Dialysis Question, Opinions and Help

[luvmy2kids]

We are on the Sensation on 5/22. My dad also had a reservation, but we canceled it on two days ago since that was the last day to cancel without penalty. My dad wants to reschedule the cruise when his treatment is in place, even though the price went up. This is the deal.

 

My dad receives dialysis on Tues., THurs. and Saturdays. We plan to have his Tues. appt. changed to MOnday at 7 AM, which will be plenty of time to have his 4 hour treatment and get down to Port Canaveral. (we live in kissimmee) He only needs one treatment on the cruise, as we will be back in port on saturday morning and he'll make his sat. afternoon appointment. I spoke to Carnival and they told me I have to schedule dialysis at all ports in case we miss a port. Therefore I have to schedule dialysis at Grand Turk (Wed.) and Nassau. (Friday). Global Dialysis does not have a center in Grand Turk, but the main hospital which is near the port does have a dialysis center. I have spoken to them and they told me what they need from his doctors. I am in the process of getting in touch with the center at Nassau to see what they need. I already found the cost.

 

THe cost includes treatment but not medication. What medication are they talking about? Is it the meds he takes on a daily basis? (i plan to get this info straight from the treatment center, but was wondering if anyone knew)

 

Anyway, this is my parent's 25th anniversary and i really want to help them to go. Am I crazy to even attempt it? Has anyone here had dialysis done at port? Is it a hassle? I would love to hear your stories. Thank you.

 

Sorry for the long rambling post..

[Efisio]

Why don't you save yourself any worries and book a cruise with dialysis facilities on board.

There is a company... Dialysis at Sea that specialises in just that.

 

Good Luck

 

David

[0ldog]

While on the Century last month I noticed a sign saying that Dialysis was available on board. What a great thing, I was thrilled. My daughter-in-law is a brittle diabetic, on dialysis and awaiting a liver and kidney transplant, and now she could go on a cruise with us.

 

We all discussed taking a cruise next February to the southern Caribbean and saw that Splendor of the Sea was scheduled in that time frame. Well I called RCCL and asked about dialysis aboard that ship. The customer service rep. that I spoke to said that "Dialysis at Sea (dialysisatsea.com) brought the "STUFF" on board and took care of all of that."

 

So I went to their web site and sure enough the were in the business of supplying dialysis aboard ships. There is a link to a listing of ships and sailing dates that they are going on. Unfortunately the list was just through 2006, so I called their 800 number.

 

I spoke with a woman who looked at their 2007 bookings and told me they were not going to be on the Splendor next year. I was disappointed, but what the heck, we could select another cruise. She said the new listing for 2007 would be published soon and for me to check back at their site in the future.

 

Then I asked her what it would cost for the treatments............. READY FOR THIS?

 

I was told that I would have to book the cruise through them at a price that was double the advertised brochure price. And that was per person in the cabin, not just the patient, and didn't include the dialysis. That would be and additional $1000 per treatment (cash or credit card). She said that Medicare and Medicaid would not pay for it, but some private insurers due cover it.

 

Hopefully someone out there has better news for both of us.

 

Good luck,

John

[luvmy2kids]

Well, the reason we didn't look into dialysis at sea (the ideal scenario) is because most of us on the group are already paid in full for this cruise and requested that vacation week at work (most had to choose before 1/1). Everyone booked way before my dad even knew he would be having dialysis.

 

I spoke to the dialysis center in nassau today and they were so nice. The dialysis in nassau is $450. The dialysis in Grand Turk is $350. THese prices, of course, are out of pocket. You may or may not be reimbursed by your health insurance company as an out of network provider. All in all it sounds like it could work. I just gotta get an estimate of all costs for my dad and let him make the decision. I was provided with a list of medical records that must be provided to the center ahead of time.

 

I've been doing a lot of research on it and would be happy to pass it on to someone who may need it.

[Queenie2]

Dialysis at sea only does certain cruises and if they don't have enough folks signed up, then they are canceled. It's basically a dialysis group cruise.

It's not like you can just come aboard any cruise and do the dialysis with them.

