CVID question … no not COVID…

magicalfoursome

DIS Veteran
Joined
May 30, 2008
Anyone that has CVID - common variable immunodeficiency- visit Disney World since the pandemic? Or anyone with an primary immune disorder? Planning a trip for fall of next year. Everything is so uncertain for everyone but having an immune disorder complicates it further.
 
Last edited:
Any that has CVID - common variable immunodeficiency- visit Disney World since the pandemic? Planning a trip for next year and hoping the pandemic is long gone.

Hi there, I’m sorry I can’t be of any help. I do agree that you may get more help on the WDW boards, would you like it moved ?
 
No one with CVID has posted about being at WDW since it re-opened.
I think your medical team would give the best advice. They may have some specific guidance for you depending on which immunoglobulins are affected and the severity of your specific condition.
Since people with CVID typically have inability to produce antibodies to vaccines and to fight off infections, it will be important for you to discuss how to protect yourself with your team, no matter when you go. They may also have suggestions on when to go, which masks to wear or how to travel (or may suggest not going at this time at all), as well as what to do if you do become ill.
My DH, DD and I were at WDW in June 2021. When we first arrived, masks were required in public whether inside or outside. During our stay, it switched to masks required inside and on transportation, along with social distancing. The majority of people did follow the rules, but there were always a few who had pulled their masks down under their noses or off entirely when CMs could not see them.

There is no way to know when any of the current guidelines will be relaxed, but with a very compromised immune system, you will undoubtedly always continue to be doing something precautions.
 
No one with CVID has posted about being at WDW since it re-opened.
I think your medical team would give the best advice. They may have some specific guidance for you depending on which immunoglobulins are affected and the severity of your specific condition.
Since people with CVID typically have inability to produce antibodies to vaccines and to fight off infections, it will be important for you to discuss how to protect yourself with your team, no matter when you go. They may also have suggestions on when to go, which masks to wear or how to travel (or may suggest not going at this time at all), as well as what to do if you do become ill.
My DH, DD and I were at WDW in June 2021. When we first arrived, masks were required in public whether inside or outside. During our stay, it switched to masks required inside and on transportation, along with social distancing. The majority of people did follow the rules, but there were always a few who had pulled their masks down under their noses or off entirely when CMs could not see them.

There is no way to know when any of the current guidelines will be relaxed, but with a very compromised immune system, you will undoubtedly always continue to be doing something precautions.
Yes, of course I will discuss with my immunologist but it is too early to decide now as no one knows what will happen between now and fall of 2022. So I will just reserve the resort and hope for the best! Before covid, my doctor didn’t have any problem with me flying and going to WDW. I took meds with me in case I got sick, washed my hands frequently… etc….I guess I just wanted to hear from someone like me but it’s hard when you have a rare disease. Thank you so much for your response! Most people don’t know what CVID is and think I have Covid 🙁
 


I guess I just wanted to hear from someone like me but it’s hard when you have a rare disease.
Just anecdotal, but my guess is that people who are immunocompromised simply haven’t travel yet - or not to WDW. They are being very cautious. You may find some reports over the coming year as people venture out more. I say plan you trip, but be away of cancellation deadlines to get a refund if the situation warrants.

Rare diseases are a challenge! :hug:
 
Just anecdotal, but my guess is that people who are immunocompromised simply haven’t travel yet - or not to WDW. They are being very cautious. You may find some reports over the coming year as people venture out more. I say plan you trip, but be away of cancellation deadlines to get a refund if the situation warrants.

Rare diseases are a challenge! :hug:
So true! I guess I just really the have the itch to go to Disney and have fun and make more memories. I know we all want this pandemic to be over ASAP!
Thank you for understanding the challenges in having a rare disease.💗
 
Just anecdotal, but my guess is that people who are immunocompromised simply haven’t travel yet - or not to WDW. They are being very cautious. You may find some reports over the coming year as people venture out more. I say plan you trip, but be away of cancellation deadlines to get a refund if the situation warrants.

