and then feel good for one day after the drip, and spend a few days recovering from the stress of the ER! So I would love to know about people that have IV access at home. HOW do you do it yourself? I mean, I surely can't believe that people are putting them in themselves. Do you have a permanent needle in there? Oohh that would make me sick (I have a really weak stomach when it comes to that stuff). Looking forward to responses..... Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 1, 2005 Report Share Posted November 1, 2005 I have a port-a-cath which is a permanent cathether that was surgically implanted in my chest. Home health came to our home and taught my husband how to put in the needle which is a much thinner needle than with other types of ivs. The needle must be changed at least once a week and my husband does this for me. I hook myself up everyday. There is an adapter that attaches to the end of the needle (which is covered and taped to my chest). To this adapter I hook the iv cord. The needle cannot get wet so if I want to shower I must wrap it heavily in plastic or remove it and have my husband put in another needle after I shower or swim. For this reason, I take more tub baths becasue I can keep the needle from getting wet and don't have to take such precautions. My supplies are sent to me weekly from an infusion company. They send everything I need and a nurse calls me weekly. Initially, I received home health visits weekly but only until we could insert the needle ourselves then we were on our own. The port-a-cath is not pretty but I have gotten used to it and even appreciate the fact that sometimes people can see it because it makes our illness less invisible. This has without a doubt been the most beneficial tx for me because of the severity of my sxs I require iv tx daily 1-2 liters. When I'm sick I just keep hooking up. This is with my doctor's consent. So, while this is not what most people with dysautonomia require it is what I require to have any degree of normalcy to my life. It has been a huge blessing. Hope this info helps.Carmen Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted November 2, 2005 Report Share Posted November 2, 2005 thanks for sharing exactly how that works. that is really interesting. i know i totally would have considered that when i first fell ill, but my docs were very hesitant to do that to a 13 year old, i guess. i'm so glad that works for you and provides you with such help and relief, that is really a great thing that you have set up there! a big improvement over going to the hospital so often for a hookup!thanks again for sharing and explaining it all. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 2, 2005 Report Share Posted November 2, 2005 Hi Roselover,I miss you! I had IVs at home after my surgery...I thought it would be way more convenient, but it wasn't in the end.They sent me the supplies, a home care nurse came to change the dressings, and someone had to be here (a parent) to hook me up and unhook me for treatment. I had a PICC line, and it gave me a lot of problems...and after I had it removed I had soreness for MONTHS afterwards...so I don't think I will be doing that again!I was getting IVs every other day, 2 liters over 2 hours, IV saline.I am wondering about those of you who do better with a slow drip? Can you tell me how long of a period you do it over? When I get the 2 liters over two hours I feel worse I think...I just feel like I am drowning. My BP actually seems to go down not up! What's up with that? Still, I do them in emergencies...I don't know if this helps one bit!But, I'm thinking of you...Emily Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 2, 2005 Report Share Posted November 2, 2005 Hi,I get 1L between 1 hour and 5 hours. It depends how fast the hospital wants me out. If it's too slow it does not work. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted November 2, 2005 Report Share Posted November 2, 2005 I have been getting IV at Home for about a year now. I had it set up by contacting my local hospital who gave me the name of a couple home infusion companies. They just needed a script from my treating POTS Dr, and it was all set.It has REALLY saved me in the past year. I ad a stomache vorus this summer that would of landed me in the ER on Fluids, But the beauty of this is you just make a phone call, and they come, put your line in, and they teach you how to start your IV..which is a piece of cake!I am very lucky that my insurance covers 100%.... I am not sure how it works with other isnurance companies though.Anyway I highly recommend doing it if you can b/c it saves SO much angst having to sit in an ER and go through your whole saga to an ER Dr that is looking blankly at you like you need to be commited Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted November 2, 2005 Report Share Posted November 2, 2005 I forgot to add that I have a regular Hepp line put in, which stays in for me very well...... I never went the PICC route. I also infuse over a long period of time b.c that is what helps me .....if I tried to infuse it fast I would end up peeing it all out along with my sodium which would not be good. I do a Liter in about 8 to 12 hour drips.... That way I hold on to the fluids and it makes a big difference. Quote Link to comment Share on other sites More sharing options...
