Hello,
My name is Karyn and I am a travel agent/planner. I was watching ABC news cast last night about home dialysis. To say the least, it sounds like a wonderful advancement and one that would allow travel. I often thought about getting into the travel segment for people with special medical needs. As I gather information about the possibility of setting up my business to specialize in travel planning for customers with specialize medical needs I have a couple of questions that I hope someone or several people can answer.
First, What information would I need to learn about from a cruise line or a big resort area like Disney World if any for a person who needs dialysis while on a vacation?
Second, do you feel there is a need for a travel agent who specializes in this area?
Thanks for your interest in home dialysis! I’m not a patient, I’m an administrator of this board, but I do have a few thoughts for you. The way that travel is usually handled for the 92% of patients who are on in-center (not home) hemodialysis is that they make arrangements through the social worker at their clinic to find another clinic that will have a slot for them and be somewhere near their destination. This generally needs to be done weeks/months ahead (not exactly spontaneous), and often there isn’t a slot to be had or the times are not convenient, plus there are concerns about getting care at a different clinic that may do things differently or not do a good job putting the needles in.
Patients on PD (about 8%) have had it easier–the PD supply company will ship the fluid they need, and they can either do manual exchanges or bring their cycler machine with them. They still need to connect with a clinic to provide back-up care, but the process has generally been less complicated.
For the 1/2% or so of patients on home hemo, travel has been challenging. Many are used to getting longer or more frequent treatments than clinics offer in-center–but these cannot usually be arranged in “transient” settings, so they often feel worse on vacation because they’re not getting as much dialysis, and they have to follow a more rigid diet to compensate for getting less treatment. Also, they like to do things themselves, and clinics may have a problem with their high degree of control. So, it can be difficult.
IMHO–and I’m sure travelers on this board will weigh in here–the challenges for helping home hemo patients center around the fact that there are several good machines that are all being used for home dialysis, and patients are generally trained on just one. So, to be a viable home dialysis travel option, I suspect you’d need to have several machines available for use. At a place like Disney, this might not be a problem. Some machines also require special water treatment equipment, which would need to be in place and be tested often. To me, travel has been the one Achilles heel of home hemo, and I’d love to see it addressed.
I am a home hemo patient on NxStage which is said to be portable but to take it on a plane would be difficult. I would love if NxStage could have machines available at vacation destinations.
I realize that it may not be cost effective but for me to lug the machine to the airport, as well as my supplies (tho I believe NxStage will ship the solution and cartridges). for a week’s treatment I would need saline, needles, Heparin, tape, gauze, etc.
I plan to go to Pompano Beach early May and will probably go to a clinic because it just seems unmanageable to take my machine.
how 'bout it NxStage? any ideas?
Just drop your machine in one of these…all your needles and small items go in there to…it rolls on wheels and is impact resistant. This one below is a prototype but please call NxStage for the right one for you…
Hi Karyn,
I am also a travel Agent, My husband is on nocturnal dialysis. I have done some research and found that Holland America is locked in to Dialysis at Sea. They are the most rude people I have ever delt with.
They also don’t give the dialysis patient any brakes on cost. I know that when you book groups there is a discount. But they do not seem to do that. Dialysis at Sea also does RCCL, and Princess. The other lines do not have the capability “as yet”. I have found but not had time to contact so Docters on line that also do trips. You need to understand that besides the crusie cost there is a cost to do Hemo dialysis that runs about $1600 per sailing. When I talked to dialysis at Sea they would not budge for me as an agent!! Please e-mail me and I will fill you in. pc639@verizon.net :lol:
Karyn,
I travel allot; I think you could provide a service by identifying dialysis units that accept visitors, in areas people want to visit, offer vacation ideas, itineraries packaged for dialysis consumers. For instance a package taking in London and Edinburgh - using travel friendly private units. Or units in the area of National Parks, for instance the Port Angeles unit in Washington State giving ready access to the beautiful Olympic National Park.
Another service would be to identify units that can/would schedule treatments in advance. For instance it would help to plan to know a month ahead that you will be able to treat on Wednesday in the morning. A unit like the private unit in Edinburgh can do that but few in the US would be able to give a preferred day/time weeks ahead, some could tell you when they usually run transients though and that helps to plan.
It is the actual COST of providing dialysis treatments on cruise ships that prevents the charge per treatment being lower.
The cost of providing this service includes the passage charges for the Professionals, equipment maintenance, supplies, and general administration time which is formidable for this kind of program.
As this medical care is being provided out of US territory, there is no Medicare reimbursement available and if it were available, it would not begin to cover the cost of providing this experience for patients and their families.
It is unfortunate that not everyone can financially afford to participate in this experience.
