Disney/Flying with anemia

Discussion in 'disABILITIES!' started by mydisneykids, Oct 14, 2018.

  1. mydisneykids

    mydisneykids DIS Veteran

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    I was recently diagnosed as anemic. I am happy to finally have confirmation that how horrible I am feeling wasn't all in my head. I have been exhausted, lightheaded, out of breath at the littlest thing and had a blackout at my worst.
    My GP prescribed iron infusions. I will only be able to get one of the two in before my trip in November since she wants them spaced 2 weeks apart.
    First has anyone had any issues with flying with low hemoglobin? I had no idea that could be an issue but in doing research I have learned it can be. My hemoglobin is 8.5 and my iron and iron saturation were very low.
    And does anyone have any suggestions or tips on how to handle the parks? It is killing me as I love all the walking and took pride in the days I looked at my Fitbit and realized we had walked 15 miles or much more in a day. But for comparison we went out with 2 of my kids to a place like a local dave and busters this morning and after an hour of standing, walking around and playing games I was shot. Headache, lightheaded, beyond exhausted.
    It will be just my husband and I and our first trip as empty nesters. I have never used a scooter before and don't know if it is worth the expense or having to learn to use one for the first time in the crowds Disney has.The on and off the bus and cost would have me the most worried. Although day to day park rentals would be an option.
    Thanks for any help anyone could provide. I will be talking to the dr. when I go for the infusion for flying and travel suggestions too, but it always helps to hear personal experiences and this is the first time I have had any health issue like this and I am really struggling with it.
     
  2. Selket

    Selket Been there - done that

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    I can't speak to the flying issue - is taking the train an option if you had to do so? This sounds like a great question to ask your doctor as you mentioned you're doing.

    As for the scooter, it's far cheaper in the long run to rent off-site. Park rentals are pricey and there's always the chance it's not available - plus it doesn't help the issue of getting around your resort or to and from the park (assuming you're staying on property). There's several good threads about ECV rentals - I've rented from Buena Vista and Gold Mobility and both were fine - Gold Mobility was fantastic and they will come out and help you learn how to use the scooter so it's great for a first time renter. If loading on and off the bus would be too daunting, you could always have your husband do it if he's willing. It's not as bad as you think. If your symptoms in November are similar to they are now, I think renting a scooter is your best option so you can save your energy. You can also park the scooter at the park and walk when you feel like it or your husband could drive alongside you.
     
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  4. mydisneykids

    mydisneykids DIS Veteran

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    Thank you so much for your help. I have broken down and started to collect information on scooters. My husband couldn’t go on our family vacation this year due to work so I just want this to be a great trip and if it means me having to rent a ecv I will. Never thought I would be having to do it this young but I want this trip to be all it can.
    I have my first infusion scheduled for this Friday so hopefully will have a lot of questions answered.
    Do you know how often the off site rentals run out of inventory? We are going Nov 7-16 and I am solo the first
    2 days as he will be at a convention. If I wanted to give it a try without it and the order while down there could
    I be out of luck if I wait?
    Thank you so much for your reply :)
     
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  5. redberyl

    redberyl Mouseketeer

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    You can go to Wal-Mart and practice on their scooters so you have some experience before you do the crowds at disney
     
  6. kaytieeldr

    kaytieeldr Post hoc, ergo propter hoc

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    Won't you have had both injections by the time you leave? Two weeks after this coming Friday is November 2. Granted, you may not be full-on ready for 15 miles per day, but you might be pleasantly surprised.
     
  7. lanejudy

    lanejudy Moderator Moderator

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    I am somewhat familiar with the exhaustion of anemia, though I don't think I was as bad because mine was treated with oral iron supplements (in addition to surgery). I can't imagine how you must be feeling to have blacked out and now need infusions.

    Rent the ECV from off-site for your full stay; that will be considerably less expensive than on-site daily rentals, plus you are guaranteed to have the unit (parks run out). It isn't going to save you much money to shave 1 day off. If you really want to try that first day without -- I recommend taking the ECV to the park, then parking it at one of the attractions and try to manage walking. If you found just an hour at your local Dave & Busters type place so exhausting, you might never make it back to your resort if you go to a park (alone) without the ECV -- which could have the domino effect of negatively impacting the next day or two. Sorry if that sounds rough, but WDW is going to be exponentially more walking and standing and riding.

    Enjoy your vacation!
     
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  8. mydisneykids

    mydisneykids DIS Veteran

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    I hope to have both. I have the infusions done at a cancer center and even though this has kicked my butt I am lower on the priority list as I should be and I can’t have them hold the date for the second one until I complete the first. My numbers are so low they are trying to get me in before Friday but it is based on cancellations.

    The only issue is I have heard some people feel better a week or two later and others it takes a number of weeks for it to be fully absorbed into the cells and to feel better.
    That is why I did’t want to prebook an ecv in case I was one of the lucky ones and felt good enough to walk while there. There is just no way of knowing.
     
  9. Betty Rohrer

    Betty Rohrer DIS Veteran

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    one thing to remember if while you are solo and decide you need one while at park the park could be out of ECVs for the day plus you can not take a park one out the gate to your form of transportation. another way to look at using an ECV is would you tell someone who needs glasses to see that the should leave them home because they could drop and break their glasses? of course not, the ECV is a tool to make your park trip more enjoyable and have you be able to keep up with your husband/family at closer to their speed than yours. one trip an adult daughter, age 35, had a heart attack before trip and had to use ECV for that and rest of her trips. I also have no answers about flying. and lastly have a great trip
     
  10. Smittolis

    Smittolis DIS Veteran

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    Infusion therapy, while intrusive given its nature, is the fastest way to get nutrients and medicine into the parts of the body that need it. Having infusions will greatly increase the body's ability to maintain blood oxygen levels with a definite immediate boost post infusion. The effects will be cumulative over a number of visits, but you will feel a drastic improvement post infusion.

