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Im planning to do my own IVs and buy saline from ebay

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by taniaaust1, Jun 25, 2014.

  1. taniaaust1

    taniaaust1 Senior Member

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    Someone suggested to me that I should try some different drugs.. and get them from one of the online places in which doesnt ask for prescription. As a have bad reactions to so many drugs (cause of all my detox gene mutations), the idea of doing that wiithout a doctor is scary (far more scary then trying to do an saline IV if there is a way).

    But seeing it takes more then one hand to do the IV (unless it can be done elsewhere on the body??? does anyone know? Can I do it around a foot or something??? I remember in the ICU one time when I was covered in tubes, they had a tube going into foot (top of foot?).. cant quite remember where thou, I was quite out of it.. they ended doing a port on that occassion which I had for a week) . It looks like my only options for improvement with this would be to find some drug addict and get him/her to help me with IVs and pay them (no normal other person would probably help with this) or start doing prescription drug trials myself without a doctor (which scares me).

    I need to do something.
    Last edited: Jun 26, 2014
  2. taniaaust1

    taniaaust1 Senior Member

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    http://enw.org/IVStarts.htm

    Maybe I could do this if I could find the thigh vein.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    does your doc not want to help you out? the online option is just a cheaper way to get some meds then locally, if your docs working with u. eg is when my doc prescribed famvir it was half the price online then buying it locally. online is a money saving option.

    i cant remember but have u or can your gp send u to a endocrinologist ? They are suppose to be the experts on diabetes as well as help with orthostatic issue possibly related to aldosterone, cortisol etc

    Its a shame u cant get the iv's done regularly and cheap or a cannula similar to dialysis patients, basically a permanent cannula, then u could do your own.

    its frustrating when u cant get help or u know something that actually helps but u cant get it.

    i guess Adelaide being one of the smaller capital cities have less options then the other capital cities on the east coast, although i still think it would be very costly to have it done as it would be an off label thing unless they can narrow down the diagnosis.
    MeSci and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Yeah, so far all my weekly catheters for the IV antibiotics have been on the back of my hand and my wrist :meh:

    The nurses from the home health care used to work at hospitals, and the one man-nurse suggested an echo or something at the hospital to find a good spot for the catheter on my upper arm. I would NOT want my hand catheter inserted all week, or for an indefinite time period. It reduces how much I can use my left arm, since I can't bend my wrist much, and the mesh bandage over my hand itches a bit at times. Plus the big tape thing holding the catheter in place has a tendency to pull my skin a bit if I bend my wrist even a little bit.

    The only thing that makes it bearable is that the catheter's only in 73 hours per week, and only for 3 more weeks. Then two weeks of a break, then 6 weeks where it'll be in 50 or so hours per week. It's pretty annoying to have it in my hand, and I do count the hours until it's removed - 9 more hours this week! :D
    Sushi and heapsreal like this.
  5. Art Vandelay

    Art Vandelay

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    Tania, a few people on Facebook had mentioned being referred to Prof Anne Tonkin at the RAH for diagnosis and treatment for POTS and said she had been very helpful and compassionate. Perhaps she might have some more ideas than your current specialist?
    Little Bluestem likes this.
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    Tania
    maybe Tennillle can help i think she did it for herself , maybe she had someone help??
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    They do but they just want to follow strict guidelines when it comes to things they dont understand enough.

    .....

    Yes agree. One of my doctors had me buy my melatonin online due to the cost.

    I saw an endo ages ago at the hospital and he was very useless (probaby cause I have "CFS" on my hospital records). He didnt even run many tests so missed my testosterone issue. He wasnt worried my cortisol from my 24hr test I took even thou it was out o fthe normal range and low..he said just out of range. He missed I had hyperinsulinemia as he didnt run a 2hr GGT with insulin (my gyno and allergist ended up figuring that out and had me tested). At that point of time I didnt have the issue with my sugar going up.. thou had hypoglycemia on my blood tests but the endo wasnt concerned about that. I'd been told just to eat more often.

    yeah. I have anger issues around this.

    my low blood volume is due to the POTS. So dont know if there is much one can do with that if doctors arent willing to keep trialing me with drugs.