Gena Posted November 2, 2005 Report Share Posted November 2, 2005 Jenn,What is a hepp line? And does it stay in permanently? Where is it located...on your arm? I am not familiar with these things, so please enlighten me. Thanks! Gena Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 2, 2005 Report Share Posted November 2, 2005 I don't, though I know of several who do- I'm starting to think it's a great idea, since I can't seem to retain water when drinking it.. in one way and out the other. Definitely interested in this topic, especially if there are non-Americans getting it done and through what body. (FX in England!) Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted November 2, 2005 Report Share Posted November 2, 2005 Hi Gena - a Hepp line is also called a Peripheral line...its just a regular IV temperary line like you would get if you went to the ER....It can stay in for up to a week as long as it flushes well and looks ok..... I MUCH prefer that to a PICC... Although if I was getting IV's on a regular basis then a PICC might be the better option. Quote Link to comment Share on other sites More sharing options...
wareagle Posted November 2, 2005 Report Share Posted November 2, 2005 Apparently you can also use a medaport. A nurse told me this is a disk that is inserted under the skin (minor surgical procedure) and when you need an IV you simply insert the needle. I haven't tried IV fluid yet..my insurance does not cover home visits..I'd really like to try them though and see if it would help! Quote Link to comment Share on other sites More sharing options...
Roselover Posted November 2, 2005 Author Report Share Posted November 2, 2005 Thank you everyone so much for all this info - it is really really helpful.Dancing Light - i have the same problem. When they give me two liters in two hours I feel flooded, then I pee all night and don't feel any better in the morning. When I've been admitted to the hospital, I ususally feel better in a day or two with going through 2-3 bags in 24 hours! That's why I thought doing it at home might help. I see Dr. Grubb in January, maybe he can help with this and answer the question about why the slow long term helps more than the quick fluids.I got one bag in an hour yesterday with Zofran and I felt a little better afterward and a little better this morning - although that's not saying a lot. I've begun to lose weight again.I am going to Mayo for motility specialists in two weeks. Apparently they work closely with the autonomic specialists. Keep me in your prayers.Love Roselover Quote Link to comment Share on other sites More sharing options...
corina Posted November 2, 2005 Report Share Posted November 2, 2005 Hi Roselover,I'm so glad to hear from you again, although I'm sorry that you're doing bad! I have never tried IV's before (except after surgery) but I would like to try it. My neuro asked me if I could drink . . . guess you know what he meant with that. But I do think it makes a difference, because I seem to loose more than I drink. It's so difficult when doctor's don't know enough about dysautonomia. Wishing you the best,Corina Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 2, 2005 Report Share Posted November 2, 2005 Hi Gena - a Hepp line is also called a Peripheral line...its just a regular IV temperary line like you would get if you went to the ER....It can stay in for up to a week as long as it flushes well and looks ok..... I MUCH prefer that to a PICC... Although if I was getting IV's on a regular basis then a PICC might be the better option.<{POST_SNAPBACK}>I don't like the ones with the saline locks, myself- they only last for a couple of hours before they stop working, and then they have to put in a new one! But then, I've never had a PICC line or Port-a-Cath or anything else Quote Link to comment Share on other sites More sharing options...
DawnA Posted November 3, 2005 Report Share Posted November 3, 2005 This is very interesting. i was wondering about IV access for those who do it at home. I ask my Dr if I could have IVs at home and she said no because insurance would not cover it. I am feeling good right now...but their are times that I would be so much more functional if I could have saline on a regular basis. I am hoping the dr I am seeing in Boston will push for this.Dawn ANich Quote Link to comment Share on other sites More sharing options...
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