a cruise??? yikes

[mom3sonstt]

DH has gotten it in his head recently that we may try to do a cruise next year. I've always had mixed emotions on this - I don't think we are "cruise" people. He ordered the DVD and we watched it last night and he kept commenting that he didn't plan to dress up - he wears shorts on vacation. For him - shorts is khakis and a polo shirt - so I guess its not gym shorts and an undershirt. But apart from the dress "code", I am concerned about getting around. I have started using a scooter at WDW. I don't use one at home, but I don't over-exert at home either. If I go shopping I "have" to have a shopping cart to lean on. If we go to a mall I rent a shopping cart if they have them. I don't know how i would work on a cruise. I see there are several floors - I think I have read there are very few elevators. I don't know how I would do walking up and down several flights of stairs throughout the day. But I also know if there are few elevators there will be high demand for them - with a scooter it would be hard using a crowded elevator. And to me the rooms look tiny. I don't know where a person would store a scooter without falling over it all the time. And I have no idea how he thinks I will be able to take and store my dialysis stuff. Speaking of which - when we go to WDW I have my supplies shipped to the resort ahead of time. Is there anywhere that they could be shipped to for a cruise? The supply company needs an actual shipping address that is verified before they can process the order. But it goes to my name and reservation dates.

I don't know - I think DH is nuts and a cruise needs to wait until I have received a kidney, don't need to do dialysis, and hopefully have built my stamina back up to not need a scooter either. But am I wrong? Would it be easier to get around than I am anticipating?

 

[maroo]

I am thinking you should call Disney Cruise Line. I am pretty sure they have handicapped accessible cabins that have room to store a wheelchair. Not sure about an ECV and I am not sure what level of handicap is required to book one of those rooms.

I have heard that you do have to provide some sort of proof for the cruiseline because of the difference in room size and limited availability of the HA rooms. ??

But I am not sure.

Hopefully someone on here will know, though!

 

[CoffeeCup]

We've never been on a Disney cruise, if that is the cruiseline you are asking about, but Carnival can take care of your needs. Considering how helpful Disney World is with disabilites, I think Disney cruises would work for you also. You can get a handicapped cabin that gives you room for your scooter, or perhaps you could manage with a walker so that you could lean on it. My mom used a rollator for years so that she had stability from the walker and a seat she could turn down if she got tired. It folds and doesn't require much space to store when you aren't using it. On Carnival the dress code is rather casual. Men can wear nice shorts and a nice t-shirt for dinner in the main dining room and kakhis and a shirt or even with a polo shirt for elegant night. Some men wear suits and some a shirt and tie with dress pants, but no one has to dress up even that much. They would frown on gym shorts and a sleeveless t-shirt for men in the dining room, but they seem to let them in regardless. There's always the buffet where you can wear anything you wish, even a swimsuit with cover-up. I wouldn't worry about the dress code if your DH is willing to cooperate a little and not wear gym shorts to dinner in the dining room. Jeans are acceptable, and he might agree to wearing those. I would suggest you contact the disability department of the cruiseline you are interested in using, and I feel sure they can take care of your problems. I didn't think I would enjoy cruising, but we've taken at least one cruise a year since we started. It can be as relaxing or as busy as you want it to be, and you get a great value for your money.

 

[goofieslonglostsis]

When it comes to accessibility, DCL compares pretty well to WDW. As far as the scooter goes; book yourselfs a handicapped accessible stateroom. You'll need to file out a form with your needs, aids you use and have a doc sign this. Not only will that supply you with the room for the ECV, but you will find it a heaven sent to have an accessible bathroom for those days you are drained after dialysis. More space to move around, grabbars, sit down shower (depending on type of cat you book and spec. stateroom they even have some staterooms with both a sit down shower and tub!). Also these rooms come with an alarm system, where you can simply push a button and a CM will come and help you out in case of an emergency. This system can be enabled and disabled by guest services on request. Part of that also is a second phone in the bathroom.