    Thing is there is no good POTS specialist here. The hospital professor I got sent to for it who was supposively an expert in dysautonomia and POTS.. tried telling me that POTS couldnt exist with high blood pressure.. she didnt believe the hyperadrenalic kind of POTS existed even thou I took in medical info for her on it, she didnt even know how to test for POTS properly either! (she kept on going on about how I didnt have pure autonomic failure! which of cause I already knew I didnt have).

    Actually Adelaide is quite bad medically for lots of things. Even Epilespy patients are apparently having to fly interstate to see a doctor for proper management as they dont have some specialist they sometimes need here (I read something about that in the newspaper last year).
    heapsreal likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    Yeah that sounds annoying. I'd be the same and hate to have a catheter left in my wrist (I'd be scared of catching it on something).
  9. taniaaust1

    taniaaust1 Senior Member

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    She was nice but she certainly did not know much about POTS!! and was extremely closed minded and unwilling to look something up and learn. She even told me it wasnt possible to have hyperadrenergic POTS as she said one couldnt have POTS and high blood pressure issues at the same time. I even took in Dr David Bells info to her on the types of dysautonomia in CFS and she just dismissed it completely (thou she did look at it)... said it it couldnt be true. She simply wouldnt believe that someone can have high BP spikes and POTS. So I think from there, my appointment with her just went downhill and she just treated me like I made everything up.

    Not only that.. she didnt know much about testing it either. I didnt know at that time if one drinks a heap before a poor mans test it can affect it. I drank 3 Litres in the 2 hrs before I went to see her and while in the waiting room just to make sure I didnt feel unwell with it, I didnt know that that can affect a POTS test.. (I should of realised as it does really help my symptoms having a heap of water in a short space of time like that.. I cant do it for long thou as it screws up my electrolites). Cause I drank that (I was peeing every 20mins).. when she did a poor mans test on me my POTS didnt show up. (At the top hospital in America where they test for POTS .. John Hospkins Hospital, they make sure a person doesnt do that.. they have set fluid restriction and requirement before the test so what happened with me doesnt occur giving a false result.

    So all she said in the end was IF I do have POTS to just drink more and have more salt and just sent me on my way. (she ignored my doctors letter saying about my dysautonomia and what he'd seen on testing me.. she ignored the fact I was collapsing at times). She didnt want to see me again and didnt even want to tilt table test me and saw no need (this was even thou I was having collapses!). She didnt even ask me how much I was already drinking (I was drinking 5-6 litres a day at times till I was vomiting, in my attempts to stop dizziness hitting me..and when that hits I collapse very fast).

    She went a lot about pure autonomic failure and how I didnt have that.. I KNEW I didnt have that and didnt need her to tell me that. Anyway she was nice but she certainly didnt know much about POTS, or at least anything at all about the kind I have. She was very closed minded.

    After how she was with me (maybe she has learnt more now?? I saw her about 3-4? years ago) but after how she paid my issues no attention at all and didnt even pay my doctors findings any attention either, I wouldnt go back to her. (unfortunately soon after that that doctor had a stoke and stop practicing.. so I never got to go back to him to tell him what happened with her. Had I have got to go back to him, Im sure he certainly would of contacted her and said something to her as he himself had seen throu monitoring me with the monitor, just how unstable my autonomic system is and would of vouched I wasnt making it up and that the condition really existed.. that one can have high BP spikes with POTS.).

    The fact she wasnt even aware of hyper POTS.. who knows how many with this she must of turned away.
    ........

