Dialysis patient with question about renting points

[sweetb]

Thanks for the tips. I have a lot to consider. Trying to balance cost with cleanliness and also trying to pick a place a think will be fun for the kids. We don't have a lot of money and don't vacation every year. I am using some tax refund money for this trip as well as a little bit of savings. This may be the last trip where they are little enough care about the characters which I think is so cute.

Any feedback for the swan and dolphin? They have characters meals and extra magic hours.

 

[WsPrincess]

Thanks for the tips. I have a lot to consider. Trying to balance cost with cleanliness and also trying to pick a place a think will be fun for the kids. We don't have a lot of money and don't vacation every year. I am using some tax refund money for this trip as well as a little bit of savings. This may be the last trip where they are little enough care about the characters which I think is so cute.

Any feedback for the swan and dolphin? They have characters meals and extra magic hours.

I have not stayed there but they do have some good rates. The biggest factor for us was you cannot get Magical Express when staying there. For us that made the deal of the room not so good since we would need to pay to get to the resort or rent a car.

 

[sweetb]

We are driving to Florida from New Jersey to save money since airfare would have cost us over a thousand dollars. So we will have a car. Plus we want to go to Sea World and Universal so having a car is a must.

 

[CarolAnnC]

May I suggest that you might want to hop over to the DIS's DISabilities board? You have a very good chance of finding lots more folks with the same type of issues as yourself, and that would be a good place to inquire about the regular Resorts and the cleanliness issues for you.

Best wishes, I hope you are able to make all the arrangements so the trip can happen for you!

 

[DoryDorito]

Perhaps. Generally speaking if a person is in irreversible renal failure (they would need to be to be listed for a transplant) and requires dialysis their blood pressure is too low for what's called CRT which uses a persons own circuit (Blood Pressure) to cleanse the kidney.The other way which it sounds like she would require is done every other day @ a Dialysis center and would take anywhere to 3-5 hrs. completing each treatment from start to finish.It's very taxing on the body and again generally takes the better part of a day to
recover.

Oops

 

[DoryDorito]

We are driving to Florida from New Jersey to save money since airfare would have cost us over a thousand dollars. So we will have a car. Plus we want to go to Sea World and Universal so having a car is a must.

Can I ask, because I'm not understanding, does your doctor support you going that far from home if you're on a recipient list? I'm curious because most doctors don't encourage travel in case you're lucky enough to get that call, especially in the case of a cadaver kidney. Perhaps I'm just more familiar with doctors that do things differently.

 

[DoryDorito]

Also, look into art of animation. It's new and plenty big. The one resort I'd caution you about is CBR, we dealt with a lot of mold issues during our last stay there. But generally, most resorts are very clean.

 

[JLitfin]

Can I ask, because I'm not understanding, does your doctor support you going that far from home if you're on a recipient list? I'm curious because most doctors don't encourage travel in case you're lucky enough to get that call, especially in the case of a cadaver kidney. Perhaps I'm just more familiar with doctors that do things differently.

I was thinking the same thing. My father is once again on the kidney transplant list, he received a kidney about 10 years ago and it's starting to fail so he was placed on the list again for a new kidney. The doctors here in Baltimore has informed him not to travel more then 3 - 3 1/2 hours from his home. As soon as he receives the call he has to basically drop eveything and head to the hospital and hope the kidney is a match so they can do the transplant. When he received his kidney last time, we had him at the hospital within several hours of the call and they finally did the transplant after all day of waiting for the medical team to test the kidney in order to give it a go ahead with the transplant. The doctors wanted him at the hospital to start as soon as they receive the go ahead to begin. He won't even travel to Ocean City, MD which is only about 3 hours away. I guess I don't understand how you can go from NJ to FL and be on the transplant list in case you receive the call to report to the hospital. With my dad he has to be at the hospital within 3 hours of receiving the call.

My prayers go out to you and hope you receive your new kidney sooner then later, I know what you are going through, I see it everyday with my dad.