To give you an idea; my friend and myself did a 7 night last september in a cat 6 stateroom. She uses a manual wheelchair, I a powerchair to get around outsite of the room and a manual inside of the room. We had them remove the small table to allow more moving space. We had more than plenty space to move around with 2 of us in a chair and one chair 'hanging out', and guests with that. Both of us had a lot of medical supplies with us, combined with all the gift stuff, stuff we bought in the US etc. Don't know about the other cat. staterooms, but the cat. 6 accessible stateroom has a pretty huge -for cruising matters that is- "walk in" closet. We stored 5 suitcases, 3 carry ons next to each other and the stateroom host put the coffee table also in there on it's side.

Common places of the ship tend to be on a good accessible level. You might have to use a different door to get out onto the deck (not all have electric buttons and/or work), and/or have somebody help but that are minor things. Elevators are small, but a regular ECV does fit -tip; practice backing up in a straight line while watching out for folks so desperate to get onto an elevator they seem to want to run you over while getting out -.

Hallways can be a bit tight, especially when stateroom hosts are doing their work and the carts are out, but they are wide enough to let you pass. As soon as any stateroom host -or any other CM for that matter- see you coming, they'll move their stuff out of the way if need be.

Medical services on board also are , although that is something I still wouldn't advice anybody to try it out.

Dining, activities; don't worry! They'll work with you. With an ECV you probably wont be able to keep it right at the table in the dining room (size problems), but the CM's are more than happy to work with you, allowing you to drive right upto the table and driving the ECV to a better suitable place and vice versa if you're done and/or need to go to the bathroom. If worried about location of the table; simply go check it out after embarkation. If you find it's not accessible for you, it's easiest to have it changed at that moment, also saving you the flustered and rushed feeling of experiencing that on the first night with the dining room filling up with folks.

A mobility disability and/or being on dialysis aren't a 'no go' for cruising when those same disabilities still allow you to do WDW with aids and/or help. You might want to get yourself a copy of the Open Mouse. It's a book that's all about how WDW and DCL works for those with disabilities. It'll be a great info-source and put a lot of your worries to bed.

Same as with your supplies. When working with DCL, it'll work itself out. You're not the first one, and definately wont be the last. Cruising is a way of travel a lot of folks with a disability love, because this is a way of travel that suits many needs so easily. If you want more info about cruising other than DCL; go and check out http://boards.cruisecritic.com/forumdisplay.php?f=190 This is a part of the CruiseCritic Board dedicated to cruising with a disability. Lots of info about cruising with lots of cruiselines.

The only real downside to this we've experienced? Having a huge verandah but not being able to reach it independantly caused by the heavy opening system. (even perfectly healthy cruisebuddies found it somewhat of a task opening those slide doors)

 

[peemagg]

I took my scooter on our cruise this past March. I can't walk very far (or so I thought), most days. Once my scooter was in my room, it never came out. I did fine with just a cane. On the Carnival ship I was on there was 3 banks of elevators. The 2 main banks of elevators (there was 6 elevators here), were impossible for me to get on with my scooter. We found that the 2 glass elevators were the easiest for us to get on and used them the most. I found most of the ship very accessible for me.

As far as dress code, as was said earlier, each cruiseline has its own definition of their dress code. Some are more dressier than others. Carnival was a laid back style, but if you wanted to dress to the nines, then you didn't feel out of place doing that either.

I think you will be very surprised how nice a cruise is.

The worst issue you would have is shore excursions. Most countries don't have ADA laws like we have, and aren't all that accessible for those with wheelchairs or scooters. If you can get by with a walker or cane, you should be able to do most things.

