Immune Disorder - DAS?

Discussion in 'disABILITIES!' started by JenniBugInPink, Jun 18, 2014.

  1. Random Ninja

    Random Ninja DIS Veteran

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    I count September as summer here, so it's still often hot. You might want to bring a couple of masks for each day and swap them every so often. That's what I did at SWW a few weeks ago. It was just too hot to keep the one mask on; swapping helped immensely. The hot and sweaty mask is just blah!

    Have you looked at Vogmasks? There's a girl in my neighborhood who's immunocompromised and she swears they are the best thing ever. The microfiber ones are supposed to be at the NIOSH 95 or 99 standards. I haven't tried them out myself yet but they look pretty cool.
     
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  3. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    I can't speak for the person who wrote that, but I think they meant that your wait in the Fastpass Line could be 15 minutes.

    The accommodation given by the DAS is waiting outside of the line. When you return to go on the attraction, you come into the Fastpass Plus line.
    With a Fastpass, you have a one hour time frame to return. With DAS, you can return any time after the Return Time starts that day.

    If the Fastpass Line looks longer than you feel comfortable waiting in, you can stay close by and enter the line when it looks less busy. Keep in mind that some of the Fastpass Plus or other lines may actually look like a longer wait than they are.
    We noticed that when we were at WDW in October/November 2013 and this Spring during Spring break. It often was because people at the Magicband reader at the entrance had issues - did not have their Magicband/pass ready, didn't know what to do, returned at the wrong time.
    So, the lines at the entrance back up until they get past the scanner and then thins out.
    One thing that has changed is almost every attraction now has Fastpass Plus lines. In some cases, it is a line that is parallel to the regular line. An example if that would be Buzz Lightyear. The regular line there does some back and forth; the Fastpass Plus Line is right next to it, but with wall on one side and the regular line at the other side.
    Some have a separate line, like Enchanted Tales With Belle. But, after waiting separately, you will enter a medium size room which will be packed with about 25 other people.
    You may want to do some exploring of videos from YouTube. A person called FatPanda has posted some good videos lately which show an overview of the entrance, queue and boarding areas well as the attraction.
    You could use other members of your group to help keep separation in front and behind you, but may not be able to do much about closeness from the side.
    Many people had posted, especially in the first weeks, about not getting a DAS when they had an ECV were depicting they would get a DAS because they had gotten a GAC. Many talked about stamina needs and had not thought of any other needs; since they only talked about needs that were met by using the ECV, they were not given a DAS.
    Many posted on one thread about not getting a DAS, but posted some where else about going back and getting a DAS. Since the 2 were not together, they didn't always get connected.
    Even during that time, using one of the touring sites like www.touringplans.com or www.easywdw.com are helpful.
    Even if you don't follow an actual touring plan from one of those sites, just knowing which days they recommend for which park will help you to be on the least busy park.
    You are probably already aware that getting to the parks at opening gives the smallest crowds and waits.
    What DAS provides is a place outside of the line to wait.
    Where you wait is up to you, so you are free to find whatever place you think will meet your needs.
    When you come back yo the attraction, you will enter through the Fastpass Plus line.
    The few attractions that are not accessible thru the regular or Fastpass Plus lines have a separate wheelchair entrance. Most are accessible through the regular line at least thru the majority of the line.
     
  4. sookie

    sookie DIS Veteran

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    I will go into this by saying that I sorry you have to go through this.


    I understand you are trying to tell us your level of education because it allows you to express that you understand your condition. I got that. But the things I posted were pretty much common sense. Managing your care will need to go to your medical team. My advice had NOTHING to do with your employment, education, certification - all of that is separate. I don't care if you are a hospital janitor or a licensed LPN, RN, NP, MD. I really don't care if you are the POTUS. You could have a Vo-Tech certificate, have completed a diploma program, an associates, bachelors, masters, or PhD in Nursing. In fact, I don't care if you are the Pope posting here in disguise. You need to take a step back and have your medical team help you objectively make this decision. They need to know when you are going (cold and flu season?) as well as other things you expect to encounter as a Disney Parks lover and DVC holder.

    And to be fair to you - I don't have an RN / BSN. I've had an associates degree, a BSN, MS(N), and will be finishing my PhD in Nursing in just a few short months. So I am an RN and an advanced practice nurse. Does it matter in this conversation? Nope. Not at all.