 

[DoryDorito]

I was thinking the same thing. My father is once again on the kidney transplant list, he received a kidney about 10 years ago and it's starting to fail so he was planned on the list again for a new kidney. The doctors here in Baltimore has informed him not to travel more then 3 - 3 1/2 hours from his home. As soon as he receives the call he has to basically drop eveything and head to the hospital and hope the kidney is a match so they can do the transplant. When he received his kidney last time, we had him at the hospital within several hours of the call and they finally did the transplant after all day of waiting for the medical team to test the kidney in order to give it a go ahead with the transplant. He won't even travel to Ocean City, MD which is only about 3 hours away. I guess I don't understand how you can go from NJ to FL and be on the transplant list in case you receive the call to report to the hospital. With my dad he has to be at the hospital within 3 hours of receiving the call.

My prayers go out to you and hope you receive your new kidney sooner then later, I know what you are going through, I see it with my dad.

Like labor. .

Like I mentioned, I just don't understand because most doctors do things differently. I'm sorry about your dad. Everyone I know one a recipient list has to get to the hospital ASAP. I hope your dad gets his kidney soon

 

[goofieslonglostsis]

May I suggest that you might want to hop over to the DIS's DISabilities board? You have a very good chance of finding lots more folks with the same type of issues as yourself, and that would be a good place to inquire about the regular Resorts and the cleanliness issues for you.

Best wishes, I hope you are able to make all the arrangements so the trip can happen for you!

Agree with the knowledge on the disABILITIES board, but can predict at least one remark/quetion;

- if germs are such a HUGE thing that you are so obsessive about room and resort, it would result in questions about any and all parktime. Any public place is crawling with germs and a public place with tens of thousand of folks, a very high percentage of them being kids, WDW will be crawling with kids. I'm very familiar with immunosuppresssive medications but rule of thumb here is that crowded public places are "not an option" way before a hotel room would ever be (the first can not be controlled, where the latter could even be if need be when on intensive chemo requiring even seperate rules for familymembers within the same rule).

I have to be honest, I have a feeling that you might very well either be taking the "needs to be cleaned or else" too far because of fear and/or improper education (or the ilness being a great "excuse" for already simmering OCD to get out of hand?) or you are taking it too far with persuing the trip to begin with. After all; any and all room cleanliness can be controlled when simply taking some time out for another member in the party to do your own cleaning routine you would use at home once to make sure the room is at the same level as it is at home.

 

[OrangeCountyCommuter]

We are going to stay for about eight or nine days. I am really hesitant to stay at an older value resort. I am a clean freak and I need a nice, clean hotel room that is on the newer side. And when I say clean freak, I mean OCD clean.

Given the sheer number of guests at WDW, probably no WDW hotel will meet with the standards of OCD clean. I mean, most standard rooms take 15 to 20 minutes to clean, and most turn daily. Even with daily housekeeping, that doesn't allow for much deep cleaning when you have a high volume of guests in and out. And the DVC resorts usually are cleaned only a couple of times a week, so there is bound to be some normal wear, tear and dirt just from so much usage.

They don't shampoo carpets between each guest. They give the floor tiles a quick mopping, but nothing I would call a thorough cleaning. And I'm sure it is probably true of most hotels/motels, not just Disney. I do understand the need for someone with health issues to be as germ free as possible, especially with a possible transplant on the horizon at any time, really any high traffic volume resort is likely to have some issues as far as cleanliness. Add to that the higher percentage of young children versus a hotel in other locations, and there is bound to be more general wear in the room than in a hotel used mostly by business clients.

DVC is NOT for you. We've never, in twelve years of ownership, walked into an OCD clean DVC room. We've never walked into a room as clean as any other hotel room we've used over the past twelve years. They are clean, but certainly not OCD clean.

I am going to be BRUTALLY BLUNT!

(SORRY but the truth is painful)

If the OP is truly this OCD about clean, please don't do this trip. I travel weekly I stay at ALL type of hotels from 5 star to 1 star. Disney hotels are not really any better or worse then any other hotel They meet the industry standard.

The Swan/Dolphin are NO cleaner then the value resorts the OP is afraid of....

But I think the OPs first stop should be her medical team not the DIS.

 

[patsal]

If $$ is an issue, the universal hotels are much more expensive than the WDW ones.