Rare diseases are a challenge! :hug:

This.

For myself... I am immunecompromised thanks to medication and an autoimmune disease. My doctor still has me on restrictions for going into the workplace [I can but there are Rules I have to follow, and he is prepared to write a letter saying I am not allowed into the workplace if certain workplace conditions are not met; I work in an office environment with no public contact and most days am able to work from home]. At home I am still pretty much sheltering, e.g. for groceries it is till pretty much curbside pickup not going into stores unless absolutely necessary. I have not been in a restaurant since before the pandemic.

For me, a trip to somewhere like Disney right now is out of the question, and will be for quite some time. Even our DCL Alaska cruise next summer is in question, though it may be doable [and we are really hoping it is, we have already pushed it from 2021]. To plan for that cruise we:

- booked the cruise on opening day to get the cheapest rate; we put down only the necessary deposit and it is fully refundable until much closer to sailing; the "paid in full" date in the spring will be a major go/no go decision point for us, because at PIF the deposit becomes non-refundable; we booked knowing full well it may get moved into 2023 or beyond;

- booked pre/post hotels that are fully cancelable until as close to checkin as possible (a few days before) and that have no upfront deposit; we have already booked them and will recheck prices often to see if there is a better deal between now and then as we expect prices to fluctuate somewhat [that said, the price has already gone up for new bookings!];

- researching and planning itineraries - what activities we want to do in Vancouver, port excursions on board, etc. We are not booking anything right now. But spending the time doing the researching is fun. We did a lot of research already planning for doing the cruise in 2021, and that info has just transfered over. We are updating some of it, since there are changes. We have decided we will go with DCL port adventures so that takes pressure off needing to book port excursions in advance -- we don't need to worry about that until we are PIF and our booking window opens, and at that point we will have made the first major go/no go decision. In the meantime we can decide WHICH ones we want to do :-) For pre/post in Vancouver we are researching options and looking for things where tickets can be bought close to or on the day of [so far not a problem for what we are choosing].

* for WDW you can book a "room only" reservation usually upto 499 days out - it requires a deposit of the cost of one night and (verify) is refundable upto a certain number of nights before checkin. When we travel to WDW, we usually book as far out as possible, even though at that point there are no discounts - that way we know we have a room for our preferred dates and preferred hotel. Then, when discounts do come out we see if they work for us, but even if they don't, we still have our booking. And, if the hotel books full, we still have our booking. And we can cancel or move it if needed, within the terms of the cancelation policy.

- Airfare. Normally we would book our airfare as soon as it became bookable, which is about 10-11 months out. We are waiting this time until closer to sail date. I haven't picked when we will book yet, am still deciding. Part will depending on airline change/cancel policies. Or we may pay the crazy extra $ for refundable tickets.

- Travel insurance. For a cruise, as a Canadian resident, it is not possible to purchase travel insurance that will cover a cruise right now since the government has a level 4 avoid all cruise travel advisory out. So that is a challenge. We are researching our options for when it can be purchased. But even for a land only trip, insurance is tricky right now, especially if you want any kind of covid-related coverage. e.g. what if we test positive during our trip and have to isolate/quarantine before returning home - can we get insurance that would cover our expenses for that situation ? I won't step foot inside the US without proper travel insurance, so this is an important factor for us.

Then there are things like planning for how to keep as safe as possible medically. So, which kind of mask to wear in what situation [eg travel/plane vs day to day], which is decided in consultation with my doctor. Practical things like: How to manage laundry. How to we transfer practices we use at home (eg outdoor vs indoor clothes) into practices when traveling [er, and this results in the need to do laundry, among other issues...]. Figuring out what I can keep and what needs to change from how I normally travel/cruise.

SW
 
This.