 

[mom3sonstt]

I can get around without the scooter. Shoot all go all year without one at home. I know at WDW there is way too much walking to attempt it. I just didn't know if there would be a lot of walking on a cruise ship. I know I wouldn't be park touring, but I didn't know if just due to the shear size of the ship getting from my cabin to a meal would be "too much". And I guess I should have clarified - he is talking about a Disney cruise. I think I would be perfectly content going from a lounge chair with a book, to a meal, to the "broadway-style shows" and not much else. I don't know what he has in mind

 

[peemagg]

I did fine with just my cane. My ECV never left the room until we got back to port. I only need a cane or crutch when I am walking alot. I don't use one on a daily basis at home either. If there is really a lot of walking (like Disney) I use my scooter. On Carnival, or room was in the middle of the ship, so we were centrally located to everything. If you decide to go, try and pick a room towards everything you want to partake in. This will help with your amount of walking.

Pm me and I will give you info about a site with more info on cruises.

 

[KPeveler]

Something you mentioned is that you may think about it after getting a kidney... Are you currently waiting for a transplant? On a cruise there is usually not any easy way to leave the cruise and get back to the US to a hospital. My understanding about transplants is that they are highly time sensitive, and that if you cannot get there in a certain amount of time, they go to the next person on the list. It could conceivably be days to get back to the US and to the right hospital, which (as I understand it) would not work if there was a kidney waiting.

I have not done a cruise, nor have I ever used an ECV, so I am little use for those questions, but this one point just popped into my mind, so I thought I would bring it up!

 

[mom3sonstt]

Yeah - I've thought about the "what if a kidney comes" issue. After waiting for over 5 years I've almost come to think of ever receiving one as a myth. I guess that would be another reason for waiting until after getting one before going on a cruise. We have gone to WDW several times since I've been on the list - and my doctor has never voiced any concerns - but maybe he just assumes I can catch a flight home if necessary.

When I first got on the waiting list they told me the average wait was about 2 - 3 years, when I was closing in on 2 years they told me how close I was - that the wait was 3-4 years confused: what happened to 2 - 3?) Then when I was at 3 years then the wait was 4 - 5. Now that I've passed the 5 year mark they just tell me that I should be close. The "problem" is that my blood type is O - so while I can donate to anybody, I can only receive an O. I always figured I wouldn't get the call until after my brother did because he was the same blood type - and I figured since we were siblings, most likely any kidney that would work for me would work for him, and he had been on the list before me. Well, he received one nearly two years ago. For awhile I thought it would be any time. Now I've kind of gone back to the mindset that it's a myth.

 

[KPeveler]

Unless you stay around big islands, it can take quite a while to get you out of there... If you have been waiting this long, it would be terrible if you got a call and then could not get home!

Disney you could fly out within 3-4 hours - another country would be a LOT harder.

 

[dclfun]

You can have your supplies delivered as long as your supply company is okay with shipping, and I'm assuming they are since they delivered to WDW. You probably won't need the ECV for distances- there really isn't alot of walking on the ship, esp. as compared with a Disney park. Of course there are days in port where you might need one for long distances but on the other hand it will limit your ability to get around. Which itinerary are you planning on? Alot depends on the ports you will visit as far as how easy or difficult it will be to get around on an ECV. I'm thinking it would actually be easier in ports to use a manual w/c if someone can bump you up over curbs and help you into transportation. There aren't many/any accessible shore excursions but lots are available if you can walk a few steps and don't need a lift vehicle. I know how you feel about the transplant list. My son is B+- it took him FOUR years just to get ON the list while he was on dialysis due to issues with health insurance coverage. He was only 19 years old but was no longer able to be covered by my health insurance and had to prove he could pay for his post-transplant medications as his Medicare will stop the day he gets the kidney, while he's in the hospital so he'll be saddled with that bill too. Ridiculous? Yeah- good 'ole USA. We were also told the average wait was 4-5 years. My other kids would donate but they're all A+. Waiting is so hard as he never feels good and as you know, the renal diet is horrible. I think a cruise is a great option for a vacation but I would check to see if any travel insurance covers emergency medical evacuation in the event that a kidney becomes available.----Kathy

 

[SueM in MN]

Unless you stay around big islands, it can take quite a while to get you out of there... If you have been waiting this long, it would be terrible if you got a call and then could not get home!

Disney you could fly out within 3-4 hours - another country would be a LOT harder.