 

As far as dialysis in ports, I have to say it's all iffy. I’ve had more than a few letters from folks where the ports were changed at the last minute or when they couldn't get back to the ship before it left. I have to say after reading some of the accounts I wouldn't recommend it at all.

 

I don't know what I would advise you at this point. Just know that there may be some issues in the option (shore dialysis) you chose. If you are OK with that, then I say go for it. But do realize that it's not perfect.

 

Candy

[jhodg56010]

I THINK YOU CAN DO IT. My wife has been on hemodialysis for over 8 years and during that time she has taken 5 cruises using Dialysisi at Sea. The cost of each dialysis was about $450, and the meds they don't give unless you bring your own for them to give are EPO and IV iron, the patient's regular oral meds are brought and taken by the patient as usual. But in addition, we have arranged land dialysis while on non-dialysis cruises in Vancouver, St John New Brunswick, and Montego Bay, Jamaica. These all worked fine with no complication. We set everything up initially by internet supplemented by some long distance phone calls (from Ohio where we live). Be sure to get all the medical tests and information that they require, and bring 3 recent flow sheets. The hardest part was finding the centers via taxi from the ship pier. Nassau is not that big and should be no problem. Be sure that the time they offer you allows for time to get back to the ship in time for departure. We nearly missed the ship in Jamaica. Low salt diets can be pre-ordered on the ship. Be sure to follow the low sodium, low potassium, and low phosphorus diet carefully. It would be a good idea to bring a portable self monitoring Blood Pressure device to check the BP frequently and adjust BP meds, if needed. You should be able to skip one dose of (expensive) Epo while on the cruise. Plan to enjoy the cruise. Our next cruise is to Hawaii next month where we have scheduled dialysis at land centers which will accept Medicare. Go! Enjoy! Jim

[luvmy2kids]

thanks jim! you have made me feel a little better!!

[luvmy2kids]

Well, I have dialysis booked at two ports (one tentative in case our first port is not reached) for my dad. I have his dialysis center working on providing the centers with the documents they need. I have a fridge for his room for his insulin. I got him a handicapped accessible room which includes a bath stool and a doorway wide enough to accomodate a scooter! I have his medical form filled out and sent to carnival and am in the process of getting his doctor's letter that he's ok to travel. Now all I need to do is buy the happy anniversary decorations for him and mom!! It was so much work, but I hope its a special time for my parents and that everything runs smoothly. I'll update when I come back from the Fantasy in May.

 

I have to say that the patient coordinators at Nassau and Grand Turk dialysis centers are very sweet and accommodating!

[jhodg56010]

Good job, luvmy2kids. I'd call each dialysis center and be sure they have everything they need to schedule your dad. They often need a recent EKG, Chest X-Ray, and a recent negative HbSAg (active hepatitis B) test. They will likely want a letter from his doctor saying he is fit to travel. Watch his BP and sugars as one tends to overeat on cruises, as it is good food and pre-paid. Have a wonderful cruise. We are off to Hawaii in one week where my wife will have two dialysis treatments on the islands. This will be our 16th cruise and we have loved them all. Good luck for sunny days and calm seas. Jim

[luvmy2kids]

thanks jhodg56010. i hope you and your wife have a wonderful trip! there is a whole list of records both dialysis centers need for my dad. i forwarded each list to his social worker who is going to fax it all over, plus we are taking a hard copy of all medical records with us. i, of course, will worry about every little thing. :rolleyes: i will try to relax and have a nice trip. funny, the dialysis people did not need a letter from my dad's doc stating he's ok to travel, but carnival does. i spoke to the doc's nurse who is going to have him dictate one as soon as she sees the dialysis schedule i put together. so cross your fingers. everything (please God) is working out!

[luvmy2kids]

Jim, I realized you should return in a day or two. How was your cruise? Did your wife's dialysis go smoothly? Hope you guys had a great time!