For myself... I am immunecompromised thanks to medication and an autoimmune disease. My doctor still has me on restrictions for going into the workplace [I can but there are Rules I have to follow, and he is prepared to write a letter saying I am not allowed into the workplace if certain workplace conditions are not met; I work in an office environment with no public contact and most days am able to work from home]. At home I am still pretty much sheltering, e.g. for groceries it is till pretty much curbside pickup not going into stores unless absolutely necessary. I have not been in a restaurant since before the pandemic.

For me, a trip to somewhere like Disney right now is out of the question, and will be for quite some time. Even our DCL Alaska cruise next summer is in question, though it may be doable [and we are really hoping it is, we have already pushed it from 2021]. To plan for that cruise we:

- booked the cruise on opening day to get the cheapest rate; we put down only the necessary deposit and it is fully refundable until much closer to sailing; the "paid in full" date in the spring will be a major go/no go decision point for us, because at PIF the deposit becomes non-refundable; we booked knowing full well it may get moved into 2023 or beyond;

- booked pre/post hotels that are fully cancelable until as close to checkin as possible (a few days before) and that have no upfront deposit; we have already booked them and will recheck prices often to see if there is a better deal between now and then as we expect prices to fluctuate somewhat [that said, the price has already gone up for new bookings!];

- researching and planning itineraries - what activities we want to do in Vancouver, port excursions on board, etc. We are not booking anything right now. But spending the time doing the researching is fun. We did a lot of research already planning for doing the cruise in 2021, and that info has just transfered over. We are updating some of it, since there are changes. We have decided we will go with DCL port adventures so that takes pressure off needing to book port excursions in advance -- we don't need to worry about that until we are PIF and our booking window opens, and at that point we will have made the first major go/no go decision. In the meantime we can decide WHICH ones we want to do :-) For pre/post in Vancouver we are researching options and looking for things where tickets can be bought close to or on the day of [so far not a problem for what we are choosing].

* for WDW you can book a "room only" reservation usually upto 499 days out - it requires a deposit of the cost of one night and (verify) is refundable upto a certain number of nights before checkin. When we travel to WDW, we usually book as far out as possible, even though at that point there are no discounts - that way we know we have a room for our preferred dates and preferred hotel. Then, when discounts do come out we see if they work for us, but even if they don't, we still have our booking. And, if the hotel books full, we still have our booking. And we can cancel or move it if needed, within the terms of the cancelation policy.

- Airfare. Normally we would book our airfare as soon as it became bookable, which is about 10-11 months out. We are waiting this time until closer to sail date. I haven't picked when we will book yet, am still deciding. Part will depending on airline change/cancel policies. Or we may pay the crazy extra $ for refundable tickets.

- Travel insurance. For a cruise, as a Canadian resident, it is not possible to purchase travel insurance that will cover a cruise right now since the government has a level 4 avoid all cruise travel advisory out. So that is a challenge. We are researching our options for when it can be purchased. But even for a land only trip, insurance is tricky right now, especially if you want any kind of covid-related coverage. e.g. what if we test positive during our trip and have to isolate/quarantine before returning home - can we get insurance that would cover our expenses for that situation ? I won't step foot inside the US without proper travel insurance, so this is an important factor for us.

Then there are things like planning for how to keep as safe as possible medically. So, which kind of mask to wear in what situation [eg travel/plane vs day to day], which is decided in consultation with my doctor. Practical things like: How to manage laundry. How to we transfer practices we use at home (eg outdoor vs indoor clothes) into practices when traveling [er, and this results in the need to do laundry, among other issues...]. Figuring out what I can keep and what needs to change from how I normally travel/cruise.

SW
I hope you are able to go on your cruise next summer. I would love to cruise to Alaska. We are not planning to go to WDW until October of 2022, however we rent DVC points thru someone I know. In order to get the resort and room type we want we need to reserve it 11 months out which is this November.
I agree with you that I would never go to Disney right now. I am also taking precautions and wearing masks indoors. Please stay safe and hopefully soon this pandemic will be over.
 
Boy, do I understand the desire to go home to WDW!