I guess I would have a heart to heart with the doctor before booking a cruise and ask some of those hard questions.

You can have your supplies delivered as long as your supply company is okay with shipping, and I'm assuming they are since they delivered to WDW. You probably won't need the ECV for distances- there really isn't alot of walking on the ship, esp. as compared with a Disney park. Of course there are days in port where you might need one for long distances but on the other hand it will limit your ability to get around. Which itinerary are you planning on? Alot depends on the ports you will visit as far as how easy or difficult it will be to get around on an ECV. I'm thinking it would actually be easier in ports to use a manual w/c if someone can bump you up over curbs and help you into transportation. There aren't many/any accessible shore excursions but lots are available if you can walk a few steps and don't need a lift vehicle. I know how you feel about the transplant list. My son is B+- it took him FOUR years just to get ON the list while he was on dialysis due to issues with health insurance coverage. He was only 19 years old but was no longer able to be covered by my health insurance and had to prove he could pay for his post-transplant medications as his Medicare will stop the day he gets the kidney, while he's in the hospital so he'll be saddled with that bill too. Ridiculous? Yeah- good 'ole USA. We were also told the average wait was 4-5 years. My other kids would donate but they're all A+. Waiting is so hard as he never feels good and as you know, the renal diet is horrible. I think a cruise is a great option for a vacation but I would check to see if any travel insurance covers emergency medical evacuation in the event that a kidney becomes available.----Kathy

very important and also to make sure that they will cover a medical evacuation if you need one for other reasons.

Also, Cheshire Figment posted some WDW cruise information, including links to maps, etc in post # 13 of the disABILITIES FAQs thread.

 

[mdvlprof]

Except for possible medical evac (which should be covered by buying travel ins) - cruising is a good vacation.

Because ship are smaller than WDW, getting around the isn't a big deal. Handicap rooms are big enough to handl wheelchair or ecv. DS did cruise, and he is quadreplegic. I used a quad-cane, didn't have to use rolling walker (which I brought along). We going on another cruise in Dec.

 

[mom3sonstt]

He was only 19 years old but was no longer able to be covered by my health insurance and had to prove he could pay for his post-transplant medications as his Medicare will stop the day he gets the kidney, while he's in the hospital so he'll be saddled with that bill too. Ridiculous? Yeah- good 'ole USA. We were also told the average wait was 4-5 years. My other kids would donate but they're all A+. Waiting is so hard as he never feels good and as you know, the renal diet is horrible. I think a cruise is a great option for a vacation but I would check to see if any travel insurance covers emergency medical evacuation in the event that a kidney becomes available.----Kathy

See - I was told the opposite - but I had insurance through my husband. I have polycystic kidneys and as they got worse I entered End stage Renal Disease. When I started dialysis I was told that I was eligible foe Medicare. I didn't take it at that time because DH's insurance was very good and it didn't make sense to pay for Medicare on top of that. However, I was also told that once I had been on dialysis for 30 months (I think that's the number) that Medicare would become my primary coverage so I had to make sure I was signed up for it before then. My insurance company know that Medicare becomes primary at that point and would deny my coverage if I wasn't on it. I was also told that if I had gotten a kidney before needing to start dialysis, that medicare would kick in the day I got the kidney. I asked how I could do that when I didn't know whey I would get a kidney. The social worker at the transplant office said that they are allowed to apply retro-active to the transplant...or maybe to the begining of the month that the transplant takes place. I don't remember - it was so long ago.
As for the renal diet......well, I do peritoneal dialysis, so I don't really follow much of a diet. I am supposed to have lots of protein and potassium and limit my phosphorous - but since I am dialyzing every night (or constantly actually since I carry a load of "juice" in me at all times) it's not as up and down as it would be if I did hemo-dialysis. I know when my brother did hemo there were lots of things he had to avoid that my doctor never even mentioned to me. My husband would have donated - but he's an A - I didn't even check with the kids. I figure my disease is inherited and if one of them has it I would rather one of the other boys be able to donate to them rather than to me

 

[dclfun]

