Kidneys Failed! Still Goin' Cruising!

I've been lurking about this forum, reading posts on cruising with a heart condition for our cruise on Carnival's Fascination on November 13 (we leave next week — yay!).

Then, on October 22, I was in the emergency room with 30 pounds of fluid and in respiratory distress. By the end of the day, I had a permacath installed and was on my first dialysis session. Five days and four more sessions later, I was discharged, feeling great, and ready to move on with my new life.

But I was determined to take the cruise, which we had already paid for, and that my wife, and her two sisters (and spouses) who were accompanying us, were looking forward to.

So we started looking for dialysis centers along the way. Dialysis cruises were out, as we had already booked and paid for the Fascination.

Here's what I found:

In the U.S., outbound and inbound

Fascination sails from Jacksonville, FL, where a Fresenius Medical Center is located. This is the chain I use at home and is excellent. They will accommodate me early in the morning of embarkation (and get me out in time to make the ship), and again when we come back. The center is about 30 minutes from Jacksonville Port. If you use an FMC, your center can coordinate with Jacksonville and get send your records to them.

1715 Kings Ave

Jacksonville, FL 32207-8636

(904) 396-7203 ‎

In the Bahamas

Renal House

You must call and ask for their "request for service" form. You'll then receive (by fax) several pages to fill out, and a list of medical records they require. It's extensive:

• Records of hospitalizations for the last year
  
• Xrays, EKGs and lab results for last three months
  
• HIV and tuberculosis test results for last year (must be clear of each)
  
• Social and dietary profiles
  
• Dialysis flow sheets for last three sessions
  

All to be submitted 10-14 days before the requested date of service.

The charge is $100 per dialysis hour, with a 3-hour minimum.

Dr. Ilsa Grant Taylor

Charge Nurse: Madronna

Renal House

+ 1 242 322 1530

This one didn't work for me, but may for someone else. There was not time for me to assemble all these records from the hospital and doctors, plus get an HIV test, and submit them before their deadline, so I will not be doing dialysis during the week of the cruise. Fortunately, my doctor says I can skip a session without ill effect, if I am careful about fluid intake and my diet, and re-start on my diuretics.

So we're on for our cruise. I'll report back on my experience with the Jacksonville FMC and on skipping a session during the week and how I was able to manage.

Hopefully, this will help those like me who are searching for this information.

gary

zacsmith, I truly hope it works out well for you!!!

I have no experience with your medical problems, but I can see/read the great attitude you have and applaud it!!

Have a wonderful cruise and please stay safe and healthy!!

Joanie

Hey Gary,

Good luck on your cruise. My husband has been on Peritoneal dialysis for over 2 years now. We have done two cruises and one all inclusive vacation to Mexico. Our next cruise is the end of December.

I know Hemodialysis is more restrictive for traveling but the Peritoneal has been great.

We have to pay to have the solutions used to be delivered to the ship but there is no cost at this time to have it delivered to any of the hotels we have stayed in.

Watch your salt while on the cruise as well. That is one thing that can be a real problem.

Have fun!!!

Congratulations on your cruise. I would have bet it couldn't be done. Don't know how knowledgeable you are about cruising, but in case you don't already know; meet with one of the head waiters (probably after dinner, tell your waiter you need to see him/her) and explain your dietary restrictions. They will try to accomadate your needs.

'

I hate to sound negative, but I am shocked that your nephrologist would tell you that you could skip dialysis for a few days when you've been on it such a short time. My husband has been on dialysis for over two years (kidney failure caused by a cancer), and it took a few months to get the prescription right. Do you have a plan if you start feeling unwell?

Hey Gary,

Good luck on your cruise. My husband has been on Peritoneal dialysis for over 2 years now. We have done two cruises and one all inclusive vacation to Mexico. Our next cruise is the end of December.

 

I know Hemodialysis is more restrictive for traveling but the Peritoneal has been great.

 

We have to pay to have the solutions used to be delivered to the ship but there is no cost at this time to have it delivered to any of the hotels we have stayed in.

 

Watch your salt while on the cruise as well. That is one thing that can be a real problem.

 

Have fun!!!