Lately, I have been scratching my "itch" by going through all of my photos (49 years worth of Disney memories is a *lot* of pictures!) and I am going to create an actual book for myself of my favorite pictures. That alone has kept me busy, as I get everything scanned into digital from before 1997 (first digital camera) and start the painstaking process of retouching, and sorting and then ultimately picking out my favorites. I'm thinking about making "chapters" (probably just a few pages each, but... ) like Memorable Meals (including a page that features our daughter's annual Birthday Lunch at The Plaza in MK over the years) and Disney After Dark, with some of the fantastic photos we have gotten over the years during after-hours events, or right at Park close when things start to slow down and empty out. I have enough pictures of Disney Ducks, squirrels and other assorted critters to do a whole Wonderful World of Wildlife section, and I think a Holidays Around The World chapter might be fun, with all of the Christmas trees and decorations, as well as the Halloween decorations, etc. Pretty sure I could do an entire chapter just on *cupcakes* alone! I've also been photographing our Resort mugs, and then we are donating them, but that could also be a chapter in and of itself!

I haven't been diagnosed with anything like CVID, but I do have a couple of issues that fall under the autoimmune/immunocompromised umbrella. My doctors have told me absolutely no leaving the house without a mask + filter, or double-masked. No dining out, not even outside (too hot here anyway...) and no shopping, no movies, no nothing except *more* doctors appointments and tests and possibly surgery (long story). It's OK, because I had not been anywhere except to doctors offices and the hospital since mid-January of 2020. I have not been inside of a store, not gone to a movie, not done anything more exciting than a Target drive-up order (my medical team insists that I roll all windows *down* for drive-ups and drive-throughs, to allow all air to flow through the car, and not circulate inside the car, and to leave the windows down for a full minute after any contact with others is complete) and I am so stir-crazy it isn't even funny. We go for long drives sometimes on the weekends, but lately I have had too many muscle spasms to even do that comfortably.

Usually by this time of year, I'm packing and cleaning and getting ready for our fall trip; our winter trip is typically the first week of January. (in the spring, we typically escape up to the Branson/Table Rock Lake area to our favorite lodge up there, and in the summer, we just hibernate in the A/C! LOL). If I could, I would go to WDW *tomorrow*, heat, crowds, summer showers be darned. Not kidding when I say there would be a mamabunny-shaped hole in my front door, and nothing would stop me if my medical team gave me the go-ahead!

I think it's going to be a while for those of us who have to be more careful. I also hold hope that we *will* be able to return to life (relatively) as it was pre-pandemic; it's just clearly going to take longer than we all hoped it would.
 
I second the motion to consult with your doctor. DD and I are going next week, trip booked before the new wave of COVID exploded in Florida, and even though I have a relatively healthy immune system and are fully vaccinated I'm concerned about our trip. I'm just hoping my issues don't end up sending me to the ER like the last trip! But I understand the desire to go to WDW - DD and I used to go often, and I haven't been in years now.
 
Boy, do I understand the desire to go home to WDW!

Lately, I have been scratching my "itch" by going through all of my photos (49 years worth of Disney memories is a *lot* of pictures!) and I am going to create an actual book for myself of my favorite pictures. That alone has kept me busy, as I get everything scanned into digital from before 1997 (first digital camera) and start the painstaking process of retouching, and sorting and then ultimately picking out my favorites. I'm thinking about making "chapters" (probably just a few pages each, but... ) like Memorable Meals (including a page that features our daughter's annual Birthday Lunch at The Plaza in MK over the years) and Disney After Dark, with some of the fantastic photos we have gotten over the years during after-hours events, or right at Park close when things start to slow down and empty out. I have enough pictures of Disney Ducks, squirrels and other assorted critters to do a whole Wonderful World of Wildlife section, and I think a Holidays Around The World chapter might be fun, with all of the Christmas trees and decorations, as well as the Halloween decorations, etc. Pretty sure I could do an entire chapter just on *cupcakes* alone! I've also been photographing our Resort mugs, and then we are donating them, but that could also be a chapter in and of itself!

