Diabetes Insipidus and 8 liters of fluids

Discussion in 'disABILITIES!' started by ExLuna, Nov 30, 2018.

  1. ExLuna

    ExLuna Earning My Ears

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    I have severe NDI. It requires that I receive at least 8 liters of liquid a day to survive, any less and I will go into hypovolemic shock and can die. My problem is that I can’t drink only water. My electrolytes drop too much, and can again cause me to die. It has to be a sports drink. I prefer Gatorade.

    Getting 8 liters into the park would probably be possible, but who cares that much of anything. I could buy Powerades there, but 15 to 20 20 oz Powerade gets pretty darn expensive. I use powdered at home, but the amount of powder I’d have to carry is ludacris.

    Basically I’m drinking at all times. Any ideas? I put this question to my Nephrologist and he’s working on it, but he doesn’t know Disneyland like we do.
     
  2. Happyinwonerland

    Happyinwonerland DIS Veteran

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    An 18 oz can of gatorade powder can make twenty three 12 oz servings. Could you bring one of those a day into the parks? It sounds like that wouldn't be any different than your normal routine, if that's what you use at home. It could easily fit in small a backpack and be mixed with free water from the quick service locations.
     
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  4. Mrsjvb

    Mrsjvb DIS Veteran

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    two options: bring the single serve packets in and mix as you go., or fill a camelback with your flavor of choice. or both.
     
  5. ExLuna

    ExLuna Earning My Ears

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    I usually go through more than one 18 oz can, but you gave me an idea. I could take my camelback and refill it though out the day. I could take a couple cans and throw them away after each is finished. That way my load will get lighter through the day.

    Thank you for the advice. Both of you. I just needed help thinking outside the box. Sometimes I get too set in my ways
     
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  6. ExLuna

    ExLuna Earning My Ears

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    I just found something interesting. Emergency C Hydration uses a lot less powder (not as much sugar), and has a better blend of electrolytes.
     
  7. DisneyOma

    DisneyOma DIS Veteran

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    Wouldn't the doctor be able to give you a more concentrated, less sugar/crap version of the electrolytes you need? Also, do you need to drink 8 liters throughout the day, or just while you are in the parks? What if you brought 5-6 liters with you, and drank the rest before you go and after? Wouldn't that lighten your load?
     
  8. ExLuna

    ExLuna Earning My Ears

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    I take a bunch of prescription strength electrolyte supplements. I keep them with me when I go places. I would need a lot more if I didn’t drink a sports drink because that’s much water flushes them out of me. Plus it’s better to get them gradually throughout the day than in one big dump.

    I like to plan for a full day plus a little extra, because if I sweat I need even more.

    But yeah 5 or 6 liters would be enough if I wasn’t doing anything athletic.
     
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  9. kaytieeldr

    kaytieeldr Post hoc, ergo propter hoc

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    A little confused. Twenty three 12 ounce bottles is 276 ounces, which is 8.14 liters
     
  10. TheDisneyNurse

    TheDisneyNurse DIS Veteran

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    Your doctor hasn’t tried desmopressin? I would delay a Disney trip until you are healthy enough. I’ve never heard of drinking 8 L a day of gatorade to treat DI.
     
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  11. ExLuna

    ExLuna Earning My Ears

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    Maybe I’m drinking more than I think. Diabetes Insipidus means that the kidneys never turn off. They go full force 24 hours a day even flushing out the fluids you need to survive. I urinate 8 to 10 liters a day. Therefore I must replace it.
     
  12. ExLuna

    ExLuna Earning My Ears

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    I’m impressed you know so much about it. Most people think I should just test my blood sugar more (blood sugar has nothing to do with NDI).

    It’s nephrogenic so Desmopressin doesn’t work. Your probably thinking of central DI. In CDI the problem comes from a chemical from the brain so replacing it with Desmopressin is a good fix. In NDI the problem is the kidneys recognizing the chemical. You have all the hormones you need. Your kidneys don’t recieve them.
     
    Last edited: Dec 1, 2018
  13. Lauren in NC

    Lauren in NC Mouseketeer

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    If you need more than one can and don't want to schlep them around, there's also the lockers near the front of the park you could store extra in. I'm trying to think if there's any shows or rides that wouldn't allow you to have a drink with you, but I can't think of any!
     
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  14. TheDisneyNurse

    TheDisneyNurse DIS Veteran

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    I know! The “diabetes” always throws people off. It has nothing to do with BP. I’m an onc nurse, so I’m more familiar with DI originating in the brain/CNS. Thank you for teaching me! I actually had no idea it could be nephrogenic, as well.
     
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  15. gap2368

    gap2368 DIS Veteran

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    First aid will also hold things for you. I am pretty sure if you let them know what the extra water ( power aid) what every you need they will more then likely store it for you so you will not have to carry everything with you. They also have power aid ( it is in small bottles) there Incase you reallly need it but it sounds like you need a lot so I would not count on just using what they have but it might be enough to get you by for 15 or so minutes
     
  16. DisneyOma

    DisneyOma DIS Veteran

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    Most attractions do not allow drinks or food in the queues. A lot of guests ignore this though, so they have barrels placed at the beginning of queues and at the end, so people don't bring open containers on the attraction vehicles.
     
  17. gap2368

    gap2368 DIS Veteran

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    Most do allow food and drinks the few that do not will say something like TOT they do not let you inside but the out side que you can
     

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