Thanks, Wildcatllamas. I've been on a salt-restriction for more than 30 years, to the point where even regular hospital food that has salt is too salty for me! No issues there. More worrisome is potassium, but since my levels are general low, I don't believe it will be a problem in such a short time.

We're examining PD, but want to get more experience on HD before making any changes. DW is afraid of the procedure, since diabetics such as myself heal very slowly, from the surgery for the catheter, for example.

gary

Congratulations on your cruise. I would have bet it couldn't be done. Don't know how knowledgeable you are about cruising, but in case you don't already know; meet with one of the head waiters (probably after dinner, tell your waiter you need to see him/her) and explain your dietary restrictions. They will try to accomadate your needs.

'

Thanks, MandD. This is our first cruise, so I've been lurking on these boards since we booked to learn more. I will let the waiter know about the restrictions. I also intend to eat sparingly, relative to what others do, perhaps, as I don't want to blow my diet. If I do, I'll pay for it with more time on the "machine" and the discomfort that comes with it.

gary

I hate to sound negative, but I am shocked that your nephrologist would tell you that you could skip dialysis for a few days when you've been on it such a short time. My husband has been on dialysis for over two years (kidney failure caused by a cancer), and it took a few months to get the prescription right. Do you have a plan if you start feeling unwell?

Not negative at all, klauer, and a valid concern we shared as well. In fact, we were prepared to not go on this trip (we purchased cruise insurance, so we could reschedule, but it would be without the sisters — bummer).

We carefully researched the perils of skipping a treatment, consulted with my nephrologist (who has followed me for four years), the dialysis clinic charge nurse (known her only a short time, but she is very competent), and even my primary MD and cardiologist, for good measure.

All agree that I could handle this trip, because:

a) I am extremely compliant with meds and diet and have been for a long time, so I could be trusted to adhere to both while traveling;

b) My nephrologist seems to have "nailed" the prescription as I have responded well to dialysis, needing only 1 kg of fluid removed at each of the last two sessions with almost no side affects other than a mild headache once, dropping 35 pounds of fluid;

c) Blood work, glucose and x-rays all look good;

d) I am still the "healthiest sick person" they all know, working full time and pursuing many other activities, so I would have the strength to handle the break;

e) I am taking a set of records along so that in case of emergency, I can be transported to the hospital in Nassau, which has a dialysis unit.

I'm detailing this so others might be able to see the health conditions that enable safe traveling — at least for me — for these circumstances.

Of course, we may all be wrong, and I'll have to be choppered out for emergency treatment, but I will certainly work to prevent that from happening! (Furiously knocking on wood!)

Thanks for your concern. I wish your husband well in his progress. My sister-in-law died of melanoma at a young age, and my dad of lymphoma. Cancer is a nasty disease, and frankly, I consider myself lucky to only have the conditions I do.

gary

Thanks for your great info I will pass it along. I manage 3 dialysis units and it is very important for our patients to find ways to vacation. If you don't mind please go to the link listed and vote for our dialysis camp to win the Pepsi competition and spread the word so all dialysis patients can have vacations too http://pep.si/c7aabK

I am still a little worried about you, OP, but I hope you have a great vacation!

Just a note of encouragement. My wife was on PD for 2-1/2 years and we cruised twice during that time without issue. She was transplanted in January and is doing very well. There is hope for dialysis patients as we know well. Take good care of yourself and enjoy to the maximum extent possible.

My dad did PD for about three to four cruises until he had to switch to HD. We did the Fascination and Imagination. He had treatment on Thursday evening and we left on Friday morning. We arrived back on Monday and he had treatment on Tuesday morning. He has had dialysis done twice in Grand Cayman, but you have to schedule a back up in Jamaica in case ship can't tender. Also, he did one in Cozumel. If needed please let me know if you need contact person for Grand Cayman and Cozumel. You have to arange all treatments yourself out of the country. He did Key West once. Please look into being placed on the transplant list if you are able. My dad just received a kidney this week and we cruise on Glory Dec 5, 2010. Dad is not going. I would not take a chance in cruising during hurricaine season if you are on Hemo. Good luck and don't let dialysis stop you from cruising it can be done and has been done.