    Do I think that this has been a really unfair and hard blow to you? YES - of course! But I'm going to assume that you have family and friends who love you and depend on you. Think of that with every decision you make. If something like a Disney trip could make you sick enough to die - I think it does lend itself to considering a conservative approach while talking to your care team (the lead physician in particular). Let him know your Disney plans, previous experiences, accommodations, dates of travel (flu and cold season might be a deal breaker for you). Let them help you make healthy decisions.

    I know you love Disney - you said you have even bought into DVC! To be told to reconsider your vacationing habits for now and the near future would be very difficult. But strongly consider this. I wasn't being flippant. It doesn't mean that Disney is forever off your list. But this seems to be a fairly new development / diagnosis. You need to think of what is best for your health, right here, right now. You need the guidance of your entire medical team.

    Also - take this with a kind heart. Please don't take your own training as a nurse as the final say. I tell this to my friends, the people I work with - everyone. For instance: I never, ever treat my family members unless I absolutely have to. I feel that I can't treat my kids with complete objectivity if they are in fact very sick. I would rather place them in the hands of someone who can objectively assess and treat them. I don't want MY judgement as mom to cloud my objective decision making. It is actually best practice.

    You have heard the saying that "doctors and nurses are the worst patients" right? There is some truth to that as well. We really can't objectively treat ourselves or make good judgements about alterations to our care. It is because we can't be as objective about our own health as the people who take care of us (and the people we take care of). In the end, nothing matters unless you really did become critically ill from being on a crowded vacation. Then it really, really matters. :grouphug: One nurse to another.

    On another note - I also think the chances of being able to obtain a DAS are about 50/50. There is no designated separate place to wait. Unless something has changed, you can just wait someplace else other than the FP line (out in the huddled masses). They may not see that a DAS is beneficial to you because of that since you will still be "exposed". If you do get a DAS, the DAS return time for each attraction is 15 minutes shorter than the current standby time (I believe - could be wrong on this). If the ride is a "walk on", it is usually easier just to go ahead and do the ride as a walk on. Use My Disney Experience application - it can tell you which attractions are walk on and which ones are not. Very useful when you are planning your FP+ and DAS time. Give us an update on how things went!
     
  5. ecatzippy

    ecatzippy Earning My Ears

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    I don't know what the answer is for your trip. However, I just wanted to put it out there that we work with a clinical immunologist for weekly IGG replacement for an immune disorder and it has been life changing for our family and many others. Hopefully they can give you a weekly or monthly IGG boost so things are a bit easier. It has made it a lot easier for us to go to Disney!
     
  6. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    The Rheumatologist and I have discussed starting IgG, but I've been a little hesitant because of all the side effects I've read about. It sounds like it's gone well for you. I'm on so many meds, I've just gotten skiddish I guess. Since my kidneys crapped out, I'm not on nearly as many as I once was, LOL. I see the Rheumy in about 10 days, so I'm sure we'll discuss it again.

    Thanks for the reassurance!
     
  7. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    I'm a long time member of http://touringplans.com. It's their Crowd Calendar that determines when we go. We use their plans, though FastPass+ certainly has kinda kinked things up a bit. For me, I think it will be a good thing, as I have always been an uber planner with Excel spreadsheets and the whole thing down to a "T". I hope so, anyway. My tiredness has always been the fly in the ointment. I always seem to plan more than I can do. Now that, for instance, almost all lunch & dinner reservations require a 2 day cancellation (rather than 1), I've made fewer dinner reservations in fear that I might be too tired to keep them. We ended up canceling 2 on our last trip. Anyway, back to the point, we follow all the 'rules' for touring (like don't go to the park with EMH since it will be more crowded, etc.). So, no, I'm not expecting miracles from a DAS. I realize it's just one tool in the arsenal, but I would like all the tools that are, and should, be available to me.

    It's good to know that lines are more accessible to ECVs now. I didn't know that they had redone so many in three years?!? I did know about the FP+ lines, though.
     
  8. cmwade77

    cmwade77 DIS Veteran

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    This is true, well the FP return time should never be over 15 minutes unless there was a problem with the ride.

    That being said, while you can't completely avoid the huddled masses, you can minimize contact with them. Consider this, you are in line for 90 minutes in a tightly confined space with hundreds of other people or you are in line for 15 minutes with a hundred people in a tightly confined space.

    Yes, you are still in a tightly confined space with other people, but odds are substantially more in your favor in the second case.