I haven't been diagnosed with anything like CVID, but I do have a couple of issues that fall under the autoimmune/immunocompromised umbrella. My doctors have told me absolutely no leaving the house without a mask + filter, or double-masked. No dining out, not even outside (too hot here anyway...) and no shopping, no movies, no nothing except *more* doctors appointments and tests and possibly surgery (long story). It's OK, because I had not been anywhere except to doctors offices and the hospital since mid-January of 2020. I have not been inside of a store, not gone to a movie, not done anything more exciting than a Target drive-up order (my medical team insists that I roll all windows *down* for drive-ups and drive-throughs, to allow all air to flow through the car, and not circulate inside the car, and to leave the windows down for a full minute after any contact with others is complete) and I am so stir-crazy it isn't even funny. We go for long drives sometimes on the weekends, but lately I have had too many muscle spasms to even do that comfortably.

Usually by this time of year, I'm packing and cleaning and getting ready for our fall trip; our winter trip is typically the first week of January. (in the spring, we typically escape up to the Branson/Table Rock Lake area to our favorite lodge up there, and in the summer, we just hibernate in the A/C! LOL). If I could, I would go to WDW *tomorrow*, heat, crowds, summer showers be darned. Not kidding when I say there would be a mamabunny-shaped hole in my front door, and nothing would stop me if my medical team gave me the go-ahead!

I think it's going to be a while for those of us who have to be more careful. I also hold hope that we *will* be able to return to life (relatively) as it was pre-pandemic; it's just clearly going to take longer than we all hoped it would.
So much fun going thru pictures and organizing them. So many wonderful and magical memories made in Disney.
Your doctors are much more strict than mine.
in the beginning of the pandemic I did not go anywhere for six months. Now I have been to stores, and restaurants but I wear a mask.
I have also returned to work but I am in an office with hardly anyone and I do not see the public.
wouldn’t it be great if this pandemic ended and we could just go to Disney World and celebrate! We will get there! As you said it may take a while but we will be back!
 
I second the motion to consult with your doctor. DD and I are going next week, trip booked before the new wave of COVID exploded in Florida, and even though I have a relatively healthy immune system and are fully vaccinated I'm concerned about our trip. I'm just hoping my issues don't end up sending me to the ER like the last trip! But I understand the desire to go to WDW - DD and I used to go often, and I haven't been in years now.
Have a magical and safe trip!!
 
I also have CVID, but haven't been to DW since the pandemic started. I am a West Coaster, but have managed to take several trips this year and late last year. We have been to San Diego 2 x, Denver, San Francisco 2 x and next week an Alaska Cruise. I have discussed extensively with both my immunologist, rheumatologist and infectious disease docs. They have all had reservations, but we have taken all the precautions we can. Except flying to an from the destination, we only do outside activities. I double mask on planes and wash hands like crazy. Traveling is so important to me, we figured out how to make tt work. We also have a Disneyland trip next month (September), so I can share my experience after that, if you are interested.
 
I also have CVID, but haven't been to DW since the pandemic started. I am a West Coaster, but have managed to take several trips this year and late last year. We have been to San Diego 2 x, Denver, San Francisco 2 x and next week an Alaska Cruise. I have discussed extensively with both my immunologist, rheumatologist and infectious disease docs. They have all had reservations, but we have taken all the precautions we can. Except flying to an from the destination, we only do outside activities. I double mask on planes and wash hands like crazy. Traveling is so important to me, we figured out how to make tt work. We also have a Disneyland trip next month (September), so I can share my experience after that, if you are interested.
Thanks so much! I was in San Diego for vacation and I loved it and I also love Huntington Beach and DL. I am happy you are traveling and still taking precautions. I am traveling to Maine tomorrow for my first vacation since the pandemic. We are driving and planning outdoor activities. Have a wonderful time on the cruise and in DL! Yes let me know how your trip goes!
 

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