:)I hope you have a great cruise. I've been on Home Hemo for about two years and have taken my machine on a number of trips. My wife and I are sailing on the Dream in Feb. I'll do my dyalysis in cabin on my own schedule. This will be my first dyalysis cruise and our seventh overall. Not letting the proceedure control me has been a great relief in my acceptance. Have a great cruise and let us know how it goes.

We're examining PD, but want to get more experience on HD before making any changes. DW is afraid of the procedure, since diabetics such as myself heal very slowly, from the surgery for the catheter, for example.

 

gary

Hi Gary,

Tell your wife not to worry. My husband has had diabetes since 1965. Healing can be a problem but your PD unit monitors everything very closely. DH has a great team and there was never any hesitation for the surgery. Much like your fistula it has to heal for a certain length of time before use. PD has several advantages - done daily so you feel better, less restrictive food options, easier travel and if there is any residual kidney function it is preserved longer. Home Hemo is also an option and it to has a travel set up. But with Home Hemo they require that you have an assistant with you during your treatments. I just about passed out just watching the video (and yet I give shots and treat wounds on our animals all the time).

Do watch the low potassium. Very important!!! My husband has had two episodes of cardiac arrest due to low potassium. First one we started CPR right away and the second time his defibrillator kicked him silly.:eek:

Barb

What a great idea!

Voted. Hope it wins...

Hi Gary,

Tell your wife not to worry. My husband has had diabetes since 1965. Healing can be a problem but your PD unit monitors everything very closely. DH has a great team and there was never any hesitation for the surgery. Much like your fistula it has to heal for a certain length of time before use. PD has several advantages - done daily so you feel better, less restrictive food options, easier travel and if there is any residual kidney function it is preserved longer. Home Hemo is also an option and it to has a travel set up. But with Home Hemo they require that you have an assistant with you during your treatments. I just about passed out just watching the video (and yet I give shots and treat wounds on our animals all thTh

 

e time).

 

Do watch the low potassium. Very important!!! My husband has had two episodes of cardiac arrest due to low potassium. First one we started CPR right away and the second time his defibrillator kicked him silly.:eek:

 

Barb

Thanks, all, for your very encouraging words.

It's Saturday 8 am and I am hooked up at the dialysis center in Jacksonville. All has gone very well so far. They are taking 3 kgs off to "tide me over" the missing session; so far, no effects. I'll come off at 10:30, then off to the port (about 30 minutes away) in plenty of time to board. Then back here on Thursday after we get off the ship.

The clinic (Fresenius Medical Center) has been remarkable cooperative in accommodating my schedule and working out the insurance issues.

Looking forward to that "sail away" drink, and I don't care how much it costs: I'll be on a cruise vacation!

Thanks to all on this great message board. The information I've learned made this trip possible.

I'll post updates on how the cruise went, healthwise.

Gary

Gary: Good luck with your cruise and the arrangements you've made! DH went on hemodialysis in January of this year and we continue to cruise. I wanted to pass along the name of a company called DIALYSIS AT SEA. They are a cruise travel agent that provides dialysis onboard the ship. We sailed on Oasis in July and DH had his treatments onboard. D@S brings all the equipment and medical personnel. The medical staff was great and the care he received was excellent. It's not inexpensive, but it is worth it for us to be able to continue cruising. Check their website: dialysisatsea.com to see a list of cruises available. We're booked for the Celebrity Solstice in January and Explorer of the Seas in May. I highly recommend them.

VTSAIL....I'll be interested to see how you do on your cruise with your machine. My DH just started dialysis in late summer and we have now transitioned to home hemo (Nxstage). We have done many cruises and are interested in how traveling with our own dialysis machine will work.

Best of luck and let us know how you do.

Got back home late last night after a FANTASTIC week on cruise. As a first-time cruiser, I wasn't quite sure what to expect, but was willing to give it a try. I was floored by the quality and quantity of the food, the stateroom (similar to the Fairfield Inn we stayed at the night before), the shows (as a bass player, I really appreciated the band) and the overall service and hospitality of the entire ship's company. I do not understand the beefs I've read about Carnival.

My only disappointment was that we missed Half Moon Cay due to weather conditions. Freeport and Lucaya Beach were a poor substitute, but at least I accomplished one of my goals: walk on a white sandy beach and cool my feet in pretty blue ocean water. Carnival really must do something about building a dock and getting rid of the tendering operation. The private beach (and the cabana I rented) was a MAJOR reason for choosing this cruise.