    I honestly don't know where other people are getting that you shouldn't ask for a DAS. I honestly think that giving you an alternate place to wait (which is EXACTLY what the DAS is designed to do) would be essential for you.

    My dad has leukemia and his white blood cell count is very low, at DLR they didn't even question it. The only thinking that took us extra time was that they were trying to figure out if there was anything extra they could do for him, as they realized that it was quite likely his last trip to the parks (we all hope that we are proven wrong on that one, but who knows?)

    But they made point that this is exactly the kind of thing that this was designed to accommodate, so that he could have a safe place to wait and minimize close contact with others.

    And it did work, he did avoid getting sick, which probably would not have happened without the DAS.
     
  9. cmwade77

    cmwade77 DIS Veteran

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    This is a case where you could most likely talk with the specific restaurant and get the cancellation fee waived. Honestly, they don't want you showing up sick and being miserable.

    And yes, the DAS should be one tool. Hand sanitizer, antibacterial wipes and possibly a face mask could be other useful tools. I can't believe that I am recommending those items, as I feel we way overuse them in our society which has been leading to antibiotic resistant bugs, but in your case they make sense.

    Also make sure you schedule your FP+ in a way that may help you avoid lines that might not be avoided with a DAS return time. For an example, if an attraction has a different queue for FP+ and DAS, you may not want to get a FP+ for that attraction, as the DAS queue will most likely have fewer people in it.
     
  10. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    In the cases where we needed to cancel dining reservations because I was wiped out, they actually did wave the fee. I called and asked, and said we would go if we had to, but that I really needed to cancel if at all possible and they let me. I was supremely grateful, and cried like a baby on the phone both times because I was so relieved.

    I know exactly what you mean about the hand sanitizer, gels, etc. My husband works in IT in a hospital, and I get after him all the time for not just washing his hands with plain soap and water (which is available) and using the chemicals instead. I don't have the chemical stuff here at home. When I'm out, though, I do have a pocketbook full of the stuff - wipes to clean the buggies, the ECVs, open the doors, clean my hands, etc., hand cleaner, and on an on. I hate the stuff, but I depend on it. My doomsday fear is a bug we can't treat, and I hate possibly helping create it. Maybe it'll come from an animal vector and won't be my fault. What a terrible thing to think! I am not a good person...:crazy2:

    I don't know whether to make my FP+ plans under the assumption that I will or won't get a DAS. I'm a pessimist by nature, so will probably assume that I won't. I plan heavily; even my backup plans have backup plans! But, I never count on anything before it happens - I won't turn calendar pages over before that month, not even to look at the picture. It's like it's bad luck. As a side note, my mother did not have one single baby thing in the house until after I was born. She had it all delivered once I truly existed. She passed away some years ago, but I guess I come by it honestly. :upsidedow
     
  11. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    I'm glad things worked out well for your dad and he stayed well! I'm also glad that the CM were so accommodating. I think things are handled differently at DLR than they are at WDW. The volume alone at WDW makes it a problem for CM, so I do understand their hesitancy. It makes sense to me for me to have it, but even from reactions here on the DIS, I can tell that it isn't as clear to everyone as it seems to me, LOL!

    I hope your dad is doing well right now, and that you have him for a long, long time. Where is that pixie dust emoticon when I need it? Oh here! pixiedust:
     
  12. johnsgrl

    johnsgrl Earning My Ears

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    Dear OP,
    I truly feel for you! I will offer no judgement, nor even advice! Instead, I will offer my experience. I use an ECV or wheel chair at Disney due to stamina/mobility issues caused by an autoimmune condition. I added a medication that suppresses my immune system to the long list of other meds as a treatment just about the time the program changed to DAS from GAC. I drove my ECV to Guest Services on arrival to the park and explained the potential issues of crowded congested lines and immunosupression. With your medical background you should have no difficulty explaining your needs and how an alternate waiting area may benefit. I had no problem having a DAS issued, nor have I had any issue in having it renewed over the course of at least 5 subsequent trips.
     