 

[sweetb]

I am going to try and take a deep breath here and explain the situation. I came here because I know nothing and I mean zero about Disney hotels. I have heard or shall I say read posts here on this very board where folks have said that the value and some moderate resorts are on the old side and some resemble a motel type of environment. Let me be more specific about what I am afraid of. I am afraid of old carpeting that may have mold which will make me just about as sick as anyone else except for my body reacts harsher to the same things that may make a healthy person sick. I am afraid the rooms there are not being cleaned as often as other resorts off site that cost a lot less money. I am concerned about carpets and bathrooms not being cleaned well and possible bad smells that sometimes come with a motel type of room.

Now I would love to hear if this is true, false or if there are some disney resorts that may be like that but others that are better. Again, I know nothing. That is why I am here.

As far as traveling. I have no idea who your doctors are but my dialysis unit and doctors encourage travel. In fact I have been to five dialysis centers in the six years I have done dialysis and they all encourage travel. There are even posters in the dialysis unit with big bold print saying things like, "You CAN be on dialysis and travel!" Other posters say, "Dialysis at the Beach!" and Dialysis cruises. You cannot expect a person on dialysis to just live under a rock for years because they are sick. We have families who also need to live normal lives as well.

I know a little about kidney transplants as I have already had one and I've been sick most of my life. I found out I had kidney disease when I was 15 years old. I went on dialysis the first time when I was 20 and it took me FIVE years to get a transplant. In fact five years is an average wait time in the NJ area. My transplant lasted 12 years. With transplants, you never know how long they will last as most don't last forever. I started dialysis for my second time about a year ago and I probably have another four year wait until my next one. Maybe longer.

If I got the call while in Florida I would get on the next flight home. It's only a few hours plane ride from Florida to Jersey. Yes they want you to get there right away but they don't do the surgery for at least 8 to 10 hours from the time you get the call.

Maybe it's just me, but it sounds like people are getting a bit testy for no reason. Who cares if I have OCD anyway? I have been through hell and back so I think it's ok for me to be asking these questions. I want to stay in a place that is best for me and my kids. Just thought I could get some advice from those who have been to Disney a lot like the folks on this board. I don't need to be told that I shouldn't be going on vacation as if I don't know enough about the disease I have been living with for 23 years.

Thanks to those who offered kind words and helpful suggestions. I really do appreciate anyone who takes the time to offer helpful suggestions.

 

[WsPrincess]

If we are talking strictly about clean, I have never found any Disney hotel to be more or less dirty than others. I have stayed in a lot of places and to be honest, I have had a nasty room in one of the nicest hotels. I think that Disney does the same as other hotels. The values and moderates do have a more motel feel but to me that is because of the outside hallways. I have stayed at 3 different moderates over the years and all where well cleaned and nice.

I do know you can request a VIP cleaning through Disney for medical reasons but the DisAbilities board could help more with that though it causes more issues for some people since the carpet can be damp (for me the smell of damp carpet is GROSS even at my own house). I think you are starting in the right place though there might be other boards where people can offer more advice since this is a DVC board.

As I said upthread, my friends just stayed at All Stars and were one of the first to stay in a renovated room. It was beautiful! I think you just have to do what you feel most comfortable with.

 

[sweetb]

http://www.kidney.org/atoz/content/traveltip.cfm

Just in case folks want to truly be informed about traveling while on dialysis and waiting for a transplant. It is usually best to be informed before telling a sick person they should be checking in with their doctor instead of checking into Disney. Nothing better than a totally healthy person telling me I should stay home instead of enjoying a vacation with my very young children.

 

[Missyrose]

Have you thought about renting a house or a condo at Windsor Hills? There are many that are Disney themed and you could probably get the owner to arrange for a deep clean for you before you checked in. The cost would be around the same as a Disney value resort, maybe even a little less. Since you'll have your car, getting to and from the parks shouldn't be a problem. Just an idea.

 

[jekjones1558]

I am going to try and take a deep breath here and explain the situation. I came here because I know nothing and I mean zero about Disney hotels. I have heard or shall I say read posts here on this very board where folks have said that the value and some moderate resorts are on the old side and some resemble a motel type of environment. Let me be more specific about what I am afraid of. I am afraid of old carpeting that may have mold which will make me just about as sick as anyone else except for my body reacts harsher to the same things that may make a healthy person sick. I am afraid the rooms there are not being cleaned as often as other resorts off site that cost a lot less money. I am concerned about carpets and bathrooms not being cleaned well and possible bad smells that sometimes come with a motel type of room.