On to the dialysis stuff:

My home center gave me a boost of Epocin and iron, and it kicked in on the second cruise day. So I had lots of energy and felt great.

I did really well with five days between dialysis sessions (my wife agrees!). The dialysis techs were impressed that I had gained so little. It helped immensely that I still produce quite a bit of urine, just not so well filtered for toxins.

With only a little effort, I was able to control my food and fluid intake, gaining only a net 0.2 kilos from session to session. I don't feel as if I missed anything I wanted to eat or drink, and actually had one glass of wine at dinner and a soda sometime during the day.

Blood sugar was harder to control, but made possible by all the walking we did on the ship and in port (we had an aft stateroom, and had to walk to midship and forward for any activity),m and careful monitoring so I could adjust what I ate.

Dialysis after debarkation was only two hours, with a full 4-hour session on Saturday to get me back on schedule.

One thing to watch for though, and the reason won't repeat missing a session, is that the blood in my catheter started to "set". This is apparently not clotting. More like old blood that had thickened a little in the catheter. It took some effort to pump it in and out to clear the line so the dialysis machine could work. The nurses didn't seem worried, and things got flowiing well enough in just a minute or two. This will be fixed when I get my fistula (next week).

Overall, a good experience. In fact, my wife's sisters complained good-naturedly, that it was hard to keep up with me. They each wanted to go back to their staterooms in the afternoon for a nap, but would not be outdone by a man on dialysis.

The Jacksonville dialysis center folks were great in the after-debarkation session as well, remaining flexible on schedule to take me immediately after we got off the ship. I brought them all Carnival candy!

I'd like to cruise again, but won't miss a session to do so. Hopefully, by then, I'll be on home HD and won't need the hassle and expense of arranging dialysis abroad.

Thanks to everyone who commented on this thread, and especially to those who were concerned about my decision to skip a session. Special circumstances that won't be repeated!

I hope this thread is helpful to other newbies in similar situations to mine. I'll post a full cruise report in the main forum once I get my notes written up.

gary

So glad to hear that everything went well for you! Good luck with the fistula. DH has been using his for about 3 months now and because the flow rate is so much better than a catheter his dialysis time has been reduced by 1/2 hour per session. Hope you see similar results.

VTSAIL....I'll be interested to see how you do on your cruise with your machine. My DH just started dialysis in late summer and we have now transitioned to home hemo (Nxstage). We have done many cruises and are interested in how traveling with our own dialysis machine will work.

 

Best of luck and let us know how you do.

So glad to hear that everything went well for you! Good luck with the fistula. DH has been using his for about 3 months now and because the flow rate is so much better than a catheter his dialysis time has been reduced by 1/2 hour per session. Hope you see similar results.

That's what they told me at the clinic, and I'm looking forward to that.

g

I want to send this to the top of the board since this topic kind of hits home.

So, my fiancee and I are getting married on 9/3/11, and we are planning on taking the 5-day Bahamas cruise on the Carnival Fascination on 10/01 for a honeymoon.

My fiancee is a peritoneal dialysis patient, and we assume she will still be so when our honeymoon rolls around. She hasn't been cleared for the list yet, but we hope she will be soon. (And as she is only 27 y/o, maybe the process will be faster :))

Have any of you PD dialysis folks ever tried bringing your dialysis solution onto the boat with you instead of having it delivered to the dock? We have determined that we would only need 3 small boxes, with the boxes weighing about 20 lbs each, and this would be sufficient to cover the nights on the boat. If so, was it a hassle getting it from the car to the boat, thru check in, to your cabin? If this is not a hard process at all, we would prefer to do it this way rather than try to coordinate a delivery. Has anyone had experience with this that could share?

We are pretty excited about this cruise and starting our new lives together, and we are extremely blessed and thankful that her nephrologist has been amazing and has given us clearance to go. And best wishes to all!

Hi djcass4199,

So sorry to hear about a 27-year-old with kidney failure. Life is just not fair, but going on a cruise proves you're committed to living, despite health problems. However, you can cruise as a dialysis patient — I'm living proof of that!

