New Trip, New Diagnosis.

[Iron Mouse]

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[jmartinez1895]

The ECV should help you a lot. I would suggest renting form an outside company, that way your will have one for sure. I would hate for your to get tot the park only to find out they have all been rented out. Another plus of renting off site is that you can use it on the buses and at your resort. As for help with your immune system, go to guest services and explane your condition they will be able to help you out. I'm sending you a private message.

 

[Tiggerish]

Each park has a first aid station with private cots areas that you could use to do your breathing treatments.

 

[SueM in MN]

Is it better to rent from the park or an outside company?

I agree it is better to rent from off-site.
Click the link in my signature to get to the disABILITIES FAQs thread. Post #2 of that thread has information about renting ECVs.
It is less expensive to rent from off-site than from the parks. Plus, you will have it to use in the resort too.

I still have yet to continue to read around the boards but what are some of the things that would be recommended. It will be a whole family experience again and we would like to hit two parks this time instead of one. 4 days and 3 nights is our time frame. What are some of the other things I could do that could make our trip fun for everyone. I really want my daughter to have very memorable fun trips. She still remember's our past two trips!

For a small child, MK and the Studio would probably be the most small child centered. I’d suggest looking at the attractions at the different parks and then decide which 2 you think have the most she would like.
Those 2 would be my suggestions though.

Will they be able to accomodate me regarding my immune issues? I always wear my facial mask when out of my home but it is not a miracle germ stopper. Is there a way that instead of waiting in line I could wait in a separate area to get into a ride?

There are some (not all) attractions with a separate waiting area, which is usually just a separated out area of the regular waiting area. This is for the things like shows. With an ECV, you will be in those areas anyway.
For rides, there are not really any separate areas. I would suggest you have some of your family in front and some behind you as a ‘buffer’. Most germs don’t travel more than 3 feet from the source, so that would keep germs from coughs and sneezes away from you for the most part.
You may want to talk to your doctor about what circumstances you would wear the mask for. YOu may find that you actually only need it in a very few circumstances (like on the plane).

Are there designated areas where I can get my breathing treatments or can I just find an outlet and go?

Outlets are not hard to find, but most people go to First Aid. THere is one in each park and they can provide a private place, plus store equipment/supplies for you.

I get very ill when I am in extreme heat or cold, are there accommodations for that as well?

Yes and No.
If it is warm or cold outside, that is going to be a problem as much when you are going between attractions. So, you really need to plan for that outside of the lines.
The air conditioning can be cold and it is more a problem for some people with going constantly in and out of the heat and cold.
Post #6 of the disABILITIES FAQs thread is about Guest Assistance Cards, which are the way that need for accommodation is communicated to Cast Members.

The previous times we have been we stayed on property and we used the bus services. Would it be wiser to use our own car to get to the parks or the bus service this time? I have so many questions and concerns and not enough time to write them all down! Any advice is appreciated. Thank you so much I am sorry this message is so long!

A car might work better for your needs. Just make sure when renting an ECV that they know you need one that can be broken down for car transport, make sure you have someone in your party who can lift it into the car and that you have a car with a big enough storage space to put it into.

 

[Iron Mouse]

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[Nanajo1]

I think renting from an off-site vendor would be better for you. With your immunity issue you would be able to wipe it down and know it was cleaned.
Have a great trip.

 

[gamomof2]

Our 15 year old daughter also has CVID. She is on subq every week so we always plan our visits starting the day after infusions. She does her nebs in the resort but we have an inhaler for in the parks. This last year we had a transport chair bought for her and it is very narrow and easier to maneuver than a wheelchair. She does not wear a mask because the air is open and she has not had a transplant. She does wear one if she is on an airplane because of the recycled air. She goes to WDW at least twice a year and tends to have to rest halfway through the day. If she's doing EMH then we sleep in late in the morning. We ask for our condo to be near transportation and near the elevator. We use the bus service to the parks and collapse the chair.

She was diagnosed at 2 years old and started going to WDW at 8 years old. She loves it but we definitely have to plan out our days and go slow and steady.

 

[Iron Mouse]

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[gamomof2]

We've also scoped out the nearest hospital and make sure we know which Immunologist is on call if something should happen. Also she wears a medic alert necklace so that they can roam the park without us and if something should happen then the First Aid nurse calls us. We will be going this year during July which is a first for us. I'm sure it will be a different schedule to keep because of the humidity and being more independent with her 17 year old sister I don't think they'll use the chair much so it will make for short days. We're booked into the Bay Lake Towers so they can use the monorail to come and go. She is also on Singulair which tends to help with the breathing.

Good luck and I hope the treatments are starting to kick in. Sometimes it can take up to 6 months or so for the medicines to take effect. If you haven't, contact the Immune Deficiency Foundation (www.primaryimmune.org) and they can send you free patient publications that will really help. Plus there is information on the website that you can read now.

P.S. My husband also has CVID.