[jhodg56010]

We got back yesterday from our 7 night cruise on the NCL Pride of America cruise among 4 Hawaiian Islands. Dialysis is not available on this ship. My wife received efficient competant and complication-free hemodialysis on two of the islands via the St Francis hospital system. One was in Honolulu and the other in Lilihue on Kauai. She got dialysis the night befor we left and the day after we returned. I arranged these mainly by internet, supplemented by a few phone calls and faxes. She missed only one excursion due to the dialyses, and was able to enjoy all aspects of the cruise and the beautiful islands. Medicare covered part of it, but my insurance refused to cover the rest, so we used our Visa card. We saw some people with wheel chairs, and others with scooters, oxygen tanks, two blind PAX with white canes and there was a large contingent of deaf people with 3 or 4 sign language interpreters, and these all also seemed to be having a good time. Some of our friends can no longer cruise due to bad joints or a spouse in poor health, so we are cruising while still able, physically, intellectually, and financially. We feel it is now or never, so we have opted for now. It was good. Jim

[luvmy2kids]

Jim, I am so glad you guys enjoyed your cruise! Ours is next month and I can't wait! I have done everything in my power to make sure things go smoothly for my dad. Cross your fingers for us!

[kiowarose]

Hello, I am a new dialysis patient. I was wondering if anyone knew what cruise lines would be best. and where i could find out more about them.

[luvmy2kids]

hi kiowarose. my dad has to have dialysis 3 times per week. he's never been on a cruise and we wanted mom and dad to come with us on a 5 day in May this year. after we booked we found out he would be needing the dialysis. so we cancelled his booking to see if we could set up his dialysis while in port or on the ship.

 

I found out that there is a company www.dialysisatsea.com who has dialysis cruises. Check out their site. Unfortunately, our ship is not a dialysis cruise. So then I found www.globaldialysis.com. They have dialysis centers all over the world.

 

Our cruise is Mon-Sat. Dad will be having dialysis on monday at his regular center (we live about 1 hour from the port). Wed. his dialysis will be in Grand Turk. (there was no center on the global dialysis site - i called the main hospital there and found they have a dialysis center) Friday I set a tentative appt. in the Bahamas cause Carnival requires an appt. at every port in case we miss a port. Saturday his dialysis will be here in his center.

 

I got the numbers from the global dialysis site. I basically had to call the centers, get their requirements, get their appt. availability in the times we are in port, get my dad's dialysis center to fax the required medical records, fill out a disability form with carnival and get an ok to travel letter from his doctor. PHEW. Lots of work, but if this trip is special for my dad, then it will be worth it. We also purchased travel insurance for just in case.

 

So, we haven't been on the cruise yet, we travel next month. So I'll give you an update as to how it went. I'm a bit nervous, but hope everything goes ok.

 

I would strongly advise you booking far ahead enough so that you have plenty of time to set up your treatment. I'd even get the availability of the centers where you are considering going before putting a down payment.

 

I hope this helps you in some way. Let me know if you have any other questions.

[jhodg56010]

Luv, you have done a good job in setting up your dad's dialysis on land from a cruise ship in May. Hope all goes well. If he can avoid excess salt and water causing weight gain between dialyses they won't have to take off a lot of fluid with each treatment so he won't feel weak or dizzy post treatment. Also many units have individual TV's so I suggest he bring earphones with a single jack to listen to a TV program of his choice which helps to pass the boring time on the machine easier. We will be eager to hear your report upon your return from your cruise. We love cruising, as do all these people posting on Cruise Critic. Kiowarose, look into Dialysis at sea, as they offer well run dialysis with a nephrologist, nurse, and dialysis technician on board. They use mostly Holland American, and Royal Caribbean ships, and some Radisson

too. We've found that dialysis patients can go almost anywhere with adequate planning. Do it while you are still able. Jim

[luvmy2kids]

Back from the Fantasy 5/22, 5/27. My dad got his dialysis at Grand Turk. I have to say that the nurses there were amazing and treated my dad like royalty! My parents didn't have time to shop or go to the pool, but he got his treatment and that's all that matters. We called the land number on the Capers and Carnival came to check on my parents at the hospital and told them that Carnival would have been glad to pick them up at the ship and drop them off so they didn't even need to take a taxi! Carnival drove them back to the ship and made sure they were back on time. My dad had a wonderful wonderful time and can't wait to do it again! If you are on dialysis, don't let that stop you from going on a cruise. It is possible. Thanks for all of your help with the planning!

[imacrusing]

So very glad things went so well!!!! I have been waiting on pins and needles for you to post when you got home.