See - I was told the opposite - but I had insurance through my husband. I have polycystic kidneys and as they got worse I entered End stage Renal Disease. When I started dialysis I was told that I was eligible foe Medicare. I didn't take it at that time because DH's insurance was very good and it didn't make sense to pay for Medicare on top of that. However, I was also told that once I had been on dialysis for 30 months (I think that's the number) that Medicare would become my primary coverage so I had to make sure I was signed up for it before then. My insurance company know that Medicare becomes primary at that point and would deny my coverage if I wasn't on it. I was also told that if I had gotten a kidney before needing to start dialysis, that medicare would kick in the day I got the kidney. I asked how I could do that when I didn't know whey I would get a kidney. The social worker at the transplant office said that they are allowed to apply retro-active to the transplant...or maybe to the begining of the month that the transplant takes place. I don't remember - it was so long ago.
As for the renal diet......well, I do peritoneal dialysis, so I don't really follow much of a diet. I am supposed to have lots of protein and potassium and limit my phosphorous - but since I am dialyzing every night (or constantly actually since I carry a load of "juice" in me at all times) it's not as up and down as it would be if I did hemo-dialysis. I know when my brother did hemo there were lots of things he had to avoid that my doctor never even mentioned to me. My husband would have donated - but he's an A - I didn't even check with the kids. I figure my disease is inherited and if one of them has it I would rather one of the other boys be able to donate to them rather than to me

I wish for everyone that the wait wasn't so long. My son didn't/doesn't want to consider peritoneal but I wish he would as he'd have more freedom. He was diagnosed with ESRD when he first visited a Dr. and is very lucky to be alive as his electrolytes were really out of whack and he was so anemic that he needed immediate transfusions too. No one knows the cause of his kidney disease- one Dr. said it might have been an issue at birth that had been steadily progressing, all said it wasn't sudden or he'd have noticed how terrible he felt- he just got used to it gradually, one theorized it was due to an antibiotic he took. As to the emergency evacuation, I know Disney's insurance covers it up to 30K, but I'd want you to check on coverage for a pre-existing condition or specifically in the event that a kidney became available. PEC exclusions really only apply if you have a change in treatment regimen after final payment, but as you likely wouldn't have changes, then the exclusion shouldn't apply. Still, emergency evac is usually for people who become too ill to be treated onboard, and in your case you wouldn't be "ill" but of course you'd want to get to that kidney asap! Oh, and as to insurance coverage, my son had private insurance from his job ( he worked full time after HS during the summer and had coverage) and the COBRA was paid by the Kidney Foundation as they said it would be much more appealing to the hospital and the dialysis center. He kept it for as long as possible then is now just on Medicare. He still gets his meds via the Kidney Foundation which is a real blessing as he has had immense trouble with anemia and high blood pressure and takes expensive meds, plus the phosphorus-binder, etc. Tonya, I didn't realize your brother got his kidney- I hope yours comes soon!! Was he O+ also?---Kathy

 

[mom3sonstt]