You will have a blast on the Fascination! We did and would gladly sail with the ship again. The ship is lovely in a touristy kind of way (a compliment), the food was perfectly satisfactory to us (living in Atlanta, we go to a lot of very good restaurants), the service from room stewards, dining room attendants, and staff throughout the ship was fantastic. The entertainment options are first-rate. And if Trevor is your Cruise Director, as he was for our cruise, you are in for a treat. These are people who very much enjoy helping you have a great time. Being a first-time cruiser, I was worried about not having much to do after a day or two, but it turned out we missed a lot of things because we needed another couple of days. You'll find the same, I am sure.

Of course, I'm an HD patient, not PD. However, I can tell you a little about your concerns. I'll answer your questions below, but would say that the ship is very accustomed to getting deliveries of home health equipment and supplies, and most suppliers are used to making those deliveries. But I understand if you have anxiety about a missed delivery. After all, dialysis is a life support intervention and is NOT optional.

The terminal is easy to find and get to. I would highly suggest you get to Jacksonville the day before. It makes debarkation day so much more relaxed. There is a bit of a wait to enter the port proper due to security checks at the perimeter, but they're pretty efficient and the double line of cars moves fast.

You can drive right up to the terminal and unload. There are porters who will take you luggage and PD solutions from the front of the terminal right into the ship. Tip them $5-10 and all will be fine. Luggage, etc., will be delivered to the staterooms as late as 8 p.m., so make certain you have everything you need for the afternoon and evening (clothing, meds, etc., plus whatever solutions you need for exchanges from the time you board until delivery. You can start boarding about 11 am. The ship leaves at 5, as I recall.

We traveled with several oxygen cylinders (and had a concentrator delivered to the ship) and a wheelchair, as I had dialysis that morning and went directly to the terminal, so I was shaky and in no shape for the wait and walk through security. We coordinated through the "special needs" office at Carnival for VIP access through security and up the loooong boarding ramp into the ship. It's not steep, but it is long (I may have mentioned that). If your fiance has fluid overload on that day, she may be a little out of breath getting up the ramp. I suggest you contact the special needs office and see if, as a dialysis patient, you can get VIP boarding. It will save you an hour or so of waiting in lines, both in the terminal (which is air-conditioned) and in the line on the ramp waiting to pass through ship security (which is not air-conditioned, but does have an overhead awning). The terminal staff is very efficient, but they're processing and boarding more than 2,000 people and security is pretty intensive. There are scanner (not the body image kind) you have to go through. We found that an original birth certificate and driver's license were fine for identification, especially since the Bahamas is a closed-loop cruise. (Next time, we're getting passports.) We also took copies of all of our prescriptions in case my trunkload of meds was questioned. You may want to take a "letter of medical necessity" from your doctor for the same reason. The special needs office can advise you on this.

The staterooms are small but serviceable and very well organized. You won't spend much time there ... trust me on this ... except perhaps for exchanges (other than sleeping, etc.). You'll probably have room for your exchange liquids (we had room for three O2 tanks and the concentrator on one corner) unless you have one of the very small interior rooms. I would imagine the room stewards can store solution not immediately needed. (The guys are magicians in what they can do for you. Just tip at the beginning of the cruise — $20 — in addition to the auto-tip, and they'll be at your service throughout the cruise.)

As an aside, there is precisely ONE 120v outlet in the room next to the vanity mirror. We took a four-outlet heavy duty roll-up extension cord (the crank thing you can get at Home Depot) and had no problems with it getting through luggage inspection. I think they don't like the lightweight type.

The only problem you may have, which I can't answer, is disposal of the solutions. If they're safe for dumping down the drain, you can do that in the bathroom, most likely. Check with the special needs office. Or you can pack them back out.

Getting off the ship after the cruise is the opposite, somewhat, of entering. You're called by sections according to where your room is. If you're special needs rated (like I was with my wheelchair) you get off right after the paid VIP and self-carry passengers. Takes about 45 minutes for them to clear the ship while you wait on one of the upper decks (can't recall which one; it was the casino deck). Then back down to Deck 3 and out the ramp. For some reason, the ship was lower in the water and the ramp was very short and level. Low tide, perhaps.