    The issue with flying is the partial pressure of Oxygen changes given the pressurized cabin and altitude, with the added issue of anemia the body's ability to uptake oxygen and use it efficiently is greatly diminished. I think you will feel much better post infusion and will be in a better position to make some informed decisions on how you feel.

    Just think of getting around the parks in a 'teaching sense'. If someone is deficient in math, they are given problems to work on and additional help to be successful, it doesn't mean they are 'broken' nor lacking in anything, it just means they need a little additional help to get them where they need to be. Your use of an ECV is exactly the same, it is a method to use while you get back up to speed. No need to feel bad about it, no need to feel guilty, its a tool that you are using to facilitate your enjoyment.

    I have infusions for different issues that have different affects and have done for the past 3 years monthly, so I am speaking from an position of experience albeit with a slightly different context. Just remember your trip is about your enjoyment, so don't be afraid to use the available tools at your disposal ;o)
     
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  11. KPeterso

    KPeterso DIS Veteran

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    Good luck with the infusions. I hope you are feeling better soon.

    Like others, I would really look at getting the ECV. We have used a couple other companies in the past and just used Gold Mobility (mentioned by someone else up thread) in September and they were fantastic. Will go over anything you need with you. Also, we get the smaller (travel type) size scooter with 3 wheels (Pride Go-Go or something like that), and my Mom loves it. The smaller ones are much easier to maneuver and make the tighter turns. The parks ones are huge and not nearly as easy to maneuver in the line queues.
     
  12. Selket

    Selket Been there - done that

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    I agree with others that it may not be cheaper to cut a day or two off from the rental. Gold Mobility has a flat fee for a 7 day rental - I think - so going 5 days with them would not be cheaper. However they are cheaper than some other companies (like Buena Vista) last I checked so overall you may spend the same but get more days.

    I also think you could probably decide to rent while you're down there IF you want to wait - most likely someone will have inventory if not everyone. Always a chance they won't but I don't think I huge chance. Also if you want to rent ahead of time but think you may feel better before your trip and want to cancel - ask about the cancellation policy.

    Truly you may find that if you're not back to full strength that renting the scooter can help you get around the resort (some resorts are HUGE - the walk to the the lobby/food court can be long) and it's great for the parks with tougher walking conditions - for me that is Epcot (lots of space between attractions) and AK. AK has so much beautiful stuff to explore with the walking trails and such - and they are scooter friendly. I really enjoy taking the scenic route now whereas before I just wanted to do the minimum walking possible (and a lot of sitting). Also the walk into some attractions can be long even with a FP (like Soarin, FOP, Safari ride come to mind). It's very easy to take the scooter - you aren't getting special treatment or jumping lines or in any way bothering anyone else's experience of the attraction - you're in line like everyone else and almost always in the same line. Although I do suggest getting FP as much as you can just to cut down on the wait times. You can also park the scooter whenever you like and go into shops or park and do the line que if you know it's a short one (I usually park and walk through the que for Buzz, for example, because you cannot take the scooter and I only ride it when I have a FP). If you're not at full health then the only reason I can think of to NOT rent the scooter is if it's a great financial burden. The difference it may make to the enjoyment of the trip could otherwise be well worth the cost.

    Hope all goes well with your treatments and you're back to 100% sooner than you think!
     
  13. mydisneykids

    mydisneykids DIS Veteran

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    Thanks all. Met with hematologist today and I will have both iron infusions before the trip and she said with that my numbers should be good to fly.
    I will play the ecv by ear but have the numbers with me. I want to at least see if I can do it without it but if not I am now open to getting one. I just want to have a relaxing time, that is needed even more after all this and if I am still not back to my old self yet and need it than that is what I will do.

    Thank you. Perfect quote for me. I taught K and 1 before staying home to raise my kids and that was put perfectly. Thank you again :)
     
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  14. Selket

    Selket Been there - done that

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    That's great news - I hope your recovery goes along speedily and you have a wonderful trip!
     
  15. DisneyOma

    DisneyOma DIS Veteran

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    If an ECV is too expensive, could you rent a wheelchair? Your husband can push you when needed, or you could just push it yourself and use it to conserve energy by resting some weight on it and having a seat to rest on. You did state this was an empty-nester trip, right? Just the two of you? You could even just take it at a slower pace :)
     
  16. Smittolis

    Smittolis DIS Veteran

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    That's great news! Hope all goes well
     
  17. lookame

    lookame DIS Veteran

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    At my lowest I was 6.9 and I was also put on iron infusions. I don’t tend to feel much different when I’m anemic as compared to when I’m not, however, I do tend to black out whenever I stand to fast when anemic and I can also sleep a lot (but that depends on what circumstances I’m under and if I’m symptomatic). Iron infusions did have me feeling better after a few, depending on your infusion they say by the third one you can really feel a difference. To your questions regarding while in the parks...really just take it easy. Don’t plan to hit them hard and understand when your feeling tired. Sit down when needed and take breaks. If your feeling extra tired then go back to your room and nap, you’ll feel better afterward.
     

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