Now I would love to hear if this is true, false or if there are some disney resorts that may be like that but others that are better. Again, I know nothing. That is why I am here.

As far as traveling. I have no idea who your doctors are but my dialysis unit and doctors encourage travel. In fact I have been to five dialysis centers in the six years I have done dialysis and they all encourage travel. There are even posters in the dialysis unit with big bold print saying things like, "You CAN be on dialysis and travel!" Other posters say, "Dialysis at the Beach!" and Dialysis cruises. You cannot expect a person on dialysis to just live under a rock for years because they are sick. We have families who also need to live normal lives as well.

I know a little about kidney transplants as I have already had one and I've been sick most of my life. I found out I had kidney disease when I was 15 years old. I went on dialysis the first time when I was 20 and it took me FIVE years to get a transplant. In fact five years is an average wait time in the NJ area. My transplant lasted 12 years. With transplants, you never know how long they will last as most don't last forever. I started dialysis for my second time about a year ago and I probably have another four year wait until my next one. Maybe longer.

If I got the call while in Florida I would get on the next flight home. It's only a few hours plane ride from Florida to Jersey. Yes they want you to get there right away but they don't do the surgery for at least 8 to 10 hours from the time you get the call.

Maybe it's just me, but it sounds like people are getting a bit testy for no reason. Who cares if I have OCD anyway? I have been through hell and back so I think it's ok for me to be asking these questions. I want to stay in a place that is best for me and my kids. Just thought I could get some advice from those who have been to Disney a lot like the folks on this board. I don't need to be told that I shouldn't be going on vacation as if I don't know enough about the disease I have been living with for 23 years.

Thanks to those who offered kind words and helpful suggestions. I really do appreciate anyone who takes the time to offer helpful suggestions.

OP, I do not know why some posters feel the need to help you decide whether or not you should travel. Your question was where you could stay that would be most likely to be clean. You did not ask us to weigh in on whether or not you should vacation at all.
I hope you are able to find a place that will be clean enough that you can enjoy your vacation. I applaud you for living life to the fullest, even if that is a lot more complicated for you and your family than it is for many others. Your kids are lucky to have you as a parent. Blessings and hugs to you and your family! I think that the pixies will reward your research efforts!

 

[sweetb]

Thank you WsPrincess, Missyrose, and jekjones1558 I appreciate your suggestions and will check them out. I guess I am in the wrong spot now that I understand more about how points need to be rented well in advance of a vacation. I will check out some more threads however I must say I am a bit hesitant to ask any more questions after feeling attacked about my illness. Just very shocked and saddened. But thanks again for your helpful responses and nice comments! Almost my entire life has been a struggle and I would never wish it on anyone but boy do I wish some folks would think before they speak and think about what it would be like to walk in another person's shoes!

 

[Sammie]

I have stayed at one time or another all the Disney resorts and have had various levels of cleanliness. I have never seen a Disney room, irregardless of it being a value resort, deluxe or DVC that I felt was as clean as my home.

As to carpet and mold, being that mold is a very serious issue in Florida, I would recommend booking any resort that has a complete rehab lately where they got new bedding, new carpet and new drapery, etc.

Some of the buildings at SSR, Congress Park and parts of the Springs have undergone a complete redo.

I think some of the rooms also at POR have recently been redone.

Some rooms at the Wilderness Lodge have been redone as they work to do the entire Lodge, not the DVC section though.

Also Art of Animation is new.

Honestly I find nonDisney hotels, to be cleaner than Disney, and I find Disney resort rooms cleaner than DVC due to the fact they are not cleaned daily.

I think renting a house is a great suggestion and you can really get a some great deals and maybe find one near your treatment center and probably get one without carpet.

 

[mrsksomeday]

Start here:

Special Reservations line: (407) 939-7807 Call them, explain your situation, and ask about a VIP cleaning. They can put on brand new bedding, clean the carpets, change the air filter etc.

I suggest calling during regular business hours. Good luck .