  13. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    Thank you. I can't remember if I posted in this thread or not that a "biologic" medication is how we originally thought that my immune system was wiped out. The rheumatologist is now (2 wks ago) thinking that, in chicken and egg fashion, I may have had the immune issues first, and that we just found them because we checked on my IgG, etc. levels because of the medication. It's becoming more interesting by the minute. :upsidedow Hopefully, insurance will approve infusion of IVIG prior to my trip, so I would have immunoglobulins from hundreds of people :eek: if I can't have my own. :eek: Ask me if that freaks me out...:eek::scared1::eek::scared1::eek::scared1:

    At any rate, thanks for the encouraging post. I wish you the best of health possible, and may your immune system rebound each and every time you get that medication! :goodvibes
     
  14. Piper

    Piper DIS Veteran

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    JenniBug, please report back after your trip. I, too, have stage IV Kidney disease, no immune system, and rheumatological problems among other things. (The doctor gave me a list when she referred me to a neurologist. Before she gave me the list, she asked if I was depressed and I answered, "no." I told her I was going to reconsider my answer because reading the list depressed me to no end!)
     
  15. DvcDoc

    DvcDoc Mouseketeer

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    Piper, I was Stage V for our two trips in 12 and 13, doing PD the entire time we were there. Now that I'm post transplant, my immune system is suppressed as can be. Dealt with that for our trip in June. If I can answer any questions, let me know.
     
  16. Piper

    Piper DIS Veteran

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    Thank you. I am lucky. Both my primary doctor and my nephrologist are good about answering questions. My primary doctor is also good about coordinating with my 6 "specialists" and making sure what one says to do does not interfere with another one or cause additional problems.
     
  17. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    Will do! I had to laugh at the depression question, cause that's the one thing I've had since back before I had any physical ailments at all. I dealt with chronic depression back when the earth was cooling and I was just a teenager. Thanks to good meds, that part of my life remains under good control 99% of the time. Good thing, cause Jenni off her meds is not a pretty sight, LOL! :scared1:
     
  18. clanmcculloch

    clanmcculloch DIS Veteran

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    From what you've explained here about needing to not be in tightly packed spaces while waiting, it sounds like your needs are exactly the kind of needs that the DAS are designed for. If I was you I would definitely go to Guest Relations to discuss this need.

    That being said, I have a few other suggestions to go along with that.

    I know you don't like to take your ECV into queues but I would strongly urge you to stay in it for any attraction where there is any unstructured group waiting area like Monster's Inc. Laugh Floor or from what I remember of Rock'n Roller Coaster the end has a group waiting area as well. Most have a roomier area for those with mobility devices. Since you have it anyway, it seems easier to just ride in rather that try to explain at each attraction that you need to wait in that area and why. The DAS just puts you in FP+ lines. To go to the accessible waiting area at the end of the queue you have to explain each time if you don't have a mobility device and even then there's no guarantee the CM there will send you there after explaining. Staying in the ECV is just easier plus it gives you the extra buffer space around you while standing still around all those people.

    Because some FP+ lines an be slow, I make a point of planning to go to those attractions when that line will be shorter. I also make a point of going to the general areas of the park that get crowded fastest at the times that are typically slowest. This is where a good touring plan service is very beneficial. I've found a good touring plan to be my best tool, even more so than a DAS. That does not mean you should not get a DAS. It means that you should employ every tool you can, a touring plan being a powerful one.

    Make sure you know a list of places that are typically less crowded and take advantage of them for places to wait and/or escape to as needed.
     
  19. ecatzippy

    ecatzippy Earning My Ears

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    We will be heading to disney this summer with lots of "borrowed" antibodies from thousands of people and I expect them to get the job done for us! FYI, if they decide you have a primary immune deficiency disease the Immune Deficiency Foundation is vey helpful. I hope your IVIG gets approved and you have a magical trip.
     
  20. CoolDisneyCat

    CoolDisneyCat DVC member - BCV

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    To the OP -

    I wanted to say hello!:wave2:

    I'll be there the same time as you. I have RA as well. I'll be cruising around on my scooter trying to avoid germs, too!
     
  21. JenniBugInPink

    JenniBugInPink Nobody has seen them since 1982

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    Because of what you and others have said, and thinking about how much my ability to walk and stand have deteriorated, I'm going to plan to keep the dreaded ECV in line with me. I'm not sure I could do the lines without it now anyway.
    Still waiting for the insurance company decision. I hope you have a great trip, too. And thanks for telling me about your 'borrowed' antibodies. The more I hear about actual real live people getting IVIG, the less I worry about side effects. I think it's a case of knowing a little too much for my own good. When you work in Pharma research, you tend to get really paranoid about adverse effects.
    Cool!hope you have a great healthy trip!
     

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