You'll need to go through customs, which is mainly filling out a form (do it on the ship; the forms will be in your room on the last day) and swearing you have no contraband. You set your luggage and anything else you want delivered to the terminal in the hall outside your room the night before you arrive back in port (the stewards seem to spend most of the night picking it all up and transporting down to the cargo deck). Luggage will be organized in the terminal according to your section. Grab a cart (there are lots of them) or a porter, pass through the customs station (about 5 seconds) and you're out the door just a very short distance from the parking lot.

I think that's everything, so hopefully I've answered some of your questions and soothed some anxieties. Traveling with kidney failure is a challenge, no matter which form of dialysis you need, but there is lots of assistance available. Do not hesitate to ask Carnival or the ship's staff before and while on cruise.

As a new patient, be sure to check out this forum: http://ihatedialysis.com Contrary to it's name, it's a hugely valuable information and support resource for CKF patients, long-term and new. I hang out there under the username GraphicBass.

Sorry for the long post, but I wanted to answer your questions fully, and for future forum users in the same situation. It was hard enough for me to find relevant information when I was planning our cruise.

Let me know if you need any other info...

Happy Cruisin'

gary

Gary,

Thank you a million times over for your insight into this! I showed your reply to my fiancee who read it with great interest.

We talked the other night about the dialysis situation and we are now leaning on just having the supplies delivered. We tested the suitcase situation and loaded up a large case with supplies and decided it would probably be way easier to have her medical supply company deliver the stuff to the ship rather than us pack it all up and bring it with. That is also fascinating about the number of power outlets in the room. I was on the Victory with some friends back in 2007 and I definitely don't recall the power outlet situation, so that was very good information to have and we appreciate you bringing it up! We are going to go out and buy a short extension cord and just pack it away in the case with her machine. Apparently they make hard cases with wheels, so lugging it around should be pretty efficient. And the fact that the machine is small, weighs probably 25 pounds, and is the size of a briefcase helps too.

I guess my next question would be did you take your prescription meds as a carry on with you or did you check it with your other luggage? We are thinking of just getting a small pill case that lets you separate the pills by day, which will be way more efficient than packing 10 different bottles of pills. Fortunately, we also have the slips for all the prescriptions, so she will probably stuff those in her purse and carry it with.

Anyhow, I'm in a coffee shop with my laptop which is spitting out low battery warnings, so I'm going to sign off for now. I will definitely get in touch with you again if we have any more questions.

THanks again for sharing your experience with us! My fiancee thanks you and I do too. Hats off to you sir and a million thank you's and well wishes!

Daniel

P.S. That is fascinating that you are from Atlanta! We are also from Atlanta.....I live in the Alpharetta area and she is out by Stone Mountain.

Hi Daniel,

I'm glad my post was so helpful to you and your fiance. Always glad to share information.

I made a mistake with my meds, actually. I only take them twice a day: morning and bedtime, so I packed them all in my normal suitcase, which was checked.

When our luggage had not shown up by the time the ship left the dock, nor our oxygen concentrator, we began to get a little worried. I tipped the room steward to go find our luggage and concentrator and verify they were on board. He did find them, tracked us down, and saved us from having to worry about whether or not to get off the ship before it left.

Next cruise I'm going to check the bulk meds, but keep a carry-on with everything I need for the evening and the next morning (many of my meds are cardiac related and I can't miss them). I would recommend you do the same, if you haven't already decided to do that. As far as the day sorter, I've never used one of those, as I prefer to identify each pill as I take it out of the bottle to make certain I'm taking everything. My pills change shape and color from time to time, so I can't really identify them easily without the bottle. I have a little zipped case, about 4x8x12 that hold all the bottles and a week's worth of diabetic supplies. Works for me and packs easily. That way I have the pharmacy bottles in case there's a question about prescription legitimacy. But whatever works; I know folks who sweat by the sorters.

As far as outlets, we were in an aft balcony cabin (nice room, BTW), so the one-outlet thing might be peculiar to that particular room.

We're from Washington, D.C. originally, then moved to Atlanta from Knoxville in 1995. Have lived in Lilburn the whole time. I have a client in Alpharetta (nice little city) and visit Stone Mountain quite often. In fact, in winter when the leaves have dropped, I can see "the rock" from my house!

Later...

gary