    Ive been wrongly labeled with borderline personality disorder cause of a heap of my medical issues went years missed (aspergers, major food issues giving me mood swings and I think the fact that with a CFS diagnoses, some psychs feel they have to label you with a psych issue, and I didnt have depression as such for them to label me with) and I do think that may of affected how she treated me to?? wel who knows. All I know is that appointment didnt go well.
    Last edited: Jun 28, 2014
    Valentijn likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    She probably did have someone to help. She sees Dr Belinda? Coyte I believe and Dr Coyte is good. She's the one I wanted to get back to but Disability services wouldnt help me with the transport so I can get back to her and instead they just wanted to focus on getting me on those few appointments to my other doctors (who are at loss at what they can do).

    The one and only time I saw Dr Coyte, I collapsed in her clinic due to waiting in the waiting room too long (and the distance involved to get to any my specialists isnt easy for me to do even with another driving) and she was going to call the ambulance. I convinced her not too so she had me on laying on the bed. I wasnt as bad then as I am now so did recover after laying down for 10 mins.

    Im currently back to not being able to get to doctors at all as the support they gave me for those few appointments have been used.
    Last edited: Jun 28, 2014
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think i gave u a link to biovea awhile ago for melatonin because iherb stopped sending it to australia. Just to let u know, iherb having been sending melatonin again and no issues with customs. Just thought i would let u know as its cheaper again then biovea and postage from iherb is alot quicker too and cheaper?
    taniaaust1 likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    A while back I thought you said that there was a possibility of getting an order for the ambulance crew to give you the IV saline at your house instead of taking you to the hospital. What happened to that?

    When my father was not drinking sufficiently and winding up in the ER for saline, we were able to have a home health nurse come in and give him the IVs instead. They had a box of stuff for the IVs in the house. I do not know what the stuff was called. Do you have home health nurses in Australia? Could you get one to come give you saline?

    Have you tried drinking electrolyte solution daily to prevent the dehydration?
    ahimsa and Valentijn like this.
  13. PNR2008

    PNR2008 Senior Member

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    In Sergeant Rex by Mike Dowling on page 187, "Before deploying to Iraq we were given a medical briefing by the Camp Pendleton veterinarian. She put together a medical kit for each handler so we can do some front-line medication of our dogs. She taught us how to insert an IV drip, to rehydrate the dogs. That's proved critical out here in Iraq. Several times Rex has come in off operations so dehydrated that I've hooked him up to an IV."

    @ahimsa I appreciate your devotion to your kitty ( I've done some over and above care for mine too) but these dogs work in 130 degree heat, running, searching and ducking fire, they have to be revived quickly when they can hardly even drink water.
  14. taniaaust1

    taniaaust1 Senior Member

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    I think that is what the last ambulance crew the other week was trying to access me over but they ended up thinking there was too many variables for my collapse as I'd also may of forgot to eat that day, I couldnt remember if I'd forgotten to take my drugs or not.. and they also wanted "proof" I was collapsed on the floor so wanted me to walk to show them I'd just collapse again. (my support workers word and mine and me being on the floor for a couple of hours, wasnt enough proof to them that I'd collapsed! It was ridiculous).

    I ended up yelling at them that I wasnt their guinea pig. (If I'd passed completely out or had a seizure due to having to prove to them I couldnt walk, they would just taken me to hospital anyway). and besides, I do not like collapsing, I end up often with bruises and they werent about to catch me.

    and then they tried to tell me it was impossible I could have low blood volume when they were getting high BP readings for me (they had no understanding of hyperadrenalic form of POTS).. so started arguing me about what I was saying couldnt be true.

    ........


    I'd have to get medical approval but my doctors arent doing anything yet except expecting me to go to the hospital when I collapse and my GP is just talking about trying to get me back to a doctor at the hospital.

    We have red cross nurses I think which can come to peoples homes, Im not sure if they can stay the whole time someone is having a drip run throu or not? (for me its a long process as I seem to need 2 bags of saline given every time I collapse).