Yes, my brother was also an O. And he did receive his kidney - it was Halloween week-end two years ago. Unfortunately, while the kidneys were working fine, he was having pains in his chest. He told his doctors about it (had to visit them several times a week post-transplant) and was told that is common after the transplant. That one of the medicines he was on kind of numbs the valve that relieves gas so patients get excess gas pain built up. He looked online and found several people and places that confirmed that. But he got to the point that it hurt so bad that he didn't eat or drink much because it aggravated the pain. Finally he got to the point that they said he was getting dehydrated and that he should come in and get on an iv to get his fluids back up. He went to change clothes and put on his shoes and that wore him out so much that my folks (who he lived with) called an ambulance for him so he could get oxygen and whatever on the way (it's typically a 45-50 minute drive). My dad followed behind to be there to bring him home when he was done, or to keep him company if he was going to have to stay overnight. That was the worst-cast scenario in everyone's minds when he left. They took him to the emergency room, the ER doctor was talking to him - dad could here Bret answering the dr.s questions, then all hell broke loose - he had a heart attack right there in the ER and they couldn't save him. It was the day before Thanksgiving - less than a month after his transplant. Of course hindsight is 20/20 - but I am furious that a doctor that he saw on such a regular basis wouldn't have checked out his heart after he complained about chest pains. I understand that it was a common occurence - but even still - Bret had had stents put in his heart when he was in his 30's, our grandfather and some of his brothers had heart attacks, some fatal, our father had a quadruple bypass just a few years earlier - Bret had heart problems. In the chaos of the days following, I know my dad said that he was told that Bret had had an undiagnosed heart attack days before he came to the ER. When I had my next visit with the transplant doctors (I see them every two years - and there are only 2 surgeons so you get whoever is on call when your kidney comes in - so they work together - Bret & I have the same ones). Anyway, when I met with them next, about 6 months later, he expressed his condolences for my loss - I told him what dad had said about him having an undiagnosed heart attack, and he went on the defensive and said that no that's not what happened and was pretty abrupt about it and got on with my visit. I hope when it is my turn that I get the other Dr. (which is kind of ironic - because the other dr is the one that actually did his surgery), but I just don't like/trust/care for this one anymore. He is fairly new to my hospital and I haven't seen him often. I have seen the other dr (she did some of my surgeries). I haven't seen her since Bret died, so maybe if I had seen her right away afterwards I would feel differently, but I have had her so often from the very beginning. The surgeon that did my mom's transplant (over 11 years ago with not a single problem) left the practice, another one took his place just as I was getting on the list, he left to go back to Louisiana a couple years ago and then they got this other guy. She has been there for several years and seems pretty steady.
But - no, I probably didn't mention here about Bret getting his kidneys - that whole month was hectic - what with him being in the hospital for about a week, then my youngest son was in a musical out at the school so we had to get him to practices (fortunately Bret was able to "suck it up" enough to come out and watch Mark perform - it was the last time me and my kids saw him alive) and then the holidays were coming - and then he died.

I'm sorry for rambling on so much - I miss him, and thinking about this just reminds me of so many little stories - even from just in that month. I'm reigning myself in from writing pages of anecdotes from that month.

 

[dclfun]

Tanya- I'm so sorry to hear about your brother! ---Kathy

 

[tami82]

I know the Norwegian cruise line has something called Freestyle which you can eat when you want so im guessing you wouldnt have to dress up depending on the place you decided to eat at if it didnt require it.

 

[funnygarcia]

dclfun
I'm confused, Medicare doesn't drop you right after transplant.
They cover transplant meds up to 36 months, social security will consider a person still disabled up to one year after transplant. Check with the dialysis social worker, he/she should be providing guidance on insurance, Medicare etc..
I was a living donor to my dh, it lasted three and a half years before he had chronic rejection and ultimately failed. He was a young 23 at diagnosis and has been on dialysis (with that short but wonderful 3 1/2 yr break in between) for the past 14 years. He tried peritoneal once, it caused inguinal hernias - ouch! had those repaired and got peritonitis.. said okay, that's enough!

For the past two years he has been dialyzing at home with the Nx Stage machine. Short frequent hemodialysis is MUCH better than center based, less diet restrictions, no huge changes in volume and less fatigue.
Some doctors allow "extended" use of NxStage, slow dialysis all night long. That type has been in small studies and found to be nearly as good as a transplant.. without the nasty side effects.

For a young person, I urge you to look into it. Davita opens new home based centers all the time, it may require travel to do the training.. but it is worth it! My dh now is on less meds for high blood pressure, is able to eat a more normal diet (except phosphorus is still limited), is able to drink more fluids. Rarely needs any EPO, he hasn't been anemic for over a year now.

There was a group of Nx Stage users that went on a cruise together..
info here!
http://www.nxstage.com/FreedomCruise/

http://www.nxstage.com/chronic_renal_care/index.cfm

A really good forum for asking questions about dialysis (all types) , travel and just really good support....

http://www.ihatedialysis.com/

Good luck!