However, I must remind anyone who reads this that there was a time when there was NO Medicare coverage for chronic dialysis treatment at all and many people and their families had a lot more to worry about than taking a vacation.
[quote=spiderwoman;1500]I am a home hemo patient on NxStage which is said to be portable but to take it on a plane would be difficult. I would love if NxStage could have machines available at vacation destinations.
I realize that it may not be cost effective but for me to lug the machine to the airport, as well as my supplies (tho I believe NxStage will ship the solution and cartridges). for a week’s treatment I would need saline, needles, Heparin, tape, gauze, etc.
I plan to go to Pompano Beach early May and will probably go to a clinic because it just seems unmanageable to take my machine.
how 'bout it NxStage? any ideas?[/quote]
Nxstage has 2 different types of travel cases available. One is a soft sided case and another is a hard case. The hard case is designed for airline travel to protect the cycler.
[quote=Unregistered;12472]It is the actual COST of providing dialysis treatments on cruise ships that prevents the charge per treatment being lower.
The cost of providing this service includes the passage charges for the Professionals, equipment maintenance, supplies, and general administration time which is formidable for this kind of program.
As this medical care is being provided out of US territory, there is no Medicare reimbursement available and if it were available, it would not begin to cover the cost of providing this experience for patients and their families.
It is unfortunate that not everyone can financially afford to participate in this experience.[/quote]
It will be interesting to watch as options to the traditional model appear on the market. A NxStage at Sea model would turn the traditional model on its head. Rather than paying for the privilege NxStagers at Sea could enjoy group discounts or enjoy the company of people they would pay to talk to.
I think a cruise in warm waters during winter that featured a program of presenters such as Dr. Agar, Dr. Blagg, Dori, etc. not to mention the opportunity to meet other people taking control of their renal replacement (xdialyzors welcome, as always). I think there has to be a business model that would present this opportunity at a discounted rate and no additional treatment fees. You’re either with us or against us D@S.
[quote=Unregistered;12472]However, I must remind anyone who reads this that there was a time when there was NO Medicare coverage for chronic dialysis treatment at all and many people and their families had a lot more to worry about than taking a vacation.[/quote]Actually what you must do is take your sanctimonious comments and take a long walk off a short pier, as they must say in the cruise industry. It is hard to credit snarky comments from anonymous posters. However, it is interesting that you seem to be one who Googled up a D@S reference and had to defend (your?) D@S’s business model. I’d say your comments may explain why people who have dealt with D@S over the phone and in person (including myself) have heard a distinct it’s more than you deserve attitude. Which is total BS.
I flew with the cycler last October using that metal carry case - plus four other boxes: heater, bracket, IV pole, saline - and will take my cycler to DC at the end of this month. That case and the cycler together weigh exactly 100 pounds. I tell people planning to travel by plane with the cycler get there early and either “Be strong like bull or tip like drunk sailor.”
Since the Medicare ESRD Program was passed in 1972–more than 35 years ago–I’m not sure what the point is of bringing it up now.
Dialysis extends life, and people who feel good on dialysis want to be able to have a life, just like everyone else. That includes travel. No, not everyone can afford a cruise (of any sort). But discounts are usually available, at least on the cruise portion of a trip even if not on the dialysis portion.
IMHO, if NxStage or Allient Sorbent machines were used, which do their own water treatment, the costs should come down. And, of course, dialyzors who bring their own NxStage machines don’t need a special dialysis cruise–they can go anywhere they like without your help. Given the poor financial status of most people on in-center hemo (92% of all dialyzors), I have to suspect that a new business model in which you attract dialzyors not by providing dialysis itself (which home patients can do for themselves), but by offering togetherness, special programs, etc. that attract them, might be more successful. (How many dialyzors do those cruises now?)
[QUOTE=spiderwoman;1500]I am a home hemo patient on NxStage which is said to be portable but to take it on a plane would be difficult. I would love if NxStage could have machines available at vacation destinations.
I realize that it may not be cost effective but for me to lug the machine to the airport, as well as my supplies (tho I believe NxStage will ship the solution and cartridges). for a week’s treatment I would need saline, needles, Heparin, tape, gauze, etc.