 

Now that you have done it once, you are all prepared for another one.

 

It was wonderful of you to plan all this for your parents.

 

; )

 

Linda

[jhodg56010]

Luv, it is great to hear that your family enjoyed your cruise and that your dad could get his dialysis during that week, allowing him to have a great time. Your hard work in preparation paid off. Good job! I certainly agree that the need for dialysis should not prevent travel, including cruising. Our next cruise will be to the Baltic in September and that will be with the aid of Dialysis at Sea. A group of old friends from our neighborhood are going together. It should be lots of fun. Jim

[luvmy2kids]

let me know how your experience with dialysis at sea goes jim. my dad is now hooked and is already planning his next cruise. :eek: he wanted to try going again in october. :eek: (i hope he lets me recover a bit from this trip before planning another..hahaha) but i'm glad they had a great time.

[luvmy2kids]

I just wanted to bring this post back up to the top in case anyone needs information on dialysis while at sea. My dad passed away on February 27, 2008 so the cruise we had last May was sadly his one and only. I am so glad I was able to arrange his dialysis so he could go on that trip. All of the work was so worth it. He had a wonderful time on that trip with mom and my family and I never knew it would be his one and only time on a cruise before his death. Just goes to show, go out there, do lots of things and see the world no matter what your disability is. Make it happen for your loved ones because those are times you will always remember.

[jhodg56010]

Agree, Luv: Live as much as you can now while you are alive, as we all will be dead a long time. Since I last posted on this subject my wife (with end stage renal disease on dialysis now 11 years) and I have sailed in the Baltic with

Dialysis at sea on the Rotterdam, then Serenade of the Seas without dialysis on the ship but got it in St Lucia, and then Jewel of the Seas (without dialysis available) to UK and Norway where she got dialysis in Ipswich, England, Dublin,Ireland, Bergen Norway, and Voss in Norway. Last month she got her dialysis off the Jewel of the Seas in St Maarten all with no complication. So, with adequate planning and gathering of medical information dialysis patients can cruise almost anywhere. All the foreign centers we have used have been very professional, well run, clean, and with modern automated machines. Jim

[Bette]

LUV I was sorry to hear about your dad but glad that he was able to go on that cruise.JIM did medicare cover any part of the dialysis treatments? We have gone on many cruises but not since my husband started dialysis. We are thinking about planning our next vacation. It seems that going to a resort might be easier. He has to use a mobility scooter to get around so excursions are always tricky.He would really like to go to Japan but it is not scooter friendly. I looked into Dialysis at Sea. We accepted the cost of the treatments but the added cost of the staterooms is something else.Regent is our cruiseline of choice and they do not have dialysis available on board.

Did you say at one point in this thread that Medicare covered the treatments in Hawaii?

[JLC@SD]

I just wanted to bring this post back up to the top in case anyone needs information on dialysis while at sea. My dad passed away on February 27, 2008 so the cruise we had last May was sadly his one and only. I am so glad I was able to arrange his dialysis so he could go on that trip. All of the work was so worth it. He had a wonderful time on that trip with mom and my family and I never knew it would be his one and only time on a cruise before his death. Just goes to show, go out there, do lots of things and see the world no matter what your disability is. Make it happen for your loved ones because those are times you will always remember.

 

Memories last a lifetime.......it is wonderful your family now has the memory of their trip with your dad.

 

We have friends......and the wife was diagnosed with cancer.....she had always wanted to cruise........so the family took a cruise (her first)..........and she passed away a month later.

 

The family's Christmas card was the family photo......taken with her on the cruise.........wishing everyone a Merry Christmas from the xxxxxxxx family and their angel Peggy.....:)

[thegotogirl]

My dad is on hemo dialysis tues., thurs., and sat. We want to send Mom and Dad on a dialysis cruise for their 60th anniversary. They have to go out of Port Liberty because it is really challenging for them to fly. (they live in NJ)Has anyone gone on the 12 day up through New England and Canada through Dialysis Cruise.com? My dad also just had a hip replaced and is getting a new fistula next week, so we thought a cruise in Oct. would be something really great for them to look forward to. Any experiences would be welcomed!!!