    My body cant hold in the fluids, Im drinking up to 5L at times and still dehydrating and ended up in hospital. I can get to the stage where Im having to pee every 20mins at times if Im having to drink a lot. Which then is really shocking for my ME as Im up and down to the toilet till Im completely exhausted. I have tried eletrolyte (I tried one highly recommended by someone here) but it didnt help me any more then my soda water with the added potassium and me salting everything does. (I actually found the one I tried harder to drink then the soda water).
    Last edited: Jul 12, 2014
  15. taniaaust1

    taniaaust1 Senior Member

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    OMG. I just realised when I saw this thread that this was the reason why Tennillle phoned. The whole reason why she phoned, I forgot when she phoned and I didnt even get her to vertify what she does re saline IV. (I dont even know I mentioned it to her).

    darn brain!! its so frustrating. :(

    oh well, I ring her next week and hopefully I will not forget again next time we speak, by then she'd have spoken to Dr coytee and see what she has to say.
  16. taniaaust1

    taniaaust1 Senior Member

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    That's very good to know, thanks.

    I are trying to avoid melatonin right now as its said to be quite bad for POTS and I dont want to risk it possibly playing a part in my current severe POTS episodes. Thou I may end up having to take it again.
    heapsreal likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm concerned about you trying IV saline on your own, Tania, as even a former nurse (@Kina) points out the difficulties.

    Have you ever done any kind of IV on yourself? (I'm guessing that the B12 was not IV but maybe I'm wrong.)

    I was briefly an injecting drug user in the 70s, and it took a while to learn even how to do that - just one-off, small-volume injections. Even then you have to be careful - to avoid infection, to avoid air bubbles, and to avoid hitting an artery for example. I would be extremely hesitant to try an IV drip, despite knowing how to find a vein, etc.

    The fact that you have memory and cognition problems is also a concern. It could lead to mistakes with serious consequences.

    I do of course understand (and share) your frustration at not being able to get help until you collapse, which is totally unacceptable but sadly all-too-common. Prevention hardly seems to be on the agenda with health services.

    Like many of us, I have polyuria, and have struggled to deal with the type that doesn't respond to desmopressin but is driven by electrolyte loss.

    Recently I put some more pieces of the jigsaw puzzle together and am working on the theory that my electrolyte-losing polyuria is due to inflammatory cytokines, and that it may be prevented or at least reduced by taking anti-inflammatory supplements.

    I have started using resveratrol and curcumin supplements for this. It's too early to tell, but so far I don't think I have had electrolyte-losing polyuria for a week or so.

    EDIT - think I may have 'spoken' too soon - think I am losing some electrolytes at the mo. Still might be reducing it (hopefully!).

    I've blogged on the issue here and here. Worth a try?
    Last edited: Jul 12, 2014
    heapsreal likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    When I have IVs done for antibiotics, the nurse just gets everything set up and started and she leaves. Then I can finish things up myself when the antibiotics are done dripping. But I'm (relatively) healthy and alert for the entire process.

    If having severe OI problems, it might be better for the nurse (or someone else) to stay with you until it's done, to make sure that there's no problems in case you're unable to unhook the IV and possibly remove the catheter at the end.
    MeSci likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    I cant even get up to safely go to the loo till Ive had around a bag and a half, so would need help till it all takes affect. (I usuallly stay drinking while this is all going on too). I cant really be left alone after a collapse till Im okay enough (nurses usually to give me a bedpan which I have to use while laying down and I usualy end up all covered in pee and needing changing (Im going to try to get something from ebay to hopefully stop this from happening).

    Of cause there wouldnt be this issue at all with me being this debilitated if I was getting IVs regulary rather then only after I'd collasped.
    MeSci and Valentijn like this.
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This is surreal! :wide-eyed:

    Why are they not better trained? Can you get them some info, maybe from your doctor?

    My Dad's in-home IVs were arranged by a hospital doctor. Could you ask one to arrange it for you the next time you are in the hospital?

    The nurse did not stay during the IV. She went to other clients, then came back when the IV was finished. I suppose she would also have to change the bags for you if you needed two.

    And you doctors are doing what to resolve this problem? :confused::mad::bang-head:
    ahimsa and Valentijn like this.

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