I plan to go to Pompano Beach early May and will probably go to a clinic because it just seems unmanageable to take my machine.
how 'bout it NxStage? any ideas?[/QUOTE]
Hope you have done your homework before getting your vacation tickets confirmed… If you plan on using a clinic you need to have your SOCIAL WORKER involved as they will be the one that does this for you… Depending on where they can get you in for your treatments there are a lot of things that they need to get done before you are allowed to travel… My partner and I have traveled and think we had to fill out requests from the receiving clinic and this took about a month thru the social work. They want your prescription (DR’s orders) for your treatment; Blood work to make sure you don’t have blood diseases. And since you are on NxStage I doubt that there are many clinics that are using this machine. So you would have in center treatments on a hemodialysis machine of some sort… or one that you were on before home hemo. Please check with your social worker ASAP…
Yes; I hear you, THe system One is portable but quite heavy and bulky once installed in the travel or shipping box… I Asked NxStage if they had a loaner program… But they are still trying to get patients to use their machines now… You know if we all ask them to start a loaner program that they ship supplies and machines to our vacation destinations I think they might see another revenue trail… And get somthing started. Next time you order your supplies ask them when will they start such a program… Maybe after hearing from all their patients they might get one started… Wouldn’t that be the ultimate portable machine…
[quote=Anonymous;1486]Hello,
My name is Karyn and I am a travel agent/planner. I was watching ABC news cast last night about home dialysis. To say the least, it sounds like a wonderful advancement and one that would allow travel. I often thought about getting into the travel segment for people with special medical needs. As I gather information about the possibility of setting up my business to specialize in travel planning for customers with specialize medical needs I have a couple of questions that I hope someone or several people can answer.
First, What information would I need to learn about from a cruise line or a big resort area like Disney World if any for a person who needs dialysis while on a vacation?
Second, do you feel there is a need for a travel agent who specializes in this area?
Thank you, I look forward to your comments.[/quote]
I have gone to Disney World with my family every year since ESRD onset in 2002. DaVita has a unit at Celebration, Disney’s Mayberry USA community about 4 miles from the World. They are us to transients and made my stay comfortable. Also I have brought my PD cycler and stayed at Animal Kingdom. The Resort stored my dialysate and were very helpful in delivering it to my room. Also, I did manual exchanges at Disney Studios, the Magic Kingdom and Sea World. You just check into their First Aid Centers. I had a private room to dialyze at each park while my family enjoyed to the activities.
When we fly to Jamaica with my pd cycler our travel agent was clueless of our needs and despite assuring us that everything was taken care of it was not. We needed assistance in transfering our cases of dialysate to our charter flight. There was no help, so while I held out 3 year old son, my wife brought a weeks worth of dialysate from the curb to the check in. And, the charter flight had not been informed of our cargo needs which made it stressful. I imagine in today’s high security state we would have been turned away.
Hope these experiences help as you formulate your business. Erich
I know as a travel agent who has done travel for clients with special needs, it takes a lot of work making sure that everything is set up. I did a trip for a client in an electric wheelchair with a large service dog. She wanted to do Alaska, Working with the airlines, cruise ships and land operators is very time consuming. You always have to check and recheck everything.
This client had a a wonderful time. Everything worked out fine until the last day of her return. She got sick and Princess cruise took over and worked everything out for her flight back from Alaska, (even though we did air seperate). In my book I will always use Princess for people with special needs.
Pat
[quote=Gus;1501]Just drop your machine in one of these…all your needles and small items go in there to…it rolls on wheels and is impact resistant. This one below is a prototype but please call NxStage for the right one for you…
[/quote]
I called NxStage and they said the hardcases run approximately $600.00. They are sending me some cardboard shipping boxes instead. Nice looking cases, though. Erich
I will be leaving in 8 weeks on a 10 night Panama Canal cruise. I have made my own arrangments with Royal Caribbean and NxStage. So far, this has been a breeze. I will not lie that I do have some concern about making sure my supplies will be delivered on time, but I will have faith. Yes, the airline container from NxStage is awkward but it’s not that bad. There are no wheels on it. It has been designed to pass DOT code. Sure it takes a lot more planning but it is a must to continue to do what you love. I have been traveling on dialysis weather it was P.D., In-Center, and now Home Hemo. I have never had a problem.
Since this is my first experience flying & cruising with the NxStage System One, I will follow up when I return with pro’s and con’s of my experience.
Mike
P.S. If you are a DaVita patient, Do Not spend the $600.00 for a case from NxStage. Corporate DaVita has loaners. Just ask your center manager to arrange it for your trip. They will ship it to you and then pick it up after you return.
My nurse was clueless. She told me to call NxStage. I reminded her that I probably won’t be the only one ever to fly on home hemo at her center and that one of the selling points of NxStage is its portability. I mentioned this to the head of DaVita @ Home and she was much more helpful. They have purchased a hard container though it does not have wheels.
There is a training curve even with the nurses and techs regarding home hemo. Instead of finding out more about travel options for her patients my nurse let me do her work. I think though through my communications with the helpful folks at NxStage, the DaVita @ Home Coordinator, and my center nurse she is probably much more educated on how to assist her